Bio


As a Pediatric Oncologist, Palliative Care Physician, and Phase I and End– of– Life Care Clinical Investigator, I am intimately aware of the distress experienced by children with advanced cancer and the ethical and end– of– life/bereavement issues surrounding their disease progression. I currently serve as the Chief of the Division of Quality of Life and Pediatric Palliative Care here at Stanford, as well as the Director of the Quality of Life for All (QoLA) Program. Additionally, I serve as the Associate Chief Quality Officer for Patient Experience and Holistic Care. In my past career at St Jude, I served as the Director of our large Pediatric Hematology/Oncology Fellowship Program for more than a decade. My research interests include ethical considerations surrounding enrollment in Phase I clinical trials, AYA palliative oncology care, end– of– life decision making, grief and bereavement, integrating palliative care into the ongoing care of children with cancer as well as patient– reported outcomes and pain and symptom control in the context of pediatric oncology care. I have received significant extramural funding for my research, and I have participated in dozens of studies related to pediatric palliative care. I have authored ~250 academic works on palliative care subjects within the context of pediatric oncology. In sum, I am a recognized global expert and leader in the field of Pediatric Palliative Care.

Clinical Focus


  • Hospice and Palliative Medicine

Academic Appointments


Professional Education


  • Board Certification: American Board of Pediatrics, Hospice and Palliative Medicine (2019)
  • Board Certification: American Board of Pediatrics, Pediatric Hematology-Oncology (2009)
  • Fellowship: St Jude's Research Hospital Hematology/Oncology Fellowship (2007) TN
  • Board Certification: American Board of Pediatrics, Pediatrics (2004)
  • Residency: University of Texas Health Science Center Dept of Pediatrics (2004) TX
  • Medical Education: University of Texas School of Medicine at San Antonio (2001) TX

All Publications


  • Understanding treatment recommendations at diagnosis of advanced cancer in pediatric oncology: The need to explore decision-making challenges globally PEDIATRIC BLOOD & CANCER Force, L. M., Hlatywayo, L., Salek, M., Bhakta, M., Bonilla, M., Kaye, E. C., Rodriguez-Galindo, C., Baker, J. N., Bhakta, N., Chitsike, I. 2024; 71 (4): e30854

    View details for DOI 10.1002/pbc.30854

    View details for Web of Science ID 001144284300001

    View details for PubMedID 38233986

    View details for PubMedCentralID PMC10922856

  • Natural language processing with machine learning methods to analyze unstructured patient-reported outcomes derived from electronic health records: A systematic review. Artificial intelligence in medicine Sim, J., Huang, X., Horan, M. R., Stewart, C. M., Robison, L. L., Hudson, M. M., Baker, J. N., Huang, I. 2023; 146: 102701

    Abstract

    OBJECTIVE: Natural language processing (NLP) combined with machine learning (ML) techniques are increasingly used to process unstructured/free-text patient-reported outcome (PRO) data available in electronic health records (EHRs). This systematic review summarizes the literature reporting NLP/ML systems/toolkits for analyzing PROs in clinical narratives of EHRs and discusses the future directions for the application of this modality in clinical care.METHODS: We searched PubMed, Scopus, and Web of Science for studies written in English between 1/1/2000 and 12/31/2020. Seventy-nine studies meeting the eligibility criteria were included. We abstracted and summarized information related to the study purpose, patient population, type/source/amount of unstructured PRO data, linguistic features, and NLP systems/toolkits for processing unstructured PROs in EHRs.RESULTS: Most of the studies used NLP/ML techniques to extract PROs from clinical narratives (n=74) and mapped the extracted PROs into specific PRO domains for phenotyping or clustering purposes (n=26). Some studies used NLP/ML to process PROs for predicting disease progression or onset of adverse events (n=22) or developing/validating NLP/ML pipelines for analyzing unstructured PROs (n=19). Studies used different linguistic features, including lexical, syntactic, semantic, and contextual features, to process unstructured PROs. Among the 25 NLP systems/toolkits we identified, 15 used rule-based NLP, 6 used hybrid NLP, and 4 used non-neural ML algorithms embedded in NLP.CONCLUSIONS: This study supports the potential utility of different NLP/ML techniques in processing unstructured PROs available in EHRs for clinical care. Though using annotation rules for NLP/ML to analyze unstructured PROs is dominant, deploying novel neural ML-based methods is warranted.

    View details for DOI 10.1016/j.artmed.2023.102701

    View details for PubMedID 38042599

  • Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Levine, D. R., Epperly, R., Collins, G., Talleur, A. C., Mandrell, B., Pritchard, M., Mothi, S., Li, C., Lu, Z., Baker, J. N. 2023; 66 (3): 248-257

    Abstract

    Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT.This study aimed to evaluate perceived symptom burden and patient/parent attitudes toward early PC integration in pediatric HCT.Following IRB approval, consent/assent, eligible participants were surveyed at St. Jude Children's Research Hospital including English-speaking patients aged 10-17, 1-month to 1-year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients

    View details for DOI 10.1016/j.jpainsymman.2023.06.005

    View details for Web of Science ID 001097904100001

    View details for PubMedID 37302531

  • Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America JAMA NETWORK OPEN McNeil, M. J., Ehrlich, B., Wang, H., Bustamante, M., Dussel, V., Friedrich, P., Garcia Quintero, X., Gillipelli, S. R., Gomez Garcia, W., Graetz, D., Kaye, E. C., Metzger, M., Sabato Danon, C., Devidas, M., Baker, J. N., Agulnik, A., Assessing Doctors Attitudes 2023; 6 (1): e2251496

    Abstract

    Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood.To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America.The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America.The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively.A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged <35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution (P < .001). The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries.This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.

    View details for DOI 10.1001/jamanetworkopen.2022.51496

    View details for Web of Science ID 001059410400007

    View details for PubMedID 36656580

    View details for PubMedCentralID PMC9857245

  • Food Is Love: Partnering With Families to Provide Nourishment at the End of Life JOURNAL OF CLINICAL ONCOLOGY Kaye, E. C., Kegel, A., Weber, M., Cartwright, C., Spraker-Perlman, H., Robinson, G. W., Baker, J. N. 2020; 38 (16): 1864-+

    View details for DOI 10.1200/JCO.20.00176

    View details for Web of Science ID 000537770500013

    View details for PubMedID 32239985

    View details for PubMedCentralID PMC7587412

  • Bereaved Parents, Hope, and Realism PEDIATRICS Kaye, E. C., Kiefer, A., Blazin, L., Spraker-Perlman, H., Clark, L., Baker, J. N., St Jude Quality Life Steering Coun 2020; 145 (5)

    View details for DOI 10.1542/peds.2019-2771

    View details for Web of Science ID 000531417100036

    View details for PubMedID 32273435

  • A Model of Interpersonal Trust, Credibility, and Relationship Maintenance PEDIATRICS Sisk, B., Baker, J. N. 2019; 144 (6)

    View details for DOI 10.1542/peds.2019-1319

    View details for Web of Science ID 000503171700019

    View details for PubMedID 31722962

    View details for PubMedCentralID PMC6889969

  • Impact of Race and Ethnicity on End-of-Life Experiences for Children With Cancer AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE Kaye, E. C., Gushue, C. A., DeMarsh, S., Jerkins, J., Li, C., Lu, Z., Snaman, J. M., Blazin, L., Johnson, L., Levine, D. R., Morrison, R., Baker, J. N. 2019; 36 (9): 767-774

    Abstract

    Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood.To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer.A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015.Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity.Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.

    View details for DOI 10.1177/1049909119836939

    View details for Web of Science ID 000478608300003

    View details for PubMedID 30866645

  • "What if?": Addressing uncertainty with families PEDIATRIC BLOOD & CANCER Snaman, J. A., Feraco, A. M., Wolfe, J., Baker, J. N. 2019; 66 (6): e27699

    Abstract

    Children with cancer and their families deal with uncertainty throughout their treatment course. Clinicians must help patients and families manage uncertainty by engaging them in discussions about their worries and fears. Too often, clinicians avoid or defer discussions about anticipated or worried-about future events-the "what ifs." Failing to engage in these conversations may lead to increased distress. We have developed a framework for having "what if" conversations with patients and families that enables providers to explore families' informational and emotional needs. This framework may enable providers to improve families' prognostic understanding, explore concerns, and examine preferences and goals of care.

    View details for DOI 10.1002/pbc.27699

    View details for Web of Science ID 000465150800062

    View details for PubMedID 30848085

  • The Impact of Pediatric Palliative Care Involvement in the Care of Critically Ill Patients without Complex Chronic Conditions JOURNAL OF PALLIATIVE MEDICINE Spraker-Perlman, H. L., Tam, R. P., Bardsley, T., Wilkes, J., Farley, L., Moore, D., Sheetz, J., Baker, J. N. 2019; 22 (5): 553-556

    Abstract

    Background: The impact of pediatric palliative care (PPC) is well established for children with chronic complex diseases. However, PPC likely also benefits previously healthy children with acute life-threatening conditions. Objective: To determine the incidence and impact of PPC for previously healthy patients who died in a pediatric hospital. Design: Retrospective chart review of all pediatric deaths over four years. Setting/Subjects: Patients were 0 to 25 years old, died during an inpatient stay at an academic pediatric hospital ≥48 hours after admission, and had no complex chronic conditions (CCCs) before admission. Measurements: One hundred sixty-seven patients met the eligibility criteria. Most died in intensive care settings (n = 149, 89%), and few (n = 34, 20%) received PPC consultations or services. Results: Patients who received PPC services were more likely to receive a multidisciplinary care conference than did patients without PPC support (70.5% vs. 39.9%; p = 0.001), which also occurred earlier for patients who received PPC services (seven days vs. two days before death; p = 0.04). Most patients had documented end-of-life planning in their medical records; however, this occurred earlier for patients who received PPC consultation (9.5 days before death) than for those who did not (two days before death; p < 0.0001). Patients receiving PPC support (67.7%) were also more likely to have a do-not-resuscitate/intubate order before death than those who did not (39.9%; p = 0.004). Conclusions: Pediatric patients without known CCCs who subsequently die as inpatients benefit from PPC in terms of goals of care discussions and documentation of end-of-life care preferences.

    View details for DOI 10.1089/jpm.2018.0469

    View details for Web of Science ID 000467304800015

    View details for PubMedID 30589623

  • Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Kaye, E. C., Gattas, M., Kiefer, A., Reynolds, J., Zalud, K., Li, C., Lu, Z., Baker, J. N. 2019; 57 (2): 241-250

    Abstract

    Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs.To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community.A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot tested and distributed to hospice nurses across a tristate region.A total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting <5 years of hospice experience (53.7%) and no pediatric hospice experience (49.4%). Those with pediatric hospice experience reported limited opportunities to maintain or build their skills, with the majority providing care to children several times a year or less (85.7%). Nurses reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life across all domains.Children with serious illness who receive care from local hospices often interface with nurses who lack training, experience, and comfort in the provision of palliative and hospice care to pediatric patients. These findings should inform future development and investigation of educational resources, training programs, and child- and family-centered policies to improve the delivery of palliative and hospice care to children in the community.

    View details for DOI 10.1016/j.jpainsymman.2018.10.509

    View details for Web of Science ID 000456406900010

    View details for PubMedID 30391654

  • Predictors of Location of Death for Children with Cancer Enrolled on a Palliative Care Service ONCOLOGIST Kaye, E. C., DeMarsh, S., Gushue, C. A., Jerkins, J., Sykes, A., Lu, Z., Snaman, J. M., Blazin, L. J., Johnson, L., Levine, D. R., Morrison, R., Baker, J. N. 2018; 23 (12): 1525-1532

    Abstract

    In the U.S., more children die from cancer than from any other disease, and more than one third die in the hospital setting. These data have been replicated even in subpopulations of children with cancer enrolled on a palliative care service. Children with cancer who die in high-acuity inpatient settings often experience suffering at the end of life, with increased psychosocial morbidities seen in their bereaved parents. Strategies to preemptively identify children with cancer who are more likely to die in high-acuity inpatient settings have not been explored.A standardized tool was used to gather demographic, disease, treatment, and end-of-life variables for 321 pediatric palliative oncology (PPO) patients treated at an academic pediatric cancer center who died between 2011 and 2015. Multinomial logistic regression was used to predict patient subgroups at increased risk for pediatric intensive care unit (PICU) death.Higher odds of dying in the PICU were found in patients with Hispanic ethnicity (odds ratio [OR], 4.02; p = .002), hematologic malignancy (OR, 7.42; p < .0001), history of hematopoietic stem cell transplant (OR, 4.52; p < .0001), total number of PICU hospitalizations (OR, 1.98; p < .0001), receipt of cancer-directed therapy during the last month of life (OR, 2.96; p = .002), and palliative care involvement occurring less than 30 days before death (OR, 4.7; p < .0001). Conversely, lower odds of dying in the PICU were found in patients with hospice involvement (OR, 0.02; p < .0001) and documentation of advance directives at the time of death (OR, 0.37; p = .033).Certain variables may predict PICU death for PPO patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families.Children with cancer who die in high-acuity inpatient settings often experience a high burden of intensive therapy at the end of life. Strategies to identify patients at higher risk of dying in the pediatric intensive care unit (PICU) have not been explored previously. This study finds that certain variables may predict PICU death for pediatric palliative oncology patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families.

    View details for DOI 10.1634/theoncologist.2017-0650

    View details for Web of Science ID 000454579700028

    View details for PubMedID 29728467

    View details for PubMedCentralID PMC6292533

  • Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE Snaman, J. M., Kaye, E. C., Spraker-Perlman, H., Levine, D., Clark, L., Wilcox, R., Barnett, B., Sykes, A., Lu, Z., Cunningham, M. J., Baker, J. N. 2018; 35 (12): 1518-1525

    Abstract

    Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely powerful and valuable ways. The objective of this study is to present an innovative palliative care educational program facilitated by trained bereaved parents who serve as volunteer educators in local and national palliative care educational forums and to describe how incorporation of bereaved parents in these educational forums affects participant comfort with communication and management of children at the EOL.Parent educators underwent both general and session-specific training and participated in debriefings following each session. Survey tools were developed or adapted to determine how bereaved parent educators affected participant experiences in 3 different educational forums. Pre- and postsession surveys with incorporation of retrospective preprogram assessment items to control for response shift were used in the evaluation of institutional seminars on pediatric palliative and EOL care and role-play-based communication training sessions. Results from feedback surveys sent to attendees were used to appraise the participants' experience at the international oncology symposium.Involvement of trained parent educators across diverse, interdisciplinary educational forums improved attendee comfort in communicating with, and caring for, patients and families with serious illness. Importantly, parent educators also derive benefit from involvement in educational sessions with interdisciplinary clinicians.Integration of bereaved parents into palliative and EOL care education is an innovative and effective model that benefits both interdisciplinary clinicians and bereaved parents.

    View details for DOI 10.1177/1049909118786875

    View details for Web of Science ID 000452479800008

    View details for PubMedID 30012005

  • Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue PEDIATRIC BLOOD & CANCER Kaye, E. C., Kiefer, A., Zalud, K., Gattas, M., Snyder, I., Spraker-Perlman, H., Baker, J. N. 2018; 65 (12): e27378

    Abstract

    Historically, communication research in pediatric oncology has relied on surveys and interviews, resulting in cross-sectional and retrospective studies constrained by selection, recognition, and recall biases. This systematic review identifies and synthesizes the published literature analyzing primary data from recorded conversations between pediatric oncologists, patients with cancer, and their families, with the following objectives: (1) to identify the extent and content of the evidence base, (2) to describe methodological strategies utilized in the analysis of recorded medical dialogue, (3) to aggregate salient findings, and (4) to generate recommendations for future prospective research related to analysis of medical dialogue in pediatric oncology.

    View details for DOI 10.1002/pbc.27378

    View details for Web of Science ID 000447556600023

    View details for PubMedID 30070015

    View details for PubMedCentralID PMC6192838

  • Identifying and Quantifying Adolescent and Young Adult Patient Preferences in Cancer Care: Development of a Conjoint Analysis-Based Decision-Making Tool JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY Snaman, J. M., Blazin, L., Holder, R. L., Wolfe, J., Baker, J. N. 2019; 8 (2): 212-216

    Abstract

    Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these patients in decision-making, and improved communication of their preferences with family members and the medical team will lead to increased provision of goal-concordant care and decreased intensity of EOL care. In this study, we describe the development of a novel tool that quantifies the relative importance of numerous factors considered by AYA patients with cancer, their parents, and health care providers when choosing between treatment options.

    View details for DOI 10.1089/jayao.2018.0116

    View details for Web of Science ID 000448380200001

    View details for PubMedID 30362893

  • Illness and end-of-life experiences of children with cancer who receive palliative care PEDIATRIC BLOOD & CANCER Kaye, E. C., Gushue, C. A., DeMarsh, S., Jerkins, J., Sykes, A., Lu, Z., Snaman, J. M., Blazin, L., Johnson, L., Levine, D. R., Morrison, R., Baker, J. N. 2018; 65 (4)

    Abstract

    The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC).A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive standardized data extraction tool.The majority of pediatric palliative oncology patients received experimental therapy (79.4%), with 40.5% enrolled on a phase I trial. Approximately one-third received cancer-directed therapy during the last month of life (35.5%). More than half had at least one intensive care unit hospitalization (51.4%), with this subset demonstrating considerable exposure to mechanical ventilation (44.8%), invasive procedures (20%), and cardiopulmonary resuscitation (12.1%). Of the 122 patients who died in the hospital, 44.3% died in the intensive care unit. Patients with late PC involvement occurring less than 30 days before death had higher odds of dying in the intensive care unit over the home/hospice setting compared to those with earlier PC involvement (OR: 4.7, 95% CI: 2.47-8.97, P < 0.0001).Children with cancer who receive PC experience a high burden of intensive treatments and often die in inpatient intensive care settings. Delayed PC involvement is associated with increased odds of dying in the intensive care unit. Prospective investigation of early PC involvement in children with high-risk cancer is needed to better understand potential impacts on cost-effectiveness, quality of life, and delivery of goal concordant care.

    View details for DOI 10.1002/pbc.26895

    View details for Web of Science ID 000425642100004

    View details for PubMedID 29218773

    View details for PubMedCentralID PMC6159948

  • Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice CHILDREN-BASEL Blazin, L. J., Cecchini, C., Habashy, C., Kaye, E. C., Baker, J. N. 2018; 5 (3)

    Abstract

    Effective communication is essential to the practice of pediatric oncology. Clear and empathic delivery of diagnostic and prognostic information positively impacts the ways in which patients and families cope. Honest, compassionate discussions regarding goals of care and hopes for patients approaching end of life can provide healing when other therapies have failed. Effective communication and the positive relationships it fosters also can provide comfort to families grieving the loss of a child. A robust body of evidence demonstrates the benefits of optimal communication for patients, families, and healthcare providers. This review aims to identify key communication skills that healthcare providers can employ throughout the illness journey to provide information, encourage shared decision-making, promote therapeutic alliance, and empathically address end-of-life concerns. By reviewing the relevant evidence and providing practical tips for skill development, we strive to help healthcare providers understand the value of effective communication and master these critical skills.

    View details for DOI 10.3390/children5030040

    View details for Web of Science ID 000428506400009

    View details for PubMedID 29534479

    View details for PubMedCentralID PMC5867499

  • Navigating Nondisclosure Requests in Pediatrics Honesty and Sensitivity Are Transcultural Practices JAMA PEDIATRICS Levine, D. R., Johnson, L., Baker, J. N. 2017; 171 (11): 1044-1045
  • Strange Bedfellows No More: How Integrated Stem-Cell Transplantation and Palliative Care Programs Can Together Improve End-of-Life Care JOURNAL OF ONCOLOGY PRACTICE Levine, D. R., Baker, J. N., Wolfe, J., Lehmann, L. E., Ullrich, C. 2017; 13 (9): 569-+

    Abstract

    In the intense, cure-oriented setting of hematopoietic stem-cell transplantation (HSCT), delivery of high-quality palliative and end-of-life care is a unique challenge. Although HSCT affords patients a chance for cure, it carries a significant risk of morbidity and mortality. During HSCT, patients usually experience high symptom burden and a significant decrease in quality of life that can persist for long periods. When morbidity is high and the chance of cure remote, the tendency after HSCT is to continue intensive medical interventions with curative intent. The nature of the complications and overall condition of some patients may render survival an unrealistic goal and, as such, continuation of artificial life-sustaining measures in these patients may prolong suffering and preclude patient and family preparation for end of life. Palliative care focuses on the well-being of patients with life-threatening conditions and their families, irrespective of the goals of care or anticipated outcome. Although not inherently at odds with HSCT, palliative care historically has been rarely offered to HSCT recipients. Recent evidence suggests that HSCT recipients would benefit from collaborative efforts between HSCT and palliative care services, particularly when initiated early in the transplantation course. We review palliative and end-of-life care in HSCT and present models for integrating palliative care into HSCT care. With open communication, respect for roles, and a spirit of collaboration, HSCT and palliative care can effectively join forces to provide high-quality, multidisciplinary care for these highly vulnerable patients and their families.

    View details for DOI 10.1200/JOP.2017.021451

    View details for Web of Science ID 000410707100003

    View details for PubMedID 28898603

    View details for PubMedCentralID PMC6366811

  • Patients' and Parents' Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology JAMA ONCOLOGY Levine, D. R., Mandrell, B. N., Sykes, A., Pritchard, M., Gibson, D., Symons, H. J., Wendler, D., Baker, J. N. 2017; 3 (9): 1214-1220

    Abstract

    Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory.To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs.Novel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate).Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results.Of the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those reporting suffering indicated substantial suffering severity from specific symptoms (ie, a great deal or a lot) including nausea, 52.3% (57 of 109), loss of appetite, 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%], respectively). Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within 1 response category. Significant differences in patient-parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (P < .001).Pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.

    View details for DOI 10.1001/jamaoncol.2017.0368

    View details for Web of Science ID 000410676400013

    View details for PubMedID 28278329

    View details for PubMedCentralID PMC5824292

  • Pediatric Palliative Oncology: Bridging Silos of Care Through an Embedded Model JOURNAL OF CLINICAL ONCOLOGY Kaye, E. C., Snaman, J. M., Baker, J. N. 2017; 35 (24): 2740-+

    View details for DOI 10.1200/JCO.2017.73.1356

    View details for Web of Science ID 000407824700006

    View details for PubMedID 28700277

  • Palliative Care Involvement Is Associated with Less Intensive End-of-Life Care in Adolescent and Young Adult Oncology Patients JOURNAL OF PALLIATIVE MEDICINE Snaman, J. M., Kaye, E. C., Lu, J. J., Sykes, A., Baker, J. N. 2017; 20 (5): 509-516

    Abstract

    Adolescent and young adult oncology (AYAO) patients often receive intensive medical care and experience significant symptoms at the end of life (EOL).This study aimed to describe the characteristics of AYAO patients aged 15-26 years who died as inpatients in a hospital and to compare the illness and EOL experiences of AYAO patients who did and did not receive palliative care (PC).A standardized data extraction tool was used to collect information about demographics, treatment, terminal characteristics, and symptoms during the last month of life (LMOL) for 69 AYAO patients who died while hospitalized between 2008 and 2014.AYAO patients who died in the hospital required considerable medical and psychosocial care and experienced numerous symptoms during the LMOL. Compared to those patients who received no formal PC services, patients followed by the PC team were less likely to die in the intensive care unit (ICU) (38% vs. 68%, p = 0.024) and less likely to have been on a ventilator (34% vs. 63%, p = 0.028) during the LMOL. They also received fewer invasive medical procedures during the LMOL (median, 1 vs. 3 procedures, p = 0.009) and had a do not resuscitate order in place for a longer time before death (median, 6 vs. two days, p = 0.008).Involvement of the PC team was associated with the receipt of less intensive treatments and fewer deaths in the ICU.

    View details for DOI 10.1089/jpm.2016.0451

    View details for Web of Science ID 000400572600013

    View details for PubMedID 28099053

  • Outcome Measurement for Children and Young People JOURNAL OF PALLIATIVE MEDICINE Harding, R., Wolfe, J., Baker, J. N. 2017; 20 (4): 313

    View details for DOI 10.1089/jpm.2016.0525

    View details for Web of Science ID 000398452000003

    View details for PubMedID 28072920

  • Empowering Bereaved Parents Through the Development of a Comprehensive Bereavement Program JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Snaman, J. M., Kaye, E. C., Levine, D. R., Cochran, B., Wilcox, R., Sparrow, C. K., Noyes, N., Clark, L., Avery, W., Baker, J. N. 2017; 53 (4): 767-775

    Abstract

    Parents who experience the loss of a child have unique and valuable insights into the grief journey and can help health care providers identify key components intrinsic to the development, implementation, and maintenance of a comprehensive bereavement program. The bereavement program at St. Jude Children's Research Hospital was developed by pediatric palliative care experts in collaboration with bereaved parents to standardize and improve the institutional support provided to families around and after the death of a child. This article describes the components of a parent-derived bereavement program and presents early results on the effects of specific program components. The program, under the leadership of the bereavement coordinator, includes clinical and supportive interventions offered throughout the grief journey, parent-created bereavement support materials, and opportunities for parents and families to participate in research, quality improvement initiatives and educational interventions. Parents report that services and interventions provided through the bereavement program are beneficial to families after the death of their child. In addition, both health care providers and bereaved parents report that participation in educational interventions positively impacts their experiences as clinicians and parents, respectively. The innovative nature of this parent-driven, comprehensive bereavement program may serve as a paradigm for the development of bereavement programs in the fields of pediatrics, palliative oncology and hospice and palliative medicine.

    View details for DOI 10.1016/j.jpainsymman.2016.10.359

    View details for Web of Science ID 000402485200015

    View details for PubMedID 28042068

  • Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys CANCER Snaman, J. M., Kaye, E. C., Torres, C., Gibson, D. V., Baker, J. N. 2016; 122 (17): 2757-2765

    Abstract

    Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death.Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques.Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents.Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2757-2765. © 2016 American Cancer Society.

    View details for DOI 10.1002/cncr.30087

    View details for Web of Science ID 000383617200020

    View details for PubMedID 27244654

  • Early Integration of Palliative Care for Children with High-Risk Cancer and Their Families PEDIATRIC BLOOD & CANCER Kaye, E. C., Friebert, S., Baker, J. N. 2016; 63 (4): 593-597

    Abstract

    Despite increasing data to support pediatric palliative care (PPC) as an integral component of high-quality care for children with life-threatening conditions and their families, timely integration of PPC is offered inconsistently to children with high-risk cancer. In this review, we summarize the growing body of literature in support of early integration of PPC for children with high-risk cancer and their families, advocating that PPC principles and resources are imperative to holistic cancer-directed care and rooted in evidence-based medicine. Finally, we offer possible strategies for optimizing integration of PPC into holistic cancer care for children and families.

    View details for DOI 10.1002/pbc.25848

    View details for Web of Science ID 000370497100005

    View details for PubMedID 26579997

  • Pediatric Palliative Oncology: A New Training Model for an Emerging Field JOURNAL OF CLINICAL ONCOLOGY Snaman, J. M., Kaye, E. C., Levine, D. R., Chesney, P., Jackson, W., Cunningham, M. J., Baker, J. N. 2016; 34 (3): 288-U153

    View details for DOI 10.1200/JCO.2015.63.0178

    View details for Web of Science ID 000374331100019

    View details for PubMedID 26598743

  • Patterns of End-of-Life Care in Children With Advanced Solid Tumor Malignancies Enrolled on a Palliative Care Service JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Vern-Gross, T. Z., Lam, C. G., Graff, Z., Singhal, S., Levine, D. R., Gibson, D., Sykes, A., Anghelescu, D. L., Yuan, Y., Baker, J. N. 2015; 50 (3): 305-312

    Abstract

    Pediatric patients with solid tumors can have a significant symptom burden that impacts quality of life (QoL) and end-of-life care needs.We evaluated outcomes and symptoms in children with solid tumors and compared patterns of end-of-life care after implementation of a dedicated institutional pediatric palliative care (PC) service.We performed a retrospective cohort study of children with solid tumors treated at St. Jude Children's Research Hospital, before and after implementation of the institutional QoL/PC service in January 2007. Patients who died between July 2001 and February 2005 (historical cohort; n = 134) were compared with those who died between January 2007 and January 2012 (QoL/PC cohort; n = 57).Median time to first QoL/PC consultation was 17.2 months (range 9-33). At consultation, 60% of children were not receiving or discontinued cancer-directed therapy. Within the QoL/PC cohort, 54 patients had documented symptoms, 94% required intervention for ≥3 symptoms, and 76% received intervention for ≥5 symptoms. Eighty-three percent achieved their preferred place of death. Compared with the historical cohort, the QoL/PC cohort had more end-of-life discussions per patient (median 12 vs. 3; P < 0.001), earlier end-of-life discussions, with longer times before do-not-resuscitate orders (median 195 vs. 2 days; P < 0.001), and greater hospice enrollment (71% vs. 46%, P = 0.002).Although children with solid tumor malignancies may have significant symptom burden toward the end of life, positive changes were documented in communication and in places of care and death after implementation of a pediatric PC service.

    View details for DOI 10.1016/j.jpainsymman.2015.03.008

    View details for Web of Science ID 000360084300008

    View details for PubMedID 25891664

    View details for PubMedCentralID PMC4550524

  • Research Priorities in Pediatric Palliative Care JOURNAL OF PEDIATRICS Baker, J. N., Levine, D. R., Hinds, P. S., Weaver, M. S., Cunningham, M. J., Johnson, L., Anghelescu, D., Mandrell, B., Gibson, D. V., Jones, B., Wolfe, J., Feudtner, C., Friebert, S., Carter, B., Kane, J. R. 2015; 167 (2): 467-+

    Abstract

    To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda.A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus.A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education.This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.

    View details for DOI 10.1016/j.jpeds.2015.05.002

    View details for Web of Science ID 000362455300049

    View details for PubMedID 26028284

    View details for PubMedCentralID PMC4516589

  • Practical communication guidance to improve phase 1 informed consent conversations and decision-making in pediatric oncology CANCER Johnson, L., Leek, A. C., Drotar, D., Noll, R. B., Rheingold, S. R., Kodish, E. D., Baker, J. N. 2015; 121 (14): 2439-2448

    Abstract

    It can be difficult to explain pediatric phase 1 oncology trials to families of children with refractory cancer. Parents may misunderstand the information presented to them, and physicians may assume that certain topics are covered in the informed consent document and need not be discussed. Communication models can help to ensure effective discussions.Suggestions for improving the informed consent process were first solicited from phase 1 study clinicians via questionnaire. Eight parents who had enrolled their child on a phase 1 pediatric oncology trial were recruited for an advisory group designed to assess the clinicians' suggestions and make additional recommendations for improving informed consent for pediatric phase 1 trials.A phase 1 communication model was designed to incorporate the suggestions of clinicians and families. It focused on educating parents/families about phase 1 trials at specific time points during a child's illness, but specifically at the point of disease recurrence. An informative phase 1 fact sheet that can be distributed to families was also presented.Families who will be offered information regarding phase 1 clinical trials can first receive a standardized fact sheet explaining the general purpose of these early-phase clinical trials. Parental understanding may be enhanced further when oncologists address key themes, beginning at the time of diagnosis and continuing through important decision points during the child's illness. This model should be prospectively evaluated.

    View details for DOI 10.1002/cncr.29354

    View details for Web of Science ID 000357340200021

    View details for PubMedID 25873253

    View details for PubMedCentralID PMC4490010

  • Patient-controlled analgesia at the end of life at a pediatric oncology institution PEDIATRIC BLOOD & CANCER Anghelescu, D. L., Snaman, J. M., Trujillo, L., Sykes, A. D., Yuan, Y., Baker, J. N. 2015; 62 (7): 1237-1244

    Abstract

    Patient controlled anesthesia (PCA) is increasingly used to manage pain in pediatric cancer patients and is important in the treatment of escalating pain at the end of life. The description of the use of opioid PCA in this population has been limited.This retrospective chart review of the last 2 weeks of life addressed the following objectives: (1) to describe the patient population treated with opioid PCA; (2) to describe the morphine-equivalent doses (MED) (mg/kg/day); and (3) to describe the pain scores (PS).Twenty-eight percent of inpatients used opioid PCA for pain control during the last 2 weeks of life. The mean MED (mg/kg/day) (SD) at 2 weeks prior and the day of death were 10.7 (17.9) and 19 (25.8). The mean MED increased over the last 2 weeks of life for all patients and across age groups and cancer diagnoses (all P < 0.05). The mean MED was significantly higher in the younger age group (age <13 vs. age ≥ 13) on the day of death (P < 0.04). There was a significant change in mean PS over the last 2 weeks of life (P < 0.001), with the highest PS on the day before death. The most frequently used concurrent medications were benzodiazepines (91%).Children and young adults with cancer experience high opioid requirements and significant dose increases during the last 2 weeks of life. Additionally, PS increase toward the end of life. Opioid rotation and addition of adjuvant medications merit consideration in the context of escalating opioid requirements.

    View details for DOI 10.1002/pbc.25493

    View details for Web of Science ID 000354541600025

    View details for PubMedID 25820345

    View details for PubMedCentralID PMC4433603

  • Ethics Consultation in Pediatrics: Long-Term Experience From a Pediatric Oncology Center AMERICAN JOURNAL OF BIOETHICS Johnson, L., Church, C. L., Metzger, M., Baker, J. N. 2015; 15 (5): 3-17

    Abstract

    There is little information about the content of ethics consultations (EC) in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records (2000-2011) at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations provided guidance in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is needed on the role of ethics consultation in pediatrics.

    View details for DOI 10.1080/15265161.2015.1021965

    View details for Web of Science ID 000354545400002

    View details for PubMedID 25970382

    View details for PubMedCentralID PMC4685463

  • Does Phase 1 Trial Enrollment Preclude Quality End-of-Life Care? Phase 1 Trial Enrollment and End-of-Life Care Characteristics in Children With Cancer CANCER Levine, D. R., Johnson, L., Mandrell, B. N., Yang, J., West, N. K., Hinds, P. S., Baker, J. N. 2015; 121 (9): 1508-1512

    Abstract

    End-of-life care (EOLC) discussions and treatment-related decisions, including phase 1 trial enrollment, in patients with incurable disease are complex and can influence the quality of EOLC received. The current study was conducted in pediatric oncology patients to determine whether end-of-life characteristics differed between those who were and were not enrolled in a phase 1 trial.The authors reviewed the medical records of 380 pediatric oncology patients (aged <22 years at the time of death) who died during a 3.5-year period. Of these, 103 patients with hematologic malignancies were excluded. A total of 277 patients with a diagnosis of a brain tumor or other solid tumor malignancy were divided into 2 groups based on phase 1 trial enrollment: a phase 1 cohort (PIC; 120 patients) and a non-phase 1 cohort (NPIC; 157 patients). The EOLC characteristics of these 2 cohorts were compared using regression analysis and chi-square testing.A comparison of patients in the PIC and NPIC revealed no significant differences in either demographic characteristics (including sex, race, religious affiliation, referral origin, diagnosis, or age at diagnosis, with the exception of age at the time of death [P =.03]) or in EOLC indices (such as use or timing of do not attempt resuscitation orders, hospice use or length of stay, forgoing life-sustaining therapies, location of death, time from first EOLC discussion to death, and total number of EOLC discussions).The results of the current study of a large cohort of deceased pediatric cancer patients indicate that enrollment on a phase 1 trial does not affect EOLC characteristics, suggesting that quality EOLC can be delivered regardless of phase 1 trial participation.

    View details for DOI 10.1002/cncr.29230

    View details for Web of Science ID 000353357000023

    View details for PubMedID 25557437

    View details for PubMedCentralID PMC4685940

  • Bereaved Parents' Intentions and Suggestions about Research Autopsies in Children with Lethal Brain Tumors JOURNAL OF PEDIATRICS Baker, J., Windham, J. A., Hinds, P. S., Gattuso, J. S., Mandrell, B., Gajjar, P., West, N. K., Hammarback, T., Broniscer, A. 2013; 163 (2): 581-586

    Abstract

    To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process.A prospective multicenter study was conducted to collect tumor tissue by autopsy of children with diffuse intrinsic pontine glioma. In the study, parents completed a questionnaire after their child's death to describe the purpose for, hopes (ie, desired outcomes of), and regrets about their participation in autopsy-related research. Parents also suggested ways to improve autopsy-related discussions. A semantic content analytic method was used to analyze responses and identify themes within and across parent responses.Responses from 33 parents indicated that the main reasons for participating in this study were to advance medical knowledge or find a cure, a desire to help others, and choosing as their child would want. Parents hoped that participation would help others or help find a cure as well as provide closure. Providing education/anticipatory guidance and having a trusted professional sensitively broach the topic of autopsy were suggestions to improve autopsy discussions. All parents felt that study participation was the right decision, and none regretted it; 91% agreed that they would make the choice again.Because autopsy can help advance scientific understanding of the disease itself and because parents reported having no regret and even cited benefits, researchers should be encouraged to continue autopsy-related research. Parental perceptions about such studies should be evaluated in other types of pediatric diseases.

    View details for DOI 10.1016/j.jpeds.2013.01.015

    View details for Web of Science ID 000322959500054

    View details for PubMedID 23433673

    View details for PubMedCentralID PMC3664241

  • Implementation and Evaluation of an Automated Patient Death Notification Policy at a Tertiary Pediatric Oncology Referral Center JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Baker, J. N., Harper, J., Kane, J. R., Kane, J. R., Hicks, J., Ward, D., Hinds, P. S., Spunt, S. L. 2011; 42 (5): 652-656

    Abstract

    Not knowing about a child's death can result in poor quality of care coordination among staff and poor quality bereavement care for families. The purpose of this project was to create, implement, and evaluate an automated Patient Death Notification policy and procedure (PDNPP).Baseline and follow-up surveys of clinical staff.Implementation of a PDNPP that created an automated, systematic process for staff notification of patient deaths.Ninety-six percent of the staff rated the PDNPP as a significant improvement; 91% reported being "very" or "somewhat" satisfied with the PDNPP, whereas only 44% of the staff were satisfied with the process at baseline.Implementation of an automated PDNPP was feasible and improved staff satisfaction about how they were informed of patient deaths. Staff also reported being notified about patient deaths more quickly, performing their jobs more efficiently, being able to avoid doing something that might upset the deceased patient's family, and being able to better provide support to bereaved families.

    View details for DOI 10.1016/j.jpainsymman.2011.07.002

    View details for Web of Science ID 000297011800002

    View details for PubMedID 22045367

    View details for PubMedCentralID PMC3463934

  • Changes in Medical Care at a Pediatric Oncology Referral Center after Placement of a Do-Not-Resuscitate Order JOURNAL OF PALLIATIVE MEDICINE Baker, J. N., Kane, J. R., Rai, S., Howard, S. C., Hinds, P. S., PCS Res Working Grp 2010; 13 (11): 1349-1352

    Abstract

    Parents may fear that a do-not-resuscitate (DNR) order will result in reduction of the level, quality, and priority of their child's medical care. We therefore assessed medical care that was continued, added, and discontinued after a DNR order was placed in the medical record.Retrospective review of the charts of 200 pediatric oncology patients at St. Jude Children's Research Hospital who died between July 1, 2001 and February 28, 2005, were younger than 22 years old at death, and had a documented DNR order. Medical interventions that were added (between the DNR order and death), continued (not discontinued between 24 hours before and 72 hours after DNR), and discontinued (within 72 hours after DNR) were identified and compared by using binomial proportions.With the exception of chemotherapy, the studied medical interventions that patients were receiving at the time of the DNR order were continued in 66.7% to 99.3% of cases. Chemotherapy was continued in 33.3%. The most frequently added interventions were oxygen, steroids, and pain medicine. The most frequently discontinued interventions were laboratory draws, chemotherapy, antibiotics, and parenteral nutrition.In this cohort of pediatric oncology patients, the medical interventions being received were continued with a high frequency after placement of a DNR order. Chemotherapy was continued only in a minority of patients, possibly signifying a shift in goals. These findings may help to reassure families that a DNR order need not result in a change in any of their child's medical therapies which appropriately advance the defined goals of care.

    View details for DOI 10.1089/jpm.2010.0177

    View details for Web of Science ID 000284397000010

    View details for PubMedID 21034279

    View details for PubMedCentralID PMC3001240

  • Decision Making by Parents of Children With Incurable Cancer Who Opt for Enrollment on a Phase I Trial Compared With Choosing a Do Not Resuscitate/Terminal Care Option JOURNAL OF CLINICAL ONCOLOGY Maurer, S. H., Hinds, P. S., Spunt, S. L., Furman, W. L., Kane, J. R., Baker, J. N. 2010; 28 (20): 3292-3298

    Abstract

    Parents of children with incurable cancer make complex and difficult decisions about remaining treatment options. We compared the self-reported rationale, good parent definition, and desired clinical staff behaviors of parents who recently decided for phase I (P1) chemotherapy with parents who chose a do not resuscitate (DNR) or terminal care (TC) option.Sixty-two parents of 58 children were asked for the basis of their decision, their definition of a good parent, and what staff behaviors supported their good parent role. After semantic content analysis, results were compared in the P1 versus DNR/TC groups. These categories were mutually exclusive but did not necessarily represent an either/or decision.Thirty-one decisions were for P1 chemotherapy and 27 for DNR/TC. Median survival time after study enrollment was greater in the P1 group (0.4 v 0.1 years). Most P1 group parents reported having felt compelled to continue cancer-directed therapy (71% v 7%), whereas those who opted for DNR/TC cited quality of life (QOL; 74% v 3%) and patient wishes (67% v 13%). Decision factors common to both groups were medical facts, doing right, and others' opinions. Both groups believed that a good parent did right, provided support and presence, and sacrificed for the child. The groups desired similar support from clinicians and expressed gratitude.Despite similar definitions of a good parent and desired staff behaviors, parents in the P1 group reported having felt compelled to continue cancer-directed therapy, whereas QOL and patient wishes were emphasized in decisions for DNR/TC.

    View details for DOI 10.1200/JCO.2009.26.6502

    View details for Web of Science ID 000279637600015

    View details for PubMedID 20498399

    View details for PubMedCentralID PMC2903327

  • Race Does Not Influence Do-Not-Resuscitate Status or the Number or Timing of End-of-Life Care Discussions at a Pediatric Oncology Referral Center JOURNAL OF PALLIATIVE MEDICINE Baker, J. N., Rai, S., Liu, W., Srivastava, K., Kane, J. R., Zawistowski, C. A., Burghen, E. A., Gattuso, J. S., West, N., Althoff, J., Funk, A., Hinds, P. S. 2009; 12 (1): 71-76

    Abstract

    End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died.We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. Chi(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who self-identified as black or white.We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48).When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.

    View details for DOI 10.1089/jpm.2008.0172

    View details for Web of Science ID 000262827900018

    View details for PubMedID 19284266

    View details for PubMedCentralID PMC2941671

  • Integration of palliative care practices into the ongoing care of children with cancer: Individualized care planning and coordination PEDIATRIC CLINICS OF NORTH AMERICA Baker, J. N., Hinds, P. S., Spunt, S. L., Barfield, R. C., Allen, C., Powell, B. C., Anderson, L. H., Kane, J. R. 2008; 55 (1): 223-?

    Abstract

    Most parents of children with cancer have dual primary goals: a primary cancer-directed goal of cure and a primary comfort-related goal of lessening suffering. Early introduction of palliative care principles and practices into their child's treatment is respectful and supportive of these goals. The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer. Application of the model helps clinicians to generate a comprehensive individualized care plan that is implemented through Individualized Care Coordination processes as detailed here. Clinicians' strong desire to provide compassionate, competent, and sensitive care to the seriously ill child and the child's family can be effectively translated into clinical practice through these processes.

    View details for DOI 10.1016/j.pcl.2007.10.011

    View details for Web of Science ID 000253794400012

    View details for PubMedID 18242323

    View details for PubMedCentralID PMC2577813

  • National Survey of Pediatric Residency Program directors and residents regarding education in palliative medicine and end-of-life care JOURNAL OF PALLIATIVE MEDICINE Baker, J. N., Torkildson, C., Baillargeon, J. G., Olney, C. A., Kane, J. R. 2007; 10 (2): 420-429

    Abstract

    To determine how palliative and end-of-life care can best be incorporated into the training of pediatric residents.From 2001 to 2002, we surveyed 246 directors and 235 residents of pediatric residency programs. We elicited responses regarding (1) perceived relevance of pediatric palliative care, (2) residents' exposure to palliative medicine, (3) competency of faculty and matriculating residents in palliative care, (4) core palliative medicine competencies, and (5) the best teaching/learning format for palliative care.Fifty-five directors (22.4%) and 98 residents (42.0%) responded. More than three quarters of directors (78.1%) agreed with the statement that palliative care as a competency is "somewhat" to "very" important. Approximately one third (32.7%) agreed with the statement that their residents were not clinically exposed to end-of-life care; 99.0% of the residents indicated participation in such care. Almost one third of directors (27.3%) indicated that they had no faculty available to teach palliative care. Only 38.2% agreed with the statement that matriculating residents are competent in palliative medicine while many residents indicated having limited or no training in core palliative care competencies.For palliative care principles to be better incorporated into pediatric practice, they must be incorporated into residency education, optimally through informal teaching and during rounds. Finding ways to teach residents palliative medicine during clinical "teachable moments" and standardizing didactic curricula should become a priority in palliative and end-of-life care education.

    View details for DOI 10.1089/jpm.2006.0135

    View details for Web of Science ID 000246275900026

    View details for PubMedID 17472514

  • A process to facilitate decision making in pediatric stem cell transplantation: The individualized care planning and coordination model BIOLOGY OF BLOOD AND MARROW TRANSPLANTATION Baker, J. N., Barfield, R., Hinds, P. S., Kane, J. R. 2007; 13 (3): 245-254

    Abstract

    Providers of care for children undergoing stem cell transplantation (SCT) skillfully combine the roles of scientist and clinician. As scientists, they apply scientific methods and disease theory in the creation and testing of new therapies and in the careful observation and exploration of treatment outcomes. As clinicians, they are capable of intuitively delivering care in a patient- and family-centered context of meaning and life values. The specialty of SCT has inherent aspects that make treatment decision making complex and potentially contentious. Having a strategy ready to implement in advance or at the time when treatment decisions need to be made will facilitate and enhance the decision making process for both the health care team and family members. Here we introduce the individualized care planning and coordination (ICPC) model as a practical approach to facilitate ethical and effective decision making in pediatric SCT settings. The ICPC is a 3-step model comprising (1) relationship--understanding the illness experience from the perspective of the patient and family, sharing relevant information, and assessing ongoing needs; (2) negotiation--prognosticating, establishing goals of care, and discussing treatment options; and (3) plan--generating a comprehensive plan of care that includes life and medical plans. Based on a foundation of a care of competence, empathy, compassion, communication, and quality, the ICPC model aims to diminish contentious family-staff interactions that can lead to mistrust and help guide treatment decision making. The ICPC model enhances communication among patients, families, and clinicians by revealing patient and family values and medical and quality-of-life priorities before reaching or even during critical decision points in the transplantation process.

    View details for DOI 10.1016/j.bbmt.2006.11.013

    View details for Web of Science ID 000244849700001

    View details for PubMedID 17317576

  • Author Correction: A joint international consensus statement for measuring quality of survival for patients with childhood cancer. Nature medicine van Kalsbeek, R. J., Hudson, M. M., Mulder, R. L., Ehrhardt, M., Green, D. M., Mulrooney, D. A., Hakkert, J., den Hartogh, J., Nijenhuis, A., van Santen, H. M., Schouten-van Meeteren, A. Y., van Tinteren, H., Verbruggen, L. C., Conklin, H. M., Jacola, L. M., Webster, R. T., Partanen, M., Kollen, W. J., Grootenhuis, M. A., Pieters, R., Kremer, L. C., International Childhood Cancer Outcome Project participants, van Kalsbeek, R. J., den Hartogh, J., van Santen, H. M., van Tinteren, H., Aarsen, F., Adams, M., Adams, T., van den Akker, C., Amman, R., Andrews, S., Armstrong, G., Attarbaschi, A., Azizi, A., van Baarsen, K., Bailey, S., Baker, J., Bakker-Provoost, L., Beek, L., Bekkering, P., van den Bergen, J., van den Bergh, E., Bierings, M., Bishop, M., Bisogno, G., Boatner, J., Boerboom, S., de Bont, J., Boop, F., van den Bos, C., Boshuisen, K., Bouffet, E., Brandsma, R., Ophorst, I. B., Brennan, B., Brennan, R., Bresters, D., Ten Brink, S., Brugieres, L., Burkhardt, B., Calaminus, G., Calkoen, F., Canavera, K., Carmichael, L., Castellino, S., Cepelova, M., Chemaitilly, W., Chisholm, J., Clark, K., Crom, D., Curry, A., DeFeo, B., van Dijk, J., Dixon, S., Dome, J., Donadieu, J., Drenth, B., Dufour, C., Esbenshade, A., Escherich, G., Fay-McClymont, T., Faure-Conter, C., Ferrari, A., Flerlage, J., Foster, K., Frazier, L., Furman, W., Galindo-Rodriguez, C., Gan, H., Gartrell, J., Geller, J., Gidding, C., Jan Godzinsky, Goemans, B., Gorlick, R., Graafland, R., Graf, N., van Grotel, M., Ter Haar, M., de Haas, V., Hagleitner, M., Hale, K., Halsey, C., Hargrave, D., Harman, J., Hasle, H., Haupt, R., Haveman, L., Hawkins, D., van der Heijden, L., Heitink-Polle, K., van den Heuvel-Eibrink, M., Hijiya, N., Hjorth, L., Hoeben, B., Houben, R., Hoving, E., Hulsker, C., Jaspers, A., Johnson, L., Jurbergs, N., Kahalley, L., Karol, S., Kaspers, G., Kaye, E., Kazak, A., Kemps, R., Kepak, T., Khan, R., Klimo, P., Knops, R., Kolb, A., Koopman, R., Kraal, K., Kramm, C., Krasin, M., Lahteenmaki, P., Landman-Parker, J., Lavecchia, J., Lemiere, J., Lenschau, A., Ligthart-Beukhof, C., van Litsenburg, R., Jan Loeffen, Loh, M., Lucas, J., van der Lugt, J., Luttich, P., Madden, R., Madni, A., Maduro, J., van der Mark, S., Markesteijn, A., Mauz-Koerholz, C., Mavinkurve, A., Meijer, L., Merchant, T., Merks, H., Meyer, B., Meyer-Wentrup, F., Meyers, P., Meyers, R., Michiels, E., Minkov, M., de Moerloose, B., Molina, K., Moppett, J., Morgan, K., Morland, B., Mueller, S., Muller, H., Muller, R., Muraca, M., Murphy, S., Nanduri, V., Neel, M., Niemeyer, C., van Noesel, M., O'Brien, M., Orbach, D., Ozyurt, J., van der Pal, H., Papadakis, V., Pappo, A., Pardue, L., Parris, K., Peek, A., Phillips, B., Plasschaert, S., Portegies, M., Potter, B., Qaddoumi, I., Redd, D., Rehorst-Kleinlugtenbelt, L., Ribeiro, R., Roberts, S., Roganovic, J., Rutkowski, S., van de Sande, M., Santana, V., Saslawsky, S., Sawyer, K., Scheinemann, K., Schleiermacher, G., Schmiegelow, K., Schoot, R., Schulte, F., Sehested, A., Sieswerda, I., Skinner, R., Slooff, R., Sluijs, D., van der Sluis, I., Smith, D., Spraker-Perlman, H., Spunt, S., Sulkers, M., Sweeney, T., Taj, M., Takemoto, C., Talleur, A., Taylor, H., Tersteeg, C., Terwisscha, S., Thomas, S., Thomassen, B., Tinkle, C., Tippett, R., Tissing, W., Tonning-Olsson, I., Top, A., Turner, E., Upadhyaya, S., Uyttebroeck, A., Uyuk, G., van de Ven, K., Versluys, B., Verwaaijen, E., Visser, S., van Vliet, J., de Vos-Kerkhof, E., de Vries, A., van Vuurden, D., Wakefield, C., Warren, K., van Wegen Peelen, C., Weiss, A., van de Wetering, M., Whelan, J., Wichink, R., Wiener, L., Wijnen, M., Willard, V., Wilson, T., Windham, J., de Winter, L., Witt, O., Wlodarski, M., Wouters, K., Wouterse, C., Wyrick, K., Zaletel, L. Z., Zaidi, A., van Zanten, J., Zsiros, J., Zwiers, L. 2024

    View details for DOI 10.1038/s41591-024-03065-9

    View details for PubMedID 38778213

  • Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Zalud, K., Collins, G., Baker, J. N., Mack, J. W., Kaye, E. C. 2024; 32 (6): 341

    Abstract

    For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives.Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality.A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls.Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

    View details for DOI 10.1007/s00520-024-08539-7

    View details for PubMedID 38735892

    View details for PubMedCentralID 8286806

  • "Understanding why she had to leave me": The roles of religion and spirituality in narratives of parents grieving the loss of a child to cancer. Death studies Superdock, A. K., Trejo, M., Yang, Y., Torres, C., Blazin, L. J., Baker, J. N., Spraker-Perlman, H. L., Kaye, E. C. 2024: 1-12

    Abstract

    Religion and spirituality often influence how people experience illness, death, and grief. The roles of religion and spirituality for parents who have lost a child to cancer remain underexplored. This study aimed to describe how cancer-bereaved parents talk about religion and spirituality when reflecting on their experiences. Participants whose children died of cancer one to six years prior to participation completed a one-on-one semi-structured interview. Interview transcripts underwent qualitative analysis. Content pertaining to religion and/or spirituality underwent subsequent in-depth analysis to identify themes. Of 30 interviews analyzed, 28 contained religion/spirituality content. Four themes arose: (1) life after death, (2) divine control, (3) evolution of faith after loss, and (4) religious and spiritual interactions within the medical community. The absence of supports for religious and spiritual needs represents a gap in bereavement care. Future work should clarify needs and explore potential interventions.

    View details for DOI 10.1080/07481187.2024.2348059

    View details for PubMedID 38709638

  • Multilevel Characteristics of Cumulative Symptom Burden in Young Survivors of Childhood Cancer. JAMA network open Horan, M. R., Srivastava, D. K., Choi, J., Krull, K. R., Armstrong, G. T., Ness, K. K., Hudson, M. M., Baker, J. N., Huang, I. C. 2024; 7 (5): e2410145

    Abstract

    Symptom burden and its characteristics among survivors of pediatric cancers aged 8 to 18 years remain understudied.To examine the prevalence of symptom burden among young childhood cancer survivors and identify associations with sociodemographic, clinical, and psychological resilience skills, and health-related quality of life (HRQOL).A cross-sectional analysis using data collected from November 1, 2017, to January 31, 2019, in a survivorship clinic at a US-based comprehensive cancer center was conducted. Participants included 302 dyads of children aged 8 to 18 years who survived at least 5 years beyond diagnosis and their primary caregivers. Data analysis was performed from March 13, 2023, to February 29, 2024.Diagnosis, caregiver-reported family conflict, self-reported caregiver anxiety, neighborhood-level social vulnerability, and survivor-reported meaning and purpose.Novel symptom-level burden, integrating the attributes of severity and daily activity interference using the pediatric version of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, global cumulative symptom burden, and HRQOL using the EuroQol-5D. Multinomial logistic regression identified characteristics associated with symptom burden; linear regression assessed symptom burden and HRQOL associations.Among 302 survivors (mean [SD] age, 14.2 [2.9] years, mean [SD] time since diagnosis, 10.9 [2.9] years; 153 [50.7%] male), 186 (62.0%) had low, 77 (25.7%) moderate, and 37 (12.3%) high global cumulative symptom burden. Greater caregiver anxiety was associated with moderate (risk ratio [RR], 1.56; 95% CI, 1.09-2.24) global symptom burden. Greater neighborhood deprivation was associated with moderate global symptom burden (RR, 4.86; 95% CI, 1.29-18.26). Survivors with greater meaning/purpose were less likely to have moderate (RR, 0.42; 95% CI, 0.29-0.61) and high (RR, 0.27; 95% CI, 0.16-0.46) global symptom burden. The burden of individual symptoms displayed similar patterns. Low (Cohen d, -0.60; 95% CI, -0.87 to -0.32) and moderate/high (d, -0.98; 95% CI, -1.53 to -0.43) general pain, moderate/high numbness (d, -0.99; 95% CI, -1.69 to -0.29), and moderate/high worry (d, -0.55; 95% CI, -0.99 to -0.11) were associated with lower HRQOL.In this cross-sectional study of young childhood cancer survivors, symptom burden was prevalent. Caregiver anxiety and disparity-related neighborhood factors were associated with greater symptom burden, whereas meaning and purpose was a protective factor. Greater specific symptom burden contributed to poorer HRQOL. The findings suggest that interventions targeting resilience and neighborhood adversity may alleviate symptom burden and improve HRQOL.

    View details for DOI 10.1001/jamanetworkopen.2024.10145

    View details for PubMedID 38713463

    View details for PubMedCentralID PMC11077392

  • Family characteristics and childcare patterns associated with early social functioning in cancer-bereaved parents. Cancer Snaman, J. M., Chen, L., Mazzola, E., Helton, G., Feifer, D., Broden, E., McCarthy, S., Rosenberg, A. R., Baker, J. N., Wolfe, J. 2024

    Abstract

    Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions.The authors surveyed parents of children who died from cancer at two large centers 6-24 months after death, assessing bereavement experiences using validated and pilot tested tools. Univariable and multivariable logistical regression models were used to examine which family and child demographic, treatment, and end-of-life (EOL) factors were associated with maintained parental social functioning (T scores ≥40 on the Patient-Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities-Short Form questionnaire).One hundred twenty-eight parents of 88 children participated (38% household response rate); most parents identified as female (63%) and White (88%). Parents' median age was 47 years (interquartile range, 10 years); and the median time from the child's death to survey completion was 13 months (interquartile range, 10 months). In multivariate modeling, parents without household material hardship and those who felt prepared for EOL circumstances had increased odds of maintained social functioning (odds ratio, 4.7 [95% confidence interval, 1.6-13.7; p < .004] and 5.5 [95% confidence interval, 1.9-15.9; p < .002], respectively).Parents who felt prepared for their child's EOL and those without household material hardship were more likely to have maintained social functioning in the first 2 years after their child's death. Interventions targeting EOL preparedness and alleviating household material hardship may improve bereavement outcomes.

    View details for DOI 10.1002/cncr.35325

    View details for PubMedID 38620040

  • Using natural language processing to analyze unstructured patient-reported outcomes data derived from electronic health records for cancer populations: a systematic review. Expert review of pharmacoeconomics & outcomes research Sim, J. A., Huang, X., Horan, M. R., Baker, J. N., Huang, I. C. 2024: 1-9

    Abstract

    Patient-reported outcomes (PROs; symptoms, functional status, quality-of-life) expressed in the 'free-text' or 'unstructured' format within clinical notes from electronic health records (EHRs) offer valuable insights beyond biological and clinical data for medical decision-making. However, a comprehensive assessment of utilizing natural language processing (NLP) coupled with machine learning (ML) methods to analyze unstructured PROs and their clinical implementation for individuals affected by cancer remains lacking.This study aimed to systematically review published studies that used NLP techniques to extract and analyze PROs in clinical narratives from EHRs for cancer populations. We examined the types of NLP (with and without ML) techniques and platforms for data processing, analysis, and clinical applications.Utilizing NLP methods offers a valuable approach for processing and analyzing unstructured PROs among cancer patients and survivors. These techniques encompass a broad range of applications, such as extracting or recognizing PROs, categorizing, characterizing, or grouping PROs, predicting or stratifying risk for unfavorable clinical results, and evaluating connections between PROs and adverse clinical outcomes. The employment of NLP techniques is advantageous in converting substantial volumes of unstructured PRO data within EHRs into practical clinical utilities for individuals with cancer.

    View details for DOI 10.1080/14737167.2024.2322664

    View details for PubMedID 38383308

  • Preventing and Treating Pain and Anxiety during Needle-Based Procedures in Children with Cancer in Low- and Middle-Income Countries. Cancers McNeil, M. J., Garcia Quintero, X., Gonzalez, M., Zheng, Y., Ugaz Olivares, C., Morales, R., Boldrini, E., Rebollo de Campos, D., Ferreira, D., Coopasamy, K., Caneba, J., Padernilla, M. L., Friedrichsdorf, S., Baker, J. N., Friedrich, P. 2024; 16 (5)

    Abstract

    Introduction: Children with cancer experience significant pain and anxiety during needle-based procedures. Undertreated pain in children has long-lasting consequences and reduces the efficacy of subsequent analgesic efforts. A validated quality improvement (QI) intervention, known as the "Children's Comfort Promise", includes (1) topical anesthetics, (2) sucrose or breastfeeding for infants, (3) comfort positioning, and (4) distraction techniques, and has been shown to be highly effective in decreasing procedural pain and anxiety in children. However, there is limited data about the adoption, adaptation, and implementation of these interventions in low- and middle-income countries (LMICs). Methods: A QI pilot project utilizing the Model for Improvement of the "Global Comfort Promise" was implemented in four global pediatric cancer hospitals (Lima, Peru; Barretos, Brazil; Pietermaritzburg, South Africa; and Manila, Philippines). Between August 2021 and January 2023, the pilot sites identified a specific aim, co-designed the measurement strategy with St. Jude Children's Research Hospital, and adopted, adapted, and implemented the project at their individual sites. Results: A total of 2,185 different procedures were recorded in the first year of implementation. Most patients were less than 10 years old (60.5%) and solid tumors (37.9%) were the most common diagnosis. Overall, healthcare professionals (98.3%) were satisfied with the procedures. Parents and patients reported that only 33.7% of patients experienced pain during the procedure. All (100%) parents and patients felt the healthcare teams adequately addressed their child's pain. Median self-reported adherence to ≥2 interventions was 98.0%. Challenges to the implementation of the QI initiative included lack of training, turnover of the medical staff, maintaining staff enthusiasm, and access to topical anesthetics. Each site had unique change ideas to implement the initiative. Conclusions: This multi-site, multi-country QI initiative was feasible and was successfully adopted, adapted, and implemented in the LMIC context to improve procedural pain in children (Global Comfort Promise). Additionally, this intervention resulted in high satisfaction of both healthcare professionals and patients/families. Further work is needed to overcome the challenges of topical anesthetic access and education of the workforce. Additional plans include modifying the Global Comfort Promise to include high-quality communication and expanding to additional sites with further refinement of the implementation strategy.

    View details for DOI 10.3390/cancers16051025

    View details for PubMedID 38473383

  • Children with cancer at the end of life in a middle-income country: integrated pediatric palliative care improves outcomes. BMC palliative care Cuervo-Suarez, M. I., Cleves, D., Duque-Nieto, N., Claros-Hulbert, A., Molina-Gomez, K., Bolanos-Lopez, J. E., Tello-Cajiao, M. E., Baker, J. N., McNeil, M. J., Garcia-Quintero, X. 2024; 23 (1): 31

    Abstract

    BACKGROUND: In 2020, the Global Cancer Observatory reported 280,000 cases of childhood cancer worldwide, with a higher burden of disease and mortality rates in low- and middle-income countries. In 2022, the National Institute of Health reported 1708 new cases of childhood cancer in Colombia and an overall survival rate of approximately 55%. The aim of this study is to compare outcomes in children with cancer in the hospital setting during the last 72h of life who received concurrent Pediatric Palliative Care (PPC) versus oncology care alone.METHODS: An observational descriptive study was conducted between January 2013 and June 2022 in a center for pediatric patients with oncological diagnoses. In 2017, the PPC team was created. Patients between 28 days and 17 years of age who were hospitalized at least 72h before death were included. A retrospective review of the medical records of patients in the last 72h of life was performed. Two cohorts were established: oncology-alone group received exclusive management by oncology, and oncology and PPC received concurrent oncology and PPC management since the diagnosis.RESULTS: We evaluated 257 medical records of deceased pediatric patients with cancer diagnoses. For the first cohort (2013-2017), 136 patients were included; for the second cohort (2018 and 2022), 121 patients were evaluated. The most frequent diagnosis was leukemia [47.1% (n=121)]. No significant difference was found in either group between dyspnea, pain, and seizures. Dyspnea was the most frequent symptom in both groups. Agitation and anxiety were reported more frequently in children from the oncology-alone group (22.1% and 13.2%, respectively). The oncology and PPC group received more psychology and social work consultation (94.2% and 70.2% vs. 84.6 and 54.4% in the oncology alone group) and had a higher percentage of advance care planning (79.3% vs. 62.5% in the oncology alone group).CONCLUSIONS: This retrospective study highlights that PPC at the end of life (EoL) offers a holistic approach to the physical and psychosocial symptoms experienced by children with cancer; these patients received more comfort through symptom management and less aggressive treatment at the EoL. The availability of a PPC team may contribute to improvements in the quality of end-of-life care.TRIAL REGISTRATION: retrospectively registered.

    View details for DOI 10.1186/s12904-024-01354-1

    View details for PubMedID 38302931

  • Grief and Bereavement Support for Parents in Low- or Middle-Income Countries: a Systematic Review. Journal of pain and symptom management Pedraza, E. C., Vokinger, A. K., Cleves, D., Michel, G., Wrigley, J., Baker, J. N., Garcia-Quintero, X., McNeil, M. J. 2024

    Abstract

    INTRODUCTION: The death of a child may be the most traumatic event a family can experience. Bereavement care for parents is essential for their physical and mental well-being and is a psychosocial standard of care. Childhood mortality is higher in low- or middle-income countries (LMICs); however, little is known regarding bereavement support or interventions for parents in LMICs.AIM: To identify programs, services, initiatives, or interventions offered to bereaved parents in LMICs.METHODS: A systematic search was executed following the Preferred Reported Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Articles from LMICs describing interventions, programs, or resources provided to parents after the death of a child (0-18 years old) from any cause were included. Extracted data was categorized by demographics, study design, outcomes, and quality assessment using the McGill Mixed Methods Appraisal Tool (MMAT).RESULTS: We retrieved 4428 papers and screened their titles and abstracts, 36 articles were selected for full-text assessment, resulting in nine articles included in the final analysis. Most interventions described support for parents whose child died during the prenatal or neonatal period. The primary interventions included psychological counseling, creating mementos (such as photographs or footprints), and bereavement workshops. Only one paper described a fully established bereavement program for parents. Eight of the papers met high-quality criteria.DISCUSSION: Although bereavement care is crucial for parents whose child has died, only a few studies have documented bereavement interventions in LMICs. More research may help with bereavement program implementation and improved care for bereaved parents in LMICs.

    View details for DOI 10.1016/j.jpainsymman.2024.01.023

    View details for PubMedID 38244706

  • Factors influencing parents' choice of palliative treatment goals for children with relapsed or refractory neuroblastoma: A multi-site longitudinal survey study CANCER Kaye, E. C., Smith, J., Zhou, Y., Bagatell, R., Baker, J. N., Cohn, S. L., Diller, L. R., Bender, J., Granger, M., Marachelian, A., Park, J. R., Rosenberg, A. R., Shusterman, S., Twist, C. J., Mack, J. W. 2023: 1101-1111

    Abstract

    Many parents of children with advanced cancer report curative goals and continue intensive therapies that can compound symptoms and suffering. Factors that influence parents to choose palliation as the primary treatment goal are not well understood. The objective of this study was to examine experiences impacting parents' report of palliative goals adjusted for time. The authors hypothesized that awareness of poor prognosis, recall of oncologists' prognostic disclosure, intensive treatments, and burdensome symptoms and suffering would influence palliative goal-setting.The authors collected prospective, longitudinal surveys from parents of children with relapsed/refractory neuroblastoma at nine pediatric cancer centers across the United States, beginning at relapse and continuing every 3 months for 18 months or until death. Hypothesized covariates were examined for possible associations with parental report of palliative goals. Generalized linear mixed models were used to evaluate factors associated with parents' report of palliative goals at different time points.A total of 96 parents completed surveys. Parents were more likely to report a primary goal of palliation when they recalled communication about prognosis by their child's oncologist (odds ratio [OR], 52.48; p = .010). Treatment intensity and previous ineffective therapeutic regimens were not associated with parents' report of palliative goals adjusted for time. A parent who reported new suffering for their child was less likely to report palliative goals (OR, 0.13; p = .008).Parents of children with poor prognosis cancer may not report palliative goals spontaneously in the setting of treatment-related suffering. Prognostic communication, however, does influence palliative goal-setting. Evidence-based interventions are needed to encourage timely, person-centered prognostic disclosure in the setting of advanced pediatric cancer.Many parents of children with poor-prognosis cancer continue to pursue curative treatments that may worsen symptoms and suffering. Little is known about which factors influence parents to choose palliative care as their child's main treatment goal. To explore this question, we asked parents of children with advanced neuroblastoma across the United States to complete multiple surveys over time. We found that the intensity of treatment, number of treatments, and suffering from treatment did not influence parents to choose palliative goals. However, when parents remembered their child's oncologist talking about prognosis, they were more likely to choose palliative goals of care.

    View details for DOI 10.1002/cncr.35149

    View details for Web of Science ID 001125876000001

    View details for PubMedID 38100619

    View details for PubMedCentralID PMC10939929

  • Author Correction: A joint international consensus statement for measuring quality of survival for patients with childhood cancer. Nature medicine van Kalsbeek, R. J., Hudson, M. M., Mulder, R. L., Ehrhardt, M., Green, D. M., Mulrooney, D. A., Hakkert, J., den Hartogh, J., Nijenhuis, A., van Santen, H. M., Schouten-van Meeteren, A. Y., van Tinteren, H., Verbruggen, L. C., Conklin, H. M., Jacola, L. M., Webster, R. T., Partanen, M., Kollen, W. J., Grootenhuis, M. A., Pieters, R., Kremer, L. C., International Childhood Cancer Outcome Project participants, van Kalsbeek, R. J., den Hartogh, J., van Santen, H. M., van Tinteren, H., Aarsen, F., Adams, M., Adams, T., van den Akker, C., Amman, R., Andrews, S., Armstrong, G., Attarbaschi, A., Azizi, A., van Baarsen, K., Bailey, S., Baker, J., Bakker-Provoost, L., Beek, L., Bekkering, P., van den Bergen, J., van den Bergh, E., Bierings, M., Bishop, M., Bisogno, G., Boatner, J., Boerboom, S., de Bont, J., Boop, F., van den Bos, C., Bouffet, E., Brandsma, R., Ophorst, I. B., Brennan, B., Brennan, R., Bresters, D., Ten Brink, S., Brugieres, L., Burkhardt, B., Calaminus, G., Calkoen, F., Canavera, K., Carmichael, L., Castellino, S., Cepelova, M., Chemaitilly, W., Chisholm, J., Clark, K., Crom, D., Curry, A., DeFeo, B., van Dijk, J., Dixon, S., Dome, J., Donadieu, J., Drenth, B., Dufour, C., Esbenshade, A., Escherich, G., Fay-McClymont, T., Faure-Conter, C., Ferrari, A., Flerlage, J., Foster, K., Frazier, L., Furman, W., Galindo-Rodriguez, C., Gan, H., Gartrell, J., Geller, J., Gidding, C., Jan Godzinsky, Goemans, B., Gorlick, R., Graafland, R., Graf, N., van Grotel, M., Ter Haar, M., de Haas, V., Hagleitner, M., Hale, K., Halsey, C., Hargrave, D., Harman, J., Hasle, H., Haupt, R., Haveman, L., Hawkins, D., van der Heijden, L., Heitink-Polle, K., van den Heuvel-Eibrink, M., Hijiya, N., Hjorth, L., Hoeben, B., Houben, R., Hoving, E., Hulsker, C., Jaspers, A., Johnson, L., Jurbergs, N., Kahalley, L., Karol, S., Kaspers, G., Kaye, E., Kazak, A., Kemps, R., Kepak, T., Khan, R., Klimo, P., Knops, R., Kolb, A., Koopman, R., Kraal, K., Kramm, C., Krasin, M., Lahteenmaki, P., Landman-Parker, J., Lavecchia, J., Lemiere, J., Lenschau, A., Ligthart-Beukhof, C., van Litsenburg, R., Jan Loeffen, Loh, M., Lucas, J., van der Lugt, J., Luttich, P., Madden, R., Madni, A., Maduro, J., van der Mark, S., Markesteijn, A., Mauz-Koerholz, C., Mavinkurve, A., Meijer, L., Merchant, T., Merks, H., Meyer, B., Meyer-Wentrup, F., Meyers, P., Meyers, R., Michiels, E., Minkov, M., de Moerloose, B., Molina, K., Moppett, J., Morgan, K., Morland, B., Mueller, S., Muller, H., Muller, R., Muraca, M., Murphy, S., Nanduri, V., Neel, M., Niemeyer, C., O'Brien, M., Orbach, D., Ozyurt, J., van der Pal, H., Papadakis, V., Pappo, A., Pardue, L., Parris, K., Peek, A., Phillips, B., Plasschaert, S., Portegies, M., Potter, B., Qaddoumi, I., Redd, D., Rehorst-Kleinlugtenbelt, L., Roberts, S., Roganovic, J., Rutkowski, S., van de Sande, M., Santana, V., Saslawsky, S., Sawyer, K., Scheinemann, K., Schleiermacher, G., Schmiegelow, K., Schoot, R., Schulte, F., Sehested, A., Sieswerda, I., Skinner, R., Slooff, R., Sluijs, D., van der Sluis, I., Smith, D., Spraker-Perlman, H., Spunt, S., Sulkers, M., Sweeney, T., Taj, M., Takemoto, C., Talleur, A., Taylor, H., Tersteeg, C., Terwisscha, S., Thomas, S., Thomassen, B., Tinkle, C., Tippett, R., Tissing, W., Tonning-Olsson, I., Top, A., Turner, E., Upadhyaya, S., Uyttebroeck, A., Uyuk, G., van de Ven, K., Versluys, B., Verwaaijen, E., Visser, S., van Vliet, J., de Vos-Kerkhof, E., de Vries, A., van Vuurden, D., Wakefield, C., Warren, K., van Wegen Peelen, C., Weiss, A., van de Wetering, M., Whelan, J., Wichink, R., Wiener, L., Wijnen, M., Willard, V., Wilson, T., Windham, J., de Winter, L., Witt, O., Wlodarski, M., Wouters, K., Wouterse, C., Wyrick, K., Zaletel, L. Z., Zaidi, A., van Zanten, J., Zsiros, J., Zwiers, L. 2023

    View details for DOI 10.1038/s41591-023-02753-2

    View details for PubMedID 38092898

  • Author Correction: A joint international consensus statement for measuring quality of survival for patients with childhood cancer. Nature medicine van Kalsbeek, R. J., Hudson, M. M., Mulder, R. L., Ehrhardt, M., Green, D. M., Mulrooney, D. A., Hakkert, J., den Hartogh, J., Nijenhuis, A., van Santen, H. M., Schouten-van Meeteren, A. Y., van Tinteren, H., Verbruggen, L. C., Conklin, H. M., Jacola, L. M., Webster, R. T., Partanen, M., Kollen, W. J., Grootenhuis, M. A., Pieters, R., Kremer, L. C., International Childhood Cancer Outcome Project participants, den Hartogh, J., van Kalsbeek, R. J., van Santen, H. M., van Tinteren, H., Aarsen, F., Adams, M., Adams, T., van den Akker, C., Amman, R., Andrews, S., Armstrong, G., Atterbaschi, A., Azizi, A., van Baarsen, K., Bailey, S., Baker, J., Bakker-Provoost, L., Beek, L., Bekkering, P., van den Bergen, J., van den Bergh, E., Bierings, M., Bishop, M., Bisogno, G., Boatner, J., Boerboom, S., de Bont, J., Boop, F., van den Bos, C., Bouffet, E., Brandsma, R., Ophorst, I. B., Brennan, B., Brennan, R., Bresters, D., Ten Brink, S., Brugieres, L., Burkhardt, B., Calaminus, G., Calkoen, F., Canavera, K., Carmichael, L., Castellino, S., Cepelova, M., Chemaitilly, W., Chisholm, J., Clark, K., Conklin, H., Crom, D., Curry, A., DeFeo, B., van Dijk, J., Dixon, S., Dome, J., Donadieu, J., Drenth, B., Dufour, C., Esbenshade, A., Escherich, G., Fay-McClymont, T., Faure-Conter, C., Ferrari, A., Flerlage, J., Foster, K., Frazier, L., Furman, W., Galindo-Rodriguez, C., Gan, H., Gartrell, J., Geller, J., Gidding, C., Godzinsky, J., Goemans, B., Gorlick, R., Graafland, R., Graf, N., Green, D., Grootenhuis, M., van Grotel, M., Ter Haar, M., de Haas, V., Hagleitner, M., Hale, K., Halsey, C., Hargrave, D., Harman, J., Hasle, H., Haupt, R., Haveman, L., Hawkins, D., van der Heijden, L., Heitink-Polle, K., van den Heuvel-Eibrink, M., Hijiya, N., Hjorth, L., Hoeben, B., Houben, R., Hoving, E., Hudson, M., Hulsker, C., Jacola, L., Jaspers, A., Johnson, L., Jurbergs, N., Kahalley, L., van Kalsbeek, R., Karol, S., Kaspers, G., Kaye, E., Kazak, A., Kemps, R., Kepak, T., Khan, R., Klimo, P., Knops, R., Kolb, A., Kollen, W., Koopman, R., Kraal, K., Kramm, C., Krasin, M., Kremer, L., Lahteenmaki, P., Landman-Parker, J., Lavecchia, J., Lemiere, J., Lenschau, A., Ligthart-Beukhof, C., van Litsenburg, R., Loeffen, J., Loh, M., Lucas, J., van der Lugt, J., Luttich, P., Madden, R., Madni, A., Maduro, J., van der Mark, S., Markesteijn, A., Mauz-Koerholz, C., Mavinkurve, A., Meijer, L., Merchant, T., Merks, H., Meyer, B., Meyer-Wentrup, F., Meyers, P., Meyers, R., Michiels, E., Minkov, M., de Moerloose, B., Molina, K., Moppett, J., Morgan, K., Morland, B., Mueller, S., Mulder, R., Muller, H., Muller, R., Mulrooney, D., Muraca, M., Murphy, S., Nanduri, V., Neel, M., Niemeyer, C., O'Brien, M., Orbach, D., Ozyurt, J., van der Pal, H., Papadakis, V., Pappo, A., Pardue, L., Parris, K., Peek, A., Phillips, B., Plasschaert, S., Portegies, M., Potter, B., Qaddoumi, I., Redd, D., Rehorst-Kleinlugtenbelt, L., Roberts, S., Roganovic, J., Rutkowski, S., van de Sande, M., Santana, V., van Santen, H., Saslawsky, S., Sawyer, K., Scheinemann, K., Schleiermacher, G., Schmiegelow, K., Schoot, R., Schouten-van Meeteren, A., Schulte, F., Sehested, A., Sieswerda, I., Skinner, R., Slooff, R., Sluijs, D., van der Sluis, I., Smith, D., Spraker-Perlman, H., Spunt, S., Sulkers, M., Sweeney, T., Taj, M., Takemoto, C., Talleur, A., Taylor, H., Tersteeg, C., Terwisscha, S., Thomas, S., Thomassen, B., Tinkle, C., Tippett, R., Tissing, W., Tonning-Olsson, I., Top, A., Turner, E., Upadhyaya, S., Uyttebroeck, A., Uyuk, G., van de Ven, K., Verbruggen, L., Versluys, B., Verwaaijen, E., Visser, S., van Vliet, J., de Vos-Kerkhof, E., de Vries, A., van Vuurden, D., Wakefield, C., Warren, K., van Wegen Peelen, C., Weiss, A., van de Wetering, M., Whelan, J., Wichink, R., Wiener, L., Wijnen, M., Willard, V., Wilson, T., Windham, J., de Winter, L., Witt, O., Wlodarski, M., Wouters, K., Wouterse, C., Wyrick, K., Zaletel, L. Z., Zaidi, A., van Zanten, J., Zsiros, J., Zwiers, L. 2023

    View details for DOI 10.1038/s41591-023-02651-7

    View details for PubMedID 37963955

  • Agreement and disagreement between child-caregiver symptom and function reports in pediatric oncology PEDIATRIC BLOOD & CANCER Weaver, M. S., Wang, J., Reeve, B. B., Porter, A. S., Baker, J. N., Mack, J. W., Thompson, A. L., Wiener, L., Grossoehme, D. H., Hinds, P. S. 2024; 71 (1): e30710

    Abstract

    The use of patient-reported outcomes (PRO) is increasing in pediatric clinical practice and research, including in clinical trials. Treatment teams are now able to discern differences in symptom and function reports between children with cancer and their family caregivers. Few studies, however, have quantified such differences.Children and caregivers were matched to create a dyad sample, and child/caregiver agreement of responses to the Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric symptom and function measures were examined using the established minimally important difference (MID) value (three points) derived from these measures. Latent class analysis (LCA) was then used to analyze the status/patterns of response agreement.A total of 430 dyadic cases (dyads) were used for LCA modeling. Three classes of child-caregiver concordance resulted: (a) Agreement-caregiver and child within one MID (200 dyads); (b) Disagreement-caregiver underestimating symptoms (47 dyads with caregiver scores more than 1 MID lower than the child scores); and (c) Disagreement-caregiver overestimating symptoms (183 dyads with caregiver scores more than 1 MID higher than child scores).As PRO use increases in pediatric oncology, clinician identification of child/caregiver differences on symptom and function reports will help to distinguish family perceptions of cancer treatment impact. The treatment goal, in addition to mitigating symptom and function treatment-related burdens for the child and caregiver, may now also be to discern the direction and clinical meaning of the difference within the child-parent dyad.

    View details for DOI 10.1002/pbc.30710

    View details for Web of Science ID 001079590800001

    View details for PubMedID 37828816

  • Physician Perceptions of and Barriers to Pediatric Palliative Care for Children With Cancer in Brazil JCO GLOBAL ONCOLOGY McNeil, M. J., Godfrey, A., Loggetto, P., de Oliveira Junior, A., Job, G., Boldrini, E., Costa Murra, G., Geronutti Ayub, D., Oliveira de Lima, A., Andrade de Almeida, A., Garcia, J., Costa Neves do Amaral, A., Cunha Ferreira e Fonseca, I., Friedrich, P., Metzger, M. L., Devidas, M., Agulnik, A., Baker, J. N., ADAPT Brazil Team 2023; 9: e2300057

    Abstract

    Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early integration is necessary to develop PPC in Brazil.The Assessing Doctors' Attitudes on Palliative Treatment survey was modified for use in Brazil. The survey was open from January 2022 to June 2022 and distributed to physicians of all specialties from participating institutions who treat children with cancer. Statistical analysis was complemented by qualitative analysis of open-ended responses.A total of 272 respondents participated. Most respondents reported access to PPC experts for consultation (77.2%) and 34.5% indicated previous palliative care training. Physician knowledge of PPC was generally aligned with WHO guidance (median alignment, 93.0%; range, 80.5%-98.2%). However, about half (53.3%) felt comfortable addressing physical needs of patients receiving PPC, 35.3% addressing emotional needs, 25.8% addressing spiritual needs, and 33.5% addressing grief and bereavement needs. Most respondents (65.4%) felt palliative care should be involved from diagnosis, but only 10.3% stated that this occurred in their setting. The most important barriers identified were physician discomfort (89.0%), limited physician knowledge (88.6%), and lack of home-based services (83.8%).Despite a strong understanding of the role of palliative care, physicians in Brazil reported low confidence delivering PPC to children with cancer. Additionally, physicians generally believed that PPC should be integrated earlier in the disease trajectory of children with cancer. This work will direct educational and capacity building initiatives to ensure greater access to high-quality PPC for children with cancer in Brazil to address patient and family suffering.

    View details for DOI 10.1200/GO.23.00057

    View details for Web of Science ID 001137149100099

    View details for PubMedID 37535886

    View details for PubMedCentralID PMC10581636

  • Communication of Early Integration of Palliative Care for Children With Cancer in Latin America: The Care as a Vessel Metaphor JCO GLOBAL ONCOLOGY Garcia-Quintero, X., Cleves, D., Cuervo, M., McNeil, M., Salek, M., Robertson, E. G., Gomez, W., Baker, J. N., Kaye, E. C. 2023; 9: e2200281

    View details for DOI 10.1200/GO.22.00281

    View details for Web of Science ID 001137149100022

    View details for PubMedID 36595733

    View details for PubMedCentralID PMC10166418

  • Mixed-methods analysis of decisional regret in parents following a child's death from cancer PEDIATRIC BLOOD & CANCER Feifer, D., Broden, E. G., Xiong, N., Mazzola, E., Baker, J. N., Wolfe, J., Snaman, J. M. 2023; 70 (10): e30541

    Abstract

    Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret.We used a convergent mixed-methods design including quantitative items and free-text responses from a survey of parents 6-24 months from their child's death from cancer. Parents expressed whether they had regrets about decisions during the end of their child's life (Yes/No/I don't know) and elaborated with free text. Results of qualitative content analysis of free-text responses guided development and interpretation of quantitative multinomial models.Parents (N = 123 surveys, N = 84 free text) primarily identified as White (84%), mothers (63%), and primary caregivers (69%) for their children. Forty-seven (38%) parents reported decisional regret, 61 (49%) indicated no regret, and 15 (12%) were unsure. Mothers (relative risk [RR]: 10.3, 95%CI: [1.3, 81.3], p = .03) and parents who perceived greater suffering at the end of their child's life (RR = 3.8, 95%CI: [1.2, 11.7], p = .02) were at increased risk of regret; qualitative evaluation revealed elements of self-blame and difficulty reconciling treatment choices with the ultimate outcome. Preparation for symptoms was associated with decreased risk of regret (RR = 0.1, 95%CI: [0, .3], p < .01) with qualitative reflections focused on balanced teamwork that alerted parents for what to expect and how to make meaningful final memories.Though decisional regret is common among cancer-bereaved parents, mothers and those who perceive more suffering in their children may be at particular risk. Close collaboration between families and clinicians to prepare for symptoms and proactively attend to and minimize suffering may help alleviate decisional regret.

    View details for DOI 10.1002/pbc.30541

    View details for Web of Science ID 001020049900001

    View details for PubMedID 37414728

  • Going Virtual: Adapting an Institutional Annual Bereavement Event During the COVID-19 Pandemic JOURNAL OF PEDIATRICS Zavadil, J., Singh, M., Robertson, E. G., Clark, L., Snaman, J. M., McNeil, M., Acerra, A., Baker, J. N. 2023; 257: 113393

    Abstract

    Our institution's annual bereaved family event was modified to a virtual format during the COVID-19 pandemic. While necessary to comply with physical distancing directives, the transition also provided greater accessibility for families. Virtual events were feasible and appreciated by attendees. Future hybrid bereavement events should be considered to allow families more flexibility and accessibility.

    View details for DOI 10.1016/j.jpeds.2023.03.007

    View details for Web of Science ID 001025183500001

    View details for PubMedID 36940869

    View details for PubMedCentralID PMC10027290

  • A joint international consensus statement for measuring quality of survival for patients with childhood cancer NATURE MEDICINE van Kalsbeek, R., Hudson, M., Mulder, R. L., Ehrhardt, M. M., Green, D., Mulrooney, D., Hakkert, J. C., den Hartogh, J. M., Nijenhuis, A. M., van Santen, H., Schouten-van Meeteren, A. N., van Tinteren, H., Verbruggen, L. A., Conklin, H., Jacola, L., Webster, R., Partanen, M., Kollen, W. J., Grootenhuis, M. M., Pieters, R., Kremer, L. M., Int Childhood Canc Outcome Projec 2023; 29 (6): 1340-1348

    Abstract

    The aim of treating childhood cancer remains to cure all. As survival rates improve, long-term health outcomes increasingly define quality of care. The International Childhood Cancer Outcome Project developed a set of core outcomes for most types of childhood cancers involving relevant international stakeholders (survivors; pediatric oncologists; other medical, nursing or paramedical care providers; and psychosocial or neurocognitive care providers) to allow outcome-based evaluation of childhood cancer care. A survey among healthcare providers (n = 87) and online focus groups of survivors (n = 22) resulted in unique candidate outcome lists for 17 types of childhood cancer (five hematological malignancies, four central nervous system tumors and eight solid tumors). In a two-round Delphi survey, 435 healthcare providers from 68 institutions internationally (response rates for round 1, 70-97%; round 2, 65-92%) contributed to the selection of four to eight physical core outcomes (for example, heart failure, subfertility and subsequent neoplasms) and three aspects of quality of life (physical, psychosocial and neurocognitive) per pediatric cancer subtype. Measurement instruments for the core outcomes consist of medical record abstraction, questionnaires and linkage with existing registries. This International Childhood Cancer Core Outcome Set represents outcomes of value to patients, survivors and healthcare providers and can be used to measure institutional progress and benchmark against peers.

    View details for DOI 10.1038/s41591-023-02339-y

    View details for Web of Science ID 001013172700006

    View details for PubMedID 37322119

    View details for PubMedCentralID 5798235

  • Prognostic Communication Between Parents and Clinicians in Pediatric Oncology: An Integrative Review AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE Ouyang, N., Feder, S. L., Baker, J. N., Knobf, M. 2023: 10499091231183107

    Abstract

    Background: Prognostic communication between clinicians and parents in pediatric oncology is complex. However, no review has exclusively examined research on prognostic communication in pediatric oncology. In this review, we synthesize the evidence on prognostic communication in pediatric oncology and provide recommendations for future research. Methods: We conducted an integrative review searching six databases for studies on prognostic communication in pediatric oncology as of August 2022. We applied descriptive and narrative approaches to data analysis. Results: Fourteen quantitative and five qualitative studies were included. All studies were conducted in Western developed countries. In total, 804 parents of 770 children with cancer were included. Across studies, parents were predominately female, Non-Hispanic White, and had high school or higher levels of education. Most parents reported that prognostic communication was initiated in the first year after their children's diagnosis. High-quality prognostic communication was positively associated with trust and hope and negatively associated with parental distress and decisional regret. In qualitative studies, parents suggested that prognostic communication should be open, ongoing, and delivered with sensitivity. Most studies were of moderate quality. The main gaps included inconsistent definitions of prognostic communication, and a lack of comprehensive and validated measurements, high-quality longitudinal studies, and diverse settings and participants. Conclusions: Clinicians should initiate high-quality prognostic communication early on in clinical practice. Future research should consider conducting high-quality longitudinal studies, developing prognostic communication definitions and measurements, and conducting studies across settings with diverse populations.

    View details for DOI 10.1177/10499091231183107

    View details for Web of Science ID 001007333700001

    View details for PubMedID 37309610

  • Response-shift effects in childhood cancer survivors: A prospective study PSYCHO-ONCOLOGY Huang, I., Sim, J., Srivastava, D., Krull, K. R., Ness, K. K., Robison, L. L., Baker, J. N., Hudson, M. M., Schwartz, C. E. 2023; 32 (7): 1085-1095

    Abstract

    Treatment-related late effects can worsen over time among cancer survivors. Such worsening health states may trigger changes in internal standards, values, or conceptualization of quality-of-life (QOL). This "response-shift" phenomenon can jeopardize the validity of QOL assessment, and misrepresent QOL comparisons over time. This study tested response-shift effects in reporting future-health concerns among childhood cancer survivors who experienced progression in chronic health conditions (CHCs).2310 adult survivors of childhood cancer from St. Jude Lifetime Cohort Study completed a survey and clinical assessment at two or more timepoints. Based on 190 individual CHCs graded for adverse-event severity, global CHC burden was classified as "progression" or "non-progression". QOL was assessed using the SF-36TM eight domains and physical- and mental-component summary scores (PCS, MCS). A single global item measured concerns about future health. Random-effects models comparing survivors with and without progressive global CHC burden (progressors vs. non-progressors) evaluated response-shift effects (recalibration, reprioritization, reconceptualization) in reporting future-health concerns.Compared with non-progressors, progressors were more likely to de-emphasize (or downplay) overall physical and mental health in evaluating future-health concerns (p-values<0.05), indicating recalibration response-shift, and more likely to de-emphasize physical health earlier rather than later in follow-up (p-value<0.05), indicating reprioritization response-shift. There was evidence for a reconceptualization response-shift with progressor classification associated with worse-than-expected future-health concerns and physical health, and better-than-expected pain and role-emotional functioning (p-values<0.05).We identified three types of response-shift phenomena in reporting concerns about future health among childhood cancer survivors. Survivorship care or research should consider response-shift effects when interpreting changes in QOL over time.

    View details for DOI 10.1002/pon.6150

    View details for Web of Science ID 000987090700001

    View details for PubMedID 37189277

    View details for PubMedCentralID PMC10330734

  • ?It?s Hard Not to Have Regrets:? Qualitative Analysis of Decisional Regret in Bereaved Parents JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Feifer, D., Broden, E. G., Baker, J. N., Wolfe, J., Snaman, J. 2023; 65 (5): E399-E407

    Abstract

    Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement.We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement.We analyzed responses from a cross-sectional, dual site study of parents six to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents' responses.A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to five categories: treatments, including those pursued and/or not pursued (n = 57), decision-making processes (n = 35), relationships with their child and care team (n = 26), child suffering (n = 10), and end-of-life characteristics (n = 6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret.Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research.

    View details for DOI 10.1016/j.jpainsymman.2022.12.144

    View details for Web of Science ID 000981611200001

    View details for PubMedID 36641003

  • Determinants of health-related quality-of-life in adult survivors of childhood cancer: integrating personal and societal values through a health utility approach ECLINICALMEDICINE Horan, M. R., Srivastava, D., Bhakta, N., Ehrhardt, M. J., Brinkman, T. M., Baker, J. N., Yasui, Y., Krull, K. R., Ness, K. K., Robison, L. L., Hudson, M. M., Huang, I. 2023; 58: 101921

    Abstract

    Childhood cancer survivors are at elevated risk for poor health-related quality-of-life (HRQOL). Identification of potentially modifiable risk factors associated with HRQOL is needed to inform survivorship care.Participants included 4294 adult childhood cancer survivors from the St. Jude Lifetime Cohort Study who completed a survey and clinical assessment at entry into the survivorship cohort (baseline) and follow-up (median interval: 4.3 years) between 2007 and 2019. The SF-6D compared utility-based HRQOL of survivors to an independent sample from the U.S. Medical Expenditures Panel Survey. Chronic health conditions (CHCs) were graded using modified Common Terminology Criteria for Adverse Events. General linear models examined cross-sectional and temporal associations of HRQOL with CHC burden (total and by organ-system), adjusting for potential risk factors.Survivors reported poorer HRQOL compared to the general population (effect size [d] = -0.343). In cross-sectional analyses at baseline, significant non-demographic risk factors included higher total CHC burden (driven by more severe cardiovascular [d = -0.119, p = 0.002], endocrine [d = -0.112, p = 0.001], gastrointestinal [d = -0.226, p < 0.001], immunologic [d = -0.168, p = 0.035], neurologic [d = -0.388, p < 0.001], pulmonary [d = -0.132, p = 0.003] CHCs), public (d = -0.503, p < 0.001) or no health insurance (d = -0.123, p = 0.007), current smoking (d = -0.270, p < 0.001), being physically inactive (d = -0.129, p < 0.001), ever using illicit drugs (d = -0.235, p < 0.001), and worse diet quality (d = -0.004, p = 0.016). In temporal analyses, poorer utility-based HRQOL at follow-up was associated with risk factors at baseline, including higher total CHC burden (driven by cardiovascular [d = -0.152, p = 0.002], endocrine [d = -0.092, p = 0.047], musculoskeletal [d = -0.160, p = 0.016], neurologic [d = -0.318, p < 0.001] CHCs), public (d = -0.415, p < 0.001) or no health insurance (d = -0.161, p = 0.007), current smoking (d = -0.218, p = 0.001), and ever using illicit drugs (d = -0.217, p < 0.001).Adult survivors report worse utility-based HRQOL than the general population, and potentially modifiable risk factors were associated with HRQOL. Interventions to prevent the early onset of CHCs, promote healthy lifestyle, and ensure access to health insurance in the early survivorship stage may provide opportunities to improve HRQOL.The research reported in this manuscript was supported by the U.S. National Cancer Institute under award numbers U01CA195547 (Hudson/Ness), R01CA238368 (Huang/Baker), R01CA258193 (Huang/Yasui), R01CA270157 (Bhakta/Yasui), and T32CA225590 (Krull). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding agencies.

    View details for DOI 10.1016/j.eclinm.2023.101921

    View details for Web of Science ID 000993503400001

    View details for PubMedID 37090443

    View details for PubMedCentralID PMC10114517

  • Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning JCO ONCOLOGY PRACTICE Snaman, J. M., Mazzola, E., Helton, G., Feifer, D., Morris, S. E., Clark, L., Baker, J. N., Wolfe, J. 2023; 19 (4): 207-+

    Abstract

    The early grief experience of parents of children who died of cancer remains understudied. Understanding psychosocial symptomology and functioning of parents early in their bereavement is essential to developing supportive interventions aimed at offsetting poor mental and physical outcomes.Parents of children from two centers who died of cancer 6 to 24 months before were mailed a survey that included validated tools and additional Likert scale-based questions. We used correlation and univariate and multiple regression analyses to assess the associations between psychosocial and grief outcomes and parental social functioning.One hundred twenty-five parents representing 88 children completed the survey. Most respondents identified as female (63%), White (84%), and non-Hispanic (91%). The mean time since child's death was 14.7 (range, 8-26) months. Bereaved parents' mean score for social functioning was only slightly below normative values, and most parents indicated post-traumatic growth and adaptive coping. Parents had high symptom levels for depression, anxiety, post-traumatic stress, and prolonged grief, with those identifying as female having significantly higher symptom scores. Using multivariate analysis, parental scores for resilience and continuing bonds were associated with higher social functioning scores and parental scores for depressive symptoms and prolonged grief were associated with lower social functioning scores.Although bereaved parents exhibit resilience and positive coping, they also show high levels of psychosocial distress in the first 2 years after their child's death, which may reflect the typical parental bereavement experience. Screening for low parental social functioning may identify parents who would benefit from additional support early in bereavement.

    View details for DOI 10.1200/OP.22.00538

    View details for Web of Science ID 000989797600022

    View details for PubMedID 36724414

  • Regional blocks for pain control at the end of life in pediatric oncology FRONTIERS IN PAIN RESEARCH Cuviello, A., de la Sota, A., Baker, J., Anghelescu, D. 2023; 4: 1127800

    Abstract

    Pain management at the end of life is a fundamental aspect of care and can improve patients' quality of life. Interventional approaches may be underutilized for pediatric cancer patients.To describe a single institution's 10 years of experience with regional pain management at the end of life in pediatric oncology.A retrospective cohort study of 27 patients with pediatric cancer who died between April 2011 and December 2021 and received continuous nerve block (CNB) catheters or single-shot nerve blocks (SSBs) during their last three months of life. The type of blocks, analgesic efficacy, and palliative care involvement were evaluated.Twenty-two patients (81.5%) had solid tumor diagnoses, including carcinomas, sarcomas, and neuroblastoma. Most (59%) patients received CNB catheters, and 12 patients (44%) received SSBs for pain control. The mean pain score decreases for CNB catheters and SSBs after interventions were -2.5 and -2.8, respectively, on an 11-point scale. Decreases in opioid patient-controlled analgesia dosing requirements were noted in 56% of patients with CNB catheters; likewise, in 25% of patients with SSBs at 24 h and in 8% at 5 days after interventions. Nearly all patients had PC involvement and received care from pain specialists (96% and 93%, respectively). Twenty-three (85%) had physician orders for scope of treatment orders completed before death.Regional pain control interventions can be effective and safe for relieving regional pain and suffering in dying children and young adults. The collaboration between palliative care and pain management specialists at the end of life can help alleviate suffering and improve quality of life.

    View details for DOI 10.3389/fpain.2023.1127800

    View details for Web of Science ID 001058620500001

    View details for PubMedID 37025167

    View details for PubMedCentralID PMC10070999

  • Profiles of Symptom Suffering and Functioning in Children and Adolescents Receiving Chemotherapy CANCER NURSING Cheng, L., Reeve, B. B., Withycombe, J. S., Jacobs, S. S., Mack, J. W., Weaver, M., Mann, C. M., Waldron, M. K., Maurer, S. H., Baker, J. N., Wang, J., Hinds, P. S. 2023; 46 (2): E129-E137

    Abstract

    Some children and adolescents receiving chemotherapy experience few symptom-related adverse events, whereas others experience multiple adverse events. If oncology nurses could identify patients likely to have pronounced chemotherapy-related adverse events, tailored supportive care could be matched to these patients' symptom burdens.The aim of this study was to identify symptom profiles in children and adolescents before and after chemotherapy, and the sociodemographic and psychological factors associated with profile classification and change.Participants ranging from 7 to 18 years (n = 436) completed 6 Patient-Reported Outcomes Measurement Information System pediatric symptom measures within 72 hours preceding (T1) and 1 to 2 weeks after (T2) chemotherapy. Profile membership and change were determined by latent profile/latent transition analyses. Associations with profiles and profile transitions were examined using multinomial logit models and logistic regression.Three symptom suffering profiles were identified at T1 and T2: high, medium, and low. The high symptom suffering profile included the fewest participants (T1, n = 70; T2, n = 55); the low symptom suffering profile included the most participants (T1, n = 200; T2, n = 207). Of the participants, 57% remained in the same profile from T1 to T2. Psychological stress was significantly associated with T1 and T2 profile classifications and profile transition; age was associated with profile classification at T1.Three symptom suffering profiles existed in a sample of pediatric patients undergoing chemotherapy, indicating that children and adolescents have differing cancer treatment experiences.Oncology nurses could screen pediatric oncology patients for their symptom suffering profile membership and subsequently prioritize care efforts for those with a high suffering profile.

    View details for DOI 10.1097/NCC.0000000000001122

    View details for Web of Science ID 000933411300013

    View details for PubMedID 35816032

    View details for PubMedCentralID PMC9941076

  • Interdisciplinary care of pediatric oncology patients: A survey of clinicians in Central America and the Caribbean PEDIATRIC BLOOD & CANCER Graetz, D. E., Chen, Y., Devidas, M., Antillon-Klussmann, F., Fu, L., Quintero, K., Fuentes-Alabi, S. L., Gassant, P. Y., Kaye, E. C., Baker, J. N., Galindo, C., Mack, J. W. 2023; 70 (5): e30244

    Abstract

    Quality cancer care depends on interdisciplinary communication. This study explored the communication practices of interdisciplinary clinicians, the types of healthcare services for which they engage in interdisciplinary collaboration, and the association between interdisciplinary care and perceived quality of care, as well as job satisfaction.We conducted a survey of interdisciplinary clinicians from cancer centers in Guatemala, Honduras, Panama, El Salvador, and Haiti. The survey included 68 items including previously validated tools and novel questions.Total 174 interdisciplinary clinicians completed the survey: nurses (n = 60), medical subspecialists (n = 35), oncologists (n = 22), psychosocial providers (n = 20), surgeons (n = 12), pathologists (n = 9), radiologists (n = 9), and radiation oncologists (n = 5). Oncologists reported daily communication with nurses (95%) and other oncologists (91%). While 90% of nurses reported daily communication with other nurses, only 66% reported daily communication with oncologists, and more than 50% of nurses reported never talking to pathologists, radiologists, radiation oncologists, or surgeons. Most clinicians described interdisciplinary establishment of cancer treatment goals and prognosis (84%), patient preferences (81%), and determination of first treatment modality (80%). Clinicians who described more interdisciplinary collaboration had higher job satisfaction (p = .04) and perceived a higher level of overall quality of care (p = .004).Clinicians in these limited resource settings describe strong interdisciplinary collaboration contributing to higher job satisfaction and perceived quality of care. However, nurses in these settings reported more limited interdisciplinary communication and care. Additional studies are necessary to further define clinical roles on interdisciplinary care teams and their associations with patient outcomes.

    View details for DOI 10.1002/pbc.30244

    View details for Web of Science ID 000931812800001

    View details for PubMedID 36788461

  • Ten Considerations for Integrating Patient-Reported Outcomes into Clinical Care for Childhood Cancer Survivors CANCERS Horan, M. R., Sim, J., Krull, K. R., Ness, K. K., Yasui, Y., Robison, L. L., Hudson, M. M., Baker, J. N., Huang, I. 2023; 15 (4)

    Abstract

    Patient-reported outcome measures (PROMs) are subjective assessments of health status or health-related quality of life. In childhood cancer survivors, PROMs can be used to evaluate the adverse effects of cancer treatment and guide cancer survivorship care. However, there are barriers to integrating PROMs into clinical practice, such as constraints in clinical validity, meaningful interpretation, and technology-enabled administration of the measures. This article discusses these barriers and proposes 10 important considerations for appropriate PROM integration into clinical care for choosing the right measure (considering the purpose of using a PROM, health profile vs. health preference approaches, measurement properties), ensuring survivors complete the PROMs (data collection method, data collection frequency, survivor capacity, self- vs. proxy reports), interpreting the results (scoring methods, clinical meaning and interpretability), and selecting a strategy for clinical response (integration into the clinical workflow). An example framework for integrating novel patient-reported outcome (PRO) data collection into the clinical workflow for childhood cancer survivorship care is also discussed. As we continuously improve the clinical validity of PROMs and address implementation barriers, routine PRO assessment and monitoring in pediatric cancer survivorship offer opportunities to facilitate clinical decision making and improve the quality of survivorship care.

    View details for DOI 10.3390/cancers15041024

    View details for Web of Science ID 000938441300001

    View details for PubMedID 36831370

    View details for PubMedCentralID PMC9954048

  • Medical experts and trusted confidants: parent perceptions of the clinician-parent relationship in childhood cancer SUPPORTIVE CARE IN CANCER Robertson Eden, G., Josie, C., Carlos, T., Baker Justin, N., Lisa, C., Spraker-Perlman Holly, L., Kaye Erica, C. 2023; 31 (2): 113

    Abstract

    A childhood cancer diagnosis threatens the health, safety, and security of the child and whole family unit. A strong relationship between the healthcare team and family is integral to provision of holistic support during this time of crisis. Family-centered care necessitates a fluid, therapeutic relationship between parents and the child's healthcare team. This study investigated bereaved parents' perspectives on their relationship with their child's care team and the impact of these relationships on their coping across the cancer trajectory and into bereavement.Thirty-one parents whose child died from cancer between 1 and 6 years prior to study enrollment participated in semi-structured interviews about their relationships and interactions with their child's healthcare team across the illness course and into bereavement. We audio-recorded interviews, transcribed them verbatim, and utilized a codebook thematic analysis approach to analyze interview transcripts.Four themes emerged across interviews with parents describing their perceptions of the parent-clinician relationship: (1) a collaborative approach improves perceptions of care, (2) professional trust is core to the relationship, (3) parental personal preference and bias can limit relationship-building, and (4) meaningful connections form on an emotional, individualized level. These themes highlight relational patterns between parents and clinicians that can promote or erode alliance and collaboration.Bereaved parents recognize key attributes that influence the parent-clinician relationship. Educating clinicians about parent-identified positive modifiable behaviors (e.g., communication deficits) and awareness of non-modifiable care factors (e.g., individual personality preferences) may enable clinicians to strengthen relationships with parents and ultimately improve quality of care.

    View details for DOI 10.1007/s00520-023-07575-z

    View details for Web of Science ID 000913517000002

    View details for PubMedID 36633686

    View details for PubMedCentralID 8568787

  • Associations of Symptom Clusters and Health Outcomes in Adult Survivors of Childhood Cancer: A Report From the St Jude Lifetime Cohort Study JOURNAL OF CLINICAL ONCOLOGY Shin, H., Dudley, W. N., Bhakta, N., Horan, M. R., Wang, Z., Bartlett, T., Srivastava, D., Yasui, Y., Baker, J. N., Robison, L. L., Ness, K. K., Krull, K. R., Hudson, M. M., Huang, I. 2023; 41 (3): 497-+

    Abstract

    To identify symptom clusters among adult survivors of childhood cancers and test associations with health-related quality of life (HRQOL) and physical and neurocognitive performance.This cross-sectional study included 3,085 survivors (mean age at evaluation 31.9 ± 8.3 years; mean years from diagnosis 28.1 ± 9.1) participating in the St Jude Lifetime Cohort Study. Survivors self-reported the presence of 37 symptoms capturing 10 domains (cardiac, pulmonary, sensory, motor/movement, nausea, pain, fatigue, memory, anxiety, and depression). The Short Form-36's Physical/Mental Component Summaries assessed HRQOL; the Physical Performance Test evaluated physical performance; and neurocognitive batteries tested attention, processing/psychomotor speed, memory, and executive function. Latent class analysis identified subgroups of survivors experiencing different patterns of symptom burden (ie, symptom clusters). Multivariable regression models identified risk of cluster membership and tested associations with health outcomes.Four symptom clusters were identified including cluster 1 (prevalence 52.4%; low physical, somatization, and psychologic domains), cluster 2 (16.1%; low physical, moderate somatic, and high psychologic domains), cluster 3 (17.6%; high physical, moderate somatic, and low psychologic domains), and cluster 4 (13.9%; high in all three domains). Compared with cluster 1, survivors in cluster 4 were more likely to have less than high school education (odds ratio [OR], 7.71; 95% CI, 4.46 to 13.31), no insurance (OR, 1.49; 95% CI, 1.04 to 2.13), and exposure to corticosteroids (OR, 1.76; 95% CI, 1.02 to 3.03); survivors in cluster 3 were more likely to have received platinum agents (OR, 2.22; 95% CI, 1.34 to 3.68) and brain radiation ≥ 30 Gy (OR, 3.99; 95% CI, 2.33 to 6.86). Survivors in cluster 4 reported the poorest Physical Component Summary/Mental Component Summary scores (31.0/26.7) and physical and neurocognitive performance versus survivors in the other clusters (P < .001).Nearly 50% of survivors had moderate to high multisymptom burden, which was associated with sociodemographic, treatment factors, HRQOL, and functional outcomes.

    View details for DOI 10.1200/JCO.22.00361

    View details for Web of Science ID 000928326300012

    View details for PubMedID 36166720

    View details for PubMedCentralID PMC9870227

  • Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer CHILDREN-BASEL Srinivas, M., Kaye, E. C., Blazin, L. J., Baker, J. N., Mack, J. W., DuBois, J. M., Sisk, B. A. 2023; 10 (1)

    Abstract

    Effective communication is integral to patient and family-centered care in pediatric and adolescent and young adult (AYA) oncology and improving healthcare delivery and outcomes. There is limited knowledge about whether AYAs and parents have similar communication preferences and needs. By eliciting and comparing communication advice from AYAs and parents, we can identify salient guidance for how clinicians can better communicate. We performed secondary analysis of semi-structured interviews from 2 qualitative communication studies. In one study, 80 parents of children with cancer during treatment, survivorship, or bereavement were interviewed. In the second study, AYAs with cancer during treatment or survivorship were interviewed. We asked AYAs and parents to provide communication advice for oncology clinicians. Using thematic analysis, we identified categories of advice related to three overarching themes: interpersonal relationships, informational preferences, and delivery of treatment, resources, and medical care. AYAs and parents provided similar advice about the need for compassion, strong connections, hopefulness, commitment, and transparent honesty However, AYAs placed additional emphasis on clinicians maintaining a calm demeanor.

    View details for DOI 10.3390/children10010007

    View details for Web of Science ID 000914505900001

    View details for PubMedID 36670560

    View details for PubMedCentralID PMC9856802

  • Health literacy on quality of life for children with cancer: modules on pediatric palliative care REVISTA PANAMERICANA DE SALUD PUBLICA-PAN AMERICAN JOURNAL OF PUBLIC HEALTH Garcia-Quintero, X., Blanco, D., Vasquez, L., Fuentes-Alabi, S., Benites-Majano, S., Maza, M., Ugaz, C., Morales, R., Baker, J. N., Mcneil, M. J. 2023; 47: e134

    Abstract

    To describe the development of educational materials for parents and other caregivers of children with cancer, which utilized a culturally sensitive approach to reduce acceptance barriers to palliative care (PC).The Pan American Health Organization (PAHO), St. Jude Children's Research Hospital, and partners in Latin America and the Caribbean collaborated in a three-phase project, beginning with a needs assessment survey of caregivers of children with cancer in Peru. Based on this finding, an interdisciplinary team of pediatric PC experts developed educational content that was designed and validated by an international committee of PC and communication experts.The collaboration resulted in the development of an eight-module series that introduces caregivers to key concepts of pediatric PC, including management of pain, quality of life, and end of life care. The series was designed to reduce caregiver stigma associated with PC through culturally sensitive education that addresses the low levels of health literacy among caregivers in Latin America and the Caribbean. In the 15 months since the launch, these modules have been distributed throughout Latin America and were downloaded 2 825 times.Educational materials and anticipatory guidance of PC were considered to be a priority for parents and other caregivers of children with cancer throughout Latin America. The materials developed through this project have been widely utilized and are available through the PAHO website and the Together by St. Jude™ online resource.

    View details for DOI 10.26633/RPSP.2023.134

    View details for Web of Science ID 001076144600001

    View details for PubMedID 37750058

    View details for PubMedCentralID PMC10516324

  • Collaboration for success: the Global Initiative for Childhood Cancer in Latin America REVISTA PANAMERICANA DE SALUD PUBLICA-PAN AMERICAN JOURNAL OF PUBLIC HEALTH Vasquez, L., Fuentes-Alabi, S., Benitez-Majano, S., Ribeiro, K., Abraham, M., Agulnik, A., Baker, J. N., Blanco, D., Caniza, M. A., Cardenas-Aguirre, A., Salaverria, C., Sullivan, C. E., Damasco-Avila, E., Quintero, X., Loggetto, P., Mcneil, M. J., Luna-Fineman, S., Rossell, N., Lima, R., de Mendonca, R., Trigoso, V., Segovia, L., Vasquez, R., Moreno, F., Friedrich, P., Luciani, S., Lam, C., Metzger, M. L., Rodriguez-Galindo, C., Maza, M. 2023; 47: e144

    Abstract

    The Global Initiative for Childhood Cancer (GICC) aims to increase the cure rate for children with cancer globally by improving healthcare access and quality. The Pan American Health Organization (PAHO), St. Jude Children's Research Hospital (St. Jude), and collaborators have joined efforts to improve outcomes of children with cancer in Latin America and the Caribbean (LAC) using the CureAll framework. In this article, we describe the process of developing regional resources aimed at accelerating the GICC implementation in LAC. In March 2021, PAHO formed regional working groups to develop core projects aligned with CureAll pillars and enablers. Seven working groups emerged from regional dialogues: early detection, nursing, psychosocial, nutrition, supportive care, treatment abandonment, and palliative care. PAHO arranged regular online meetings under the mentorship and support of St. Jude regional/transversal programs and international mentors. Between April and December 2021, 202 multidisciplinary experts attended 43 online meetings to promote the dialogue between stakeholders to improve childhood cancer outcomes. Fourteen technical outputs were produced: four regional snapshots, four technical documents, two virtual courses, one set of epidemiological country profiles, one educational content series for parents/caregivers, and two communication campaigns. The ongoing dialogue and commitment of PAHO, St. Jude, LAC working committees, and international collaborators are essential foundations to successfully accelerate GICC implementation. This is achievable through the development of materials of regional and global relevance. Further research and evaluation are needed to determine the impact of these strategies and resources on childhood cancer outcomes in LAC and other regions.

    View details for DOI 10.26633/RPSP.2023.144

    View details for Web of Science ID 001081872300001

    View details for PubMedID 37799823

    View details for PubMedCentralID PMC10548891

  • Decreasing Burnout and Improving Work Environment: The Impact ofFirgunon a Pediatric Hematopoietic Cell Transplant Team. JCO oncology practice Stein, J., Madni, A., Moody, K., Kramer, D., Vaughn, D., Bhatia, S., Sellers, J., Snyder, A., Lu, Z., Baker, J. N., Levine, D. R. 2023; 19 (3): e365-e376

    Abstract

    PURPOSE: Oncology teams are challenged by BO, which may be alleviated by meaningful recognition. In this study, firgun-altruistic acknowledgment-was implemented on a pediatric hematopoietic cell transplant unit to evaluate its impact on staff and work environment.METHODS: In this longitudinal, mixed-methods pilot study, interdisciplinary inpatient hematopoietic cell transplant providers received web-based firgun education. Electronic administration of validated surveys occurred at baseline and 8 weeks, including Perceived Stress Scale, Professional Quality of Life Scale, Maslach Burnout Inventory, Workplace Civility Index, Areas of Work Life Survey, and WHO-5. Weekly e-mails reminded participants to practice and log firgun. Wilcoxon signed test for paired data compared pre/post results. Interviews conducted at project completion were coded using MaxQDA software.RESULTS: Forty-two participants enrolled; 25 completed pre/post surveys; eight were interviewed. At study end, participants reported feeling less nervous and stressed (P = .008), and less difficulty coping (P = .01; Perceived Stress Scale), while noting increased acknowledgment of others' work (P = .04) and seeking constructive feedback (P = .04; Workplace Civility Index). Marked BO was not evident overall on the Maslach Burnout Inventory; however, emotional exhaustion subscale mean (SD) scores improved from pre (19.4 [8.6]) to post (16 [6.3; P = .02]) and individual items illustrated decreased fatigue (P = .008), frustration (P = .04), and feeling "at the end of my rope" (P = .001). Postintervention participants noted increased receipt of recognition (P = .02; Areas of Work Life Survey), decreased feeling "bogged down" (P = .02), decreased affective stress (P = .04), and negative pre-occupations (P = .04; Professional Quality of Life Scale). Qualitative analysis revealed themes of improved confidence at work and enhanced feelings of trust and teamwork.CONCLUSION: Firgun is a tool that can potentially reduce BO and stress in interdisciplinary providers, facilitate teamwork, and promote positive work environments in clinical oncology and beyond.

    View details for DOI 10.1200/OP.22.00299

    View details for PubMedID 36538744

  • Palliative Sedation Therapy Practice Comparison - A Survey of Pediatric Palliative Care and Pain Management Specialists AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE Cuviello, A., Ang, N., Morgan, K., Baker, J. N., Anghelescu, D. L. 2022: 977-986

    Abstract

    Context: Palliative sedation therapy (PST) can relieve suffering at end-of-life (EOL) in children with intolerable and refractory symptoms. However, updated and consistent guidance on PST practices are imperative. Objectives: We investigate current variations in clinical practice and PST implementation among pediatric palliative care (PPC) and pain management (PM) specialists. Methods: We distributed an IRB-exempt electronic anonymous survey via email through the Society of Pediatric Pain Medicine, and the American Academy of Hospice and Palliative Medicine. Survey responses were collated and descriptively reported. Results: Of 83 survey responses, the majority (75%) represented large academic children's hospitals. The distribution between PPC and pediatric pain management specialists' responses was 60% and 40%, respectively. Most respondents reported having designated pain management and/or palliative care teams (70% and 90%, respectively). Approximately half (48%) reported following an institutional PST protocol, most not requiring formal ethics consult (69%). Only 54% of respondents noted that the Do Not Resuscitate (DNR) order was required prior to PST initiation. PST was primarily utilized for children with oncologic diagnoses (76%). The primary and secondary medications of choice for PST implementation were reported to be opioids (39%) and benzodiazepines (36%) by pain management specialists, and benzodiazepines (52%) and barbiturates (28%) by palliative care specialists. Conclusions: Our study highlights the variability in the practice and implementation of PST. Further educational efforts are key for establishing PST practices and efficient protocol development.

    View details for DOI 10.1177/10499091221138298

    View details for Web of Science ID 000894190800001

    View details for PubMedID 36475873

  • Palliative Sedation Therapy in Pediatrics: An Algorithm and Clinical Practice Update CHILDREN-BASEL Cuviello, A., Johnson, L., Morgan, K. J., Anghelescu, D. L., Baker, J. N. 2022; 9 (12)

    Abstract

    Palliative sedation therapy (PST) is an important clinical intervention for pediatric patients with refractory symptoms and suffering during the end-of-life (EOL) period. Variations in PST implementation including medication selection, limited literature regarding feasibility in various clinical settings, particularly non-intensive care units, and lack of education on evolving definitions and ideal practices may all contribute to the current underutilization of this valuable resource. We therefore offer a clinical algorithm for identifying appropriate patients for PST, ensuring all other modalities for symptom management have been considered and/or optimized, and present a guideline for PST implementation that can be adapted and individualized based on institutional experience and resource availability. Furthermore, through case-based clinical scenarios, we demonstrate how to incorporate this algorithm into EOL practice.

    View details for DOI 10.3390/children9121887

    View details for Web of Science ID 000902384800001

    View details for PubMedID 36553328

    View details for PubMedCentralID PMC9776759

  • Oncologist approaches to communicating uncertain disease status in pediatric cancer: a qualitative study BMC CANCER Porter, A. S., Woods, C., Stall, M., Velrajan, S., Baker, J. N., Mack, J. W., Kaye, E. C. 2022; 22 (1): 1109

    Abstract

    Most patients with cancer and their caregivers desire honest, clear prognostic communication, yet oncologists often disclose prognosis inconsistently. Prognostic communication becomes even more challenging when disease progression is unclear or equivocal. Presently, oncologist approaches for discussing uncertain disease findings are poorly understood.In this prospective, longitudinal study, we audio-recorded serial disease reevaluation conversations between children with high-risk cancer, their families, and their primary oncologists over 24 months and conducted content analysis at recorded timepoints when oncologists categorized disease progression as equivocal.Of the 265 medical discussions recorded across the illness course for 33 patient-parent dyads, a total of 40 recorded discussions took place at equivocal timepoints, comprising > 500 min of medical dialogue. Prognosis talk encompassed < 3% of dialogue and was absent in nearly half of equivocal discussions (17/40, 42.5%). Curability statements were identified in only two conversations. Inductive content analysis of dialogue revealed four distinct patterns for communicating equivocal disease status: (1) up-front reassurance, (2) softening the message, (3) describing possible disease progression without interpretation, (4) expressing uncertainty without discussing the bigger picture.Oncologists rarely discuss prognosis with children with high-risk cancer and their families at timepoints when disease progression is not definitive. Formal guidance is needed to better support oncologists in navigating uncertainty while sharing honest, person- and family-centered information about prognosis.

    View details for DOI 10.1186/s12885-022-10190-6

    View details for Web of Science ID 000876986600003

    View details for PubMedID 36316675

    View details for PubMedCentralID PMC9620648

  • Capturing the young child's reports of cancer treatment tolerability: Does our practice reflect an assumption that they cannot report? COMMENT PEDIATRIC BLOOD & CANCER Reeve, B. B., Hernandez, A., Freyer, D. R., Linder, L. A., Embry, L., Leahy, A., Baker, J. N., Mack, J. W., McFatrich, M., Henke, D. M., Mowbray, C., Jacobs, S. S., Maurer, S. H., Gold, S. H., Hinds, P. S. 2023; 70 (1): e30028

    View details for DOI 10.1002/pbc.30028

    View details for Web of Science ID 000868752700001

    View details for PubMedID 36250991

  • Compassionate de-escalation of life-sustaining treatments in pediatric oncology: An opportunity for palliative care and intensive care collaboration FRONTIERS IN ONCOLOGY Cuviello, A., Pasli, M., Hurley, C., Bhatia, S., Anghelescu, D. L., Baker, J. N. 2022; 12: 1017272

    Abstract

    Approximately 40%-60% of deaths in the pediatric intensive care unit (PICU) are in the context of de-escalation of life-sustaining treatments (LSTs), including compassionate extubation, withdrawal of vasopressors, or other LSTs. Suffering at the end of life (EOL) is often undertreated and underrecognized. Pain and poor quality of life are common concerns amongst parents and providers at a child's EOL. Integration of palliative care (PC) may decrease suffering and improve symptom management in many clinical situations; however, few studies have described medical management and symptom burden in children with cancer in the pediatric intensive care unit (PICU) undergoing de-escalation of LSTs.A retrospective chart review was completed for deceased pediatric oncology patients who experienced compassionate extubation and/or withdrawal of vasopressor support at EOL in the PICU. Demographics, EOL characteristics, and medication use for symptom management were abstracted. Descriptive analyses were applied.Charts of 43 patients treated over a 10-year period were reviewed. Most patients (69.8%) were white males who had undergone hematopoietic stem cell transplantation and experienced compassionate extubation (67.4%) and/or withdrawal of vasopressor support (44.2%). The majority (88.3%) had a physician order for scope of treatment (POST - DNaR) in place an average of 13.9 days before death. PC was consulted for all but one patient; however, in 18.6% of cases, consultations occurred on the day of death. During EOL, many patients received medications to treat or prevent respiratory distress, pain, and agitation/anxiety. Sedative medications were utilized, specifically propofol (14%), dexmedetomidine (12%), or both (44%), often with opioids and benzodiazepines.Pediatric oncology patients undergoing de-escalation of LSTs experience symptoms of pain, anxiety, and respiratory distress during EOL. Dexmedetomidine and propofol may help prevent and/or relieve suffering during compassionate de-escalation of LSTs. Further efforts to optimize institutional policies, education, and collaborations between pediatric intensivists and PC teams are needed.

    View details for DOI 10.3389/fonc.2022.1017272

    View details for Web of Science ID 000876369800001

    View details for PubMedID 36313632

    View details for PubMedCentralID PMC9606590

  • A Review of Patient-Reported Outcome Measures in Childhood Cancer CHILDREN-BASEL Horan, M. R., Sim, J., Krull, K. R., Baker, J. N., Huang, I. 2022; 9 (10)

    Abstract

    Patient-reported outcomes (PROs) are used in clinical work and research to capture the subjective experiences of childhood cancer patients and survivors. PROs encompass content domains relevant and important to this population, including health-related quality-of-life (HRQOL), symptoms, and functional status. To inform future efforts in the application of PRO measures, this review describes the existing generic and cancer-specific PRO measures for pediatric cancer populations and summarizes their characteristics, available language translations, content coverage, and measurement properties into tables for clinicians and researchers to reference before choosing a PRO measure that suits their purpose. We have identified often unreported measurement properties that could provide evidence about the clinical utility of the PRO measures. Routine PRO assessment in pediatric cancer care offers opportunities to facilitate clinical decision-making and improve quality of care for these patients. However, we suggest that before implementing PRO measures into research or clinical care, the psychometric properties and content coverage of the PRO measures must be considered to ensure that PRO measures are appropriately assessing the intended construct in childhood cancer patients.

    View details for DOI 10.3390/children9101497

    View details for Web of Science ID 000872431200001

    View details for PubMedID 36291433

    View details for PubMedCentralID PMC9601091

  • Longitudinal use of patient reported outcomes in pediatric leukemia and lymphoma reveals clinically relevant symptomatic adverse events PEDIATRIC BLOOD & CANCER Jacobs, S. S., Withycombe, J. S., Castellino, S. M., Lin, L., Mack, J. W., McFatrich, M., Baker, J. N., Freyer, D. R., Maurer, S. H., Mowbray, C., Hinds, P. S., Reeve, B. B. 2022; 69 (12): e29986

    Abstract

    Leukemia and lymphoma (LL) are the most common cancer diagnoses of childhood with high survival rates, but not without impact on the child's functioning and quality of life. This study aimed to use patient-reported data to describe the symptomatic adverse event (AE) experiences among children with LL diagnoses.Two hundred and fifty seven children and adolescents aged 7-18 years with a first LL diagnosis completed the Pediatric Patient-Reported version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) and Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric measures before starting a treatment course (T1) and after the treatment (T2).Fatigue was the most severe AE (68.1% at T1; 67% at T2) and caused the most interference over time. Gastrointestinal AEs were also quite common (e.g., nausea 46.3% at T1 and 48.9% at T2; abdominal pain 42.4% at T1; 46.5% at T2). In general, symptoms were present both at T1 and T2 and did not change significantly in severity or interference. The prevalence of AEs varied by LL disease group (e.g., nausea was most common in acute lymphoblastic leukemia (ALL), fatigue was most severe in ALL and Hodgkin Lymphoma (HL), acute myeloid leukemia had the fewest AEs).Despite current supportive care regimens, many children with LL continue to report fatigue, pain, insomnia, and gastrointestinal symptoms as the most frequent or severe symptoms during therapy.

    View details for DOI 10.1002/pbc.29986

    View details for Web of Science ID 000858266200001

    View details for PubMedID 36151978

  • Pediatric Early Warning Systems (PEWS) improve provider-family communication from the provider perspective in pediatric cancer patients experiencing clinical deterioration CANCER MEDICINE Gillipelli, S. R., Kaye, E. C., Garza, M., Ferrara, G., Rodriguez, M., Vasquez, D., Aceituno, A., Antillon-Klussmann, F., Gattuso, J. S., Mandrell, B. N., Baker, J. N., Rodriguez-Galindo, C., Agulnik, A., Graetz, D. E. 2023; 12 (3): 3634-3643

    Abstract

    Communication between providers and patients' families is an integral part of clinical care. Family concern is a validated component of Pediatric Early Warning Systems (PEWS); however, little is known about the impact of PEWS on provider-family communication.Semi-structured interviews were conducted with 83 ward and Pediatric Intensive Care Unit (PICU) providers involved in the care of patients with deterioration at two pediatric oncology hospitals of different resource levels: St. Jude Children's Research Hospital (n = 42) in the United States and Unidad Nacional de Oncología Pediátrica (UNOP, n = 41) in Guatemala. Interviews were conducted in the participants' native language (English or Spanish), transcribed, and translated into English. Transcripts were coded by two researchers and analyzed for thematic content surrounding family communication and concern.All participants recognized patients' families as a valuable part of the care team, particularly during events requiring escalation of care. Perceived barriers to communication included limited time spent at the bedside, and, at UNOP, language and literacy challenges which occasionally limited providers' ability to assess family concern and involve families in patient care. Despite these barriers, providers perceived PEWS improved communication by facilitating more interaction with families, allowing for relationship-building, anticipatory guidance, and destigmatization of the PICU. PEWS assessments also allowed families to contribute to identification of deterioration.PEWS improve the quality of communication between providers and families by providing more opportunities for interaction, building relationships, and trust. These findings further support the use of PEWS in the care of children with cancer in hospitals of all resource-levels.

    View details for DOI 10.1002/cam4.5210

    View details for Web of Science ID 000855713500001

    View details for PubMedID 36128882

    View details for PubMedCentralID PMC9939098

  • "Seed Planting" As an Approach for Longitudinal Prognostic Disclosure in Pediatric Cancer: A Case Series JOURNAL OF PALLIATIVE MEDICINE Aglio, T., Woods, C., Baker, J. N., Mack, J. W., Kaye, E. C. 2023; 26 (3): 447-451

    Abstract

    Most children with cancer and their parents desire honest communication about prognosis, even when prognosis is poor. Unfortunately, many parents perceive deficits in communication about prognosis, and strategies are needed to encourage timely person-centered prognostic discussions. To better understand patterns in prognostic communication, we audio-recorded serial disease re-evaluation conversations between pediatric oncologists, children with poor-prognosis cancer diagnoses, and their families across the illness trajectory. Prior analysis revealed broad prognostic communication patterns, including a "seed planting" approach where prognostic information was offered gradually across time. In this case series, we examine the seed planting approach more closely, identifying language strategies that clinicians used to help patients and families gain insight into prognostic gravity as their illness evolved. Although further research is needed to measure the full impact of a seed planting approach, this case series explores a longitudinal communication strategy with potential to improve prognostic communication across an advancing illness course.

    View details for DOI 10.1089/jpm.2022.0219

    View details for Web of Science ID 000891617600001

    View details for PubMedID 36094817

  • Regional adaptation of the education in palliative and end-of-life Care Pediatrics (EPEC-Pediatrics) curriculum in Eurasia CANCER MEDICINE McNeil, M. J., Ehrlich, B., Yakimkova, T., Wang, H., Mishkova, V., Bezler, Z., Kumirova, E., Madni, A., Movsisyan, N., Williams, K., Baizakova, B., Borisevich, M., Chatman, G., Erimbetova, I., Quintero, X., Golban, R., Kirby, B., Nunez, P., Ranadive, R., Sakhar, N., Sonnenfelt, J., Volkova, A., Moreira, D., Friedrichsdorf, S. J., Wolfe, J., Remke, S., Hauser, J., Devidas, M., Baker, J. N., Agulnik, A. 2023; 12 (3): 3657-3669

    Abstract

    Pediatric palliative care (PPC) is a priority to improve pediatric hematology oncology (PHO) care in Eurasia. However, there are limited regional opportunities for PPC education. We describe the adaptation and implementation of a bilingual end-user Education in Palliative and End-of-Life Care (EPEC)-Pediatrics course for PHO clinicians in Eurasia.Due to COVID-19, this course was delivered virtually, consisting of prerecorded, asynchronous lectures, and a bilingual workshop with interactive lectures and small group sessions. A pre-postcourse design was used to evaluate the knowledge acquisition of the participants including their knowledge alignment with World Health Organization (WHO) guidance, ideal timing of palliative care, and comfort in providing palliative care to their patients. Questions were mostly quantitative with multiple choice or Likert scale options, supplemented by free-text responses.A total of 44 (76%) participants from 14 countries completed all components of the course including pre- and postcourse assessments. Participant alignment with WHO guidance improved from 75% in the pre- to 90% in the postcourse assessments (p < 0.001). After participation, 93% felt more confident controlling the suffering of children at the end of life, 91% felt more confident in prescribing opioids and managing pain, and 98% better understood how to hold difficult conversations with patients and families. Most participants (98%) stated that they will change their clinical practice based on the skills and knowledge gained in this course.We present a successful regional adaptation of the EPEC-Pediatrics curriculum, including novel delivery of course content via a virtual bilingual format. This course resulted in significant improvement in participant attitudes and knowledge of PPC along with an understanding of the ideal timing of palliative care consultation and comfort in providing PPC to children with cancer. We plan to incorporate participant feedback to improve the course and repeat it annually to improve access to high-quality palliative care education for PHO clinicians in Eurasia.

    View details for DOI 10.1002/cam4.5213

    View details for Web of Science ID 000850816500001

    View details for PubMedID 36073348

    View details for PubMedCentralID PMC9939085

  • Navigating prognostic communication when children with poor-prognosis cancer experience prolonged disease stability PEDIATRIC BLOOD & CANCER Porter, A. S., Chow, E., Woods, C., Lemmon, M. E., Baker, J. N., Mack, J. W., Kaye, E. C. 2023; 70 (1): e29920

    Abstract

    Most pediatric patients and families want clear prognostic information across the illness course. Yet when children with poor-prognosis cancer experience prolonged disease stability, uncertainty can make communication particularly challenging. In this study, we aimed to (i) assess how frequently oncologists communicate about prognosis when high-risk cancer does not progress, and (ii) describe prognostic communication patterns in the context of disease stability.In this prospective, longitudinal, mixed-methods study, we audio-recorded serial disease re-evaluation conversations between children with poor-prognosis cancer, their families, and their primary oncologists. For this secondary analysis, we conducted content analysis across serial conversations among 16 patient-parent-oncologist triads for whom the patient's disease remained stable over the 24-month study period.Prognostic communication was absent in >50% of recorded conversations. Overall, it comprised only 4% of dialog time, nearly 90% of which was dialog about prognostic uncertainty; discussion of curability occurred infrequently. Three distinct patterns for prognostic communication emerged: (a) "Don't know" statements, avoiding or deferring prognostication; (b) "Worry" statements, preparing families for possible future disease progression; and (c) relief-caveat statements, celebrating disease stability while balancing positivity with caution.Oncologists seldom talked about prognosis with high-risk patients during periods of disease stability; yet when they did, they used thoughtful and effective strategies to prepare families for possible future disease progression. Further research is needed to better understand if, how, and when patients and families with stable disease who are high risk for future disease progression prefer to receive information about prognosis.

    View details for DOI 10.1002/pbc.29920

    View details for Web of Science ID 000843630500001

    View details for PubMedID 36000929

  • Mismatch between Pediatric Oncologists' Private and Parent-Facing Prognostic Communication: Communication Patterns Used to Soften Prognostic Disclosure JOURNAL OF PALLIATIVE MEDICINE Porter, A. S., Woods, C., Stall, M., Baker, J. N., Mack, J. W., Kaye, E. C. 2023; 26 (2): 210-219

    Abstract

    Purpose: Most parents of children with cancer desire honest prognostic communication, yet oncologists often avoid clear prognostic disclosure. This study explored differences between oncologists' private assessments of prognosis and their prognostic communication with patients and parents. Patients and Methods: In this prospective, longitudinal, mixed-methods study, we audio-recorded serial disease reevaluation conversations between children with advancing cancer, parents, and primary oncologists and separately surveyed and interviewed oncologists at disease progression time points. At time points when oncologists privately described curability as ≤10%, content analysis was used to compare prognostic language in recorded dialogue with private responses about prognosis. Results: Of 33 enrolled patient-parent dyads, 17 patients with high-risk cancer under the care of 6 primary oncologists experienced disease progression during the study period. In 95% of oncologist interviews at disease progression time points, oncologists either predicted curability to be ≤10% or incurable. In most interviews (82%), oncologists stated unequivocally that chances of cure were ≤10%, yet did not communicate these low odds during recorded discussions at the same time point. Analysis revealed three distinct communication patterns through which oncologists softened prognostic disclosure to patients and families: (1) space-holding for hope of cure: statements acknowledging difficult prognosis yet leaving room for possibility of cure; (2) vague warning: statements implying that cancer may progress without offering specifics; and (3) data without interpretation: statements describing disease progression findings in detail without explaining what this meant for the patient's future life or survival. Conclusion: Pediatric oncologists often temper their assessment of poor prognosis when speaking with patients and families. Future work should explore serious conversation guides and other clinical interventions aimed at encouraging person-centered prognostic disclosure for patients with advancing cancer and their families.

    View details for DOI 10.1089/jpm.2022.0265

    View details for Web of Science ID 000841448500001

    View details for PubMedID 35976087

  • Dexmedetomidine and Propofol at End of Life in Pediatric Oncology: Trends in Palliative Sedation Therapy JOURNAL OF PALLIATIVE MEDICINE Cuviello, A., Pasli, M., Bhatia, S., Johnson, L., Anghelescu, D. L., Baker, J. N. 2023; 26 (1): 79-86

    Abstract

    Context: Palliative sedation therapy (PST) can address suffering at the end of life (EOL) in children with cancer; yet, little is known about PST in this population. Objectives: We sought to describe the characteristics of pediatric oncology patients requiring PST at the EOL. Methods: A retrospective review was completed for pediatric oncology patients who required PST at a United States academic institution over 10 years, including demographics, disease characteristics, EOL characteristics, and medications for PST and symptom management. Results: PST was utilized in 3% of patients at the EOL. Of 24 study participants receiving PST, 83% (n = 20), 12.5% (n = 3), and 4.2% (n = 1) received dexmedetomidine, propofol, or both, respectively. The most frequent diagnosis for patients receiving PST was acute myelogenous leukemia (20.8%, n = 5). All patients were followed up by the palliative care team, and two-thirds (66.6%, n = 16) were also followed up by the pain management service; 79% (n = 19) were enrolled in hospice, and 98.5% (n = 23) had a Physician Orders for Scope of Treatment in place. Pain was the most common refractory symptom leading to PST initiation (33.3%, n = 8), followed by neuroagitation and dyspnea. PST was initiated a median of 2.5 days before death. A third of deaths occurred in the intensive care unit (33.3%, n = 8). Conclusions: PST was rare in this study; dexmedetomidine was used as first-line treatment for PST in patients at the EOL with refractory symptoms. Its place in PST protocols in pediatric oncology should be validated with prospective studies. Our study suggests the potential value of collaboration between palliative care and pain specialists in the context of PST.

    View details for DOI 10.1089/jpm.2021.0650

    View details for Web of Science ID 000838334300001

    View details for PubMedID 35944277

    View details for PubMedCentralID PMC9810498

  • Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences A Randomized Clinical Trial JAMA NETWORK OPEN Needle, J., Friebert, S., Thompkins, J. D., Grossoehme, D. H., Baker, J. N., Jiang, J., Wang, J., Lyon, M. E. 2022; 5 (7): e2220696

    Abstract

    The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined.To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences.This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022.Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information.Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis.A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (β [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69).Results of this trial showed that, for those who received the FACE-TC intervention, the families' knowledge of their adolescents' end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity-based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study.ClinicalTrials.gov Identifier: NCT02693665.

    View details for DOI 10.1001/jamanetworkopen.2022.20696

    View details for Web of Science ID 000825557700001

    View details for PubMedID 35819787

    View details for PubMedCentralID PMC9277499

  • Silence in Conversations About Advancing Pediatric Cancer FRONTIERS IN ONCOLOGY Rockwell, S. L., Woods, C. L., Lemmon, M. E., Baker, J. N., Mack, J. W., Andes, K. L., Kaye, E. C. 2022; 12: 894586

    Abstract

    Skillful use of silence by clinicians can support patient-centered communication. However, what makes a period of silence feel meaningful is not well understood. This study aimed to characterize profound, skillful silences during difficult conversations between pediatric oncologists, children with advancing cancer, and their families.We audio-recorded serial disease reevaluation discussions between pediatric oncologists, patients with high-risk cancer, and their families across 24 months or until death, whichever occurred first. Using an inductive process, we performed content analysis across all dialogue recorded at timepoints of disease progression to examine types of silence.17 patient-parent dyads with disease progression yielded 141 recorded conversations. Inductive coding yielded a layered typology of silence, including "intentional silence" (≥5 seconds), "profound silence" (≥5 seconds following receipt of difficult information, juxtaposed with statements of shared understanding, emotion, or enlightenment), and "stacked silence" (series of silences juxtaposed within dialogue). Intentional silence lasting ≥5 seconds occurred 238 times in 35/49 "bad news" recordings; nearly half (103/238) of these silences were identified as profound silence, in which silences appeared to create space for processing, allowed for questions to emerge, and synergized with empathic and affirmational statements. In most cases, profound silences involved the juxtaposition, or stacking, of multiple silences close together.Profound silences occur often during conversations about advancing pediatric cancer and share distinct characteristics. Opportunities exist to teach clinicians to use profound and stacked silences with intention during difficult conversations as a fundamental aspect of communication.

    View details for DOI 10.3389/fonc.2022.894586

    View details for Web of Science ID 000826770400001

    View details for PubMedID 35847957

    View details for PubMedCentralID PMC9277146

  • Co-management of communication and care in adolescent and young adult oncology PEDIATRIC BLOOD & CANCER Sisk, B. A., Keenan, M., Kaye, E. C., Baker, J. N., Mack, J. W., DuBois, J. M. 2022; 69 (10): e29813

    Abstract

    Clinicians have an ethical and practical imperative to engage adolescents and young adults (AYAs) with cancer in communication and care. Many young AYAs have involved parents, but guidelines for co-management of care with AYAs and their parents are lacking.We performed 37 semistructured interviews with AYAs aged 12-24 years at diagnosis, recruiting them from two pediatric cancer centers. We performed thematic analysis, aiming to understand how AYAs and their parents navigate their roles in communication and care.We identified six roles that AYAs co-managed with their parents: (1) managing information, (2) managing social and emotional needs, (3) managing health, (4) advocating and empowering, (5) making decisions, and (6) managing logistics. AYAs tended to take more active roles in managing information and more passive roles in managing logistics, managing health, and making decisions. AYAs described how they and their parents had mutual responsibilities to be strong and to protect other's emotions. Additionally, we identified five factors that influenced AYAs' roles in communication and care: (1) AYA agency, (2) clinician encouragement, (3) emotional and physical well-being, (4) personality, preferences, and values, and (5) insights and skills.AYAs have nuanced preferences for how they are involved in communication and care roles. Clinicians can help families to clarify their preferences and values around these roles in a way that meets each family's unique needs. Future studies should aim to develop tools that support the fulfillment of these engagement goals.

    View details for DOI 10.1002/pbc.29813

    View details for Web of Science ID 000812851200001

    View details for PubMedID 35719025

    View details for PubMedCentralID PMC9681027

  • Using EmPalPed-An Educational Toolkit on Essential Messages in Palliative Care and Pain Management in Children-As a Strategy to Promote Pediatric Palliative Care CHILDREN-BASEL Garcia-Quintero, X., Claros-Hulbert, A., Elena Tello-Cajiao, M., Edwar Bolanos-Lopez, J., Isabel Cuervo-Suarez, M., Garcia Duran, M., Gomez-Garcia, W., McNeil, M., Baker, J. N. 2022; 9 (6)

    Abstract

    Background: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational curricula of healthcare programs. Therefore, specific training that improves knowledge of HCPs and access to PC for children and their families is needed. To address this gap, we organized and conducted the Essential Messages in Palliative Care and Pain Management in Children (EmPalPed), an educational toolkit to increase awareness and promote essential knowledge in PPC for low- and middle-income countries. Methodology: The EmPalPed toolkit consisted of a 5-h virtual workshop with small working groups of HCPs caring for children with life-threatening conditions such as cancer. The toolkit was organized along five key domains: (1) PC as it relates to the concept of quality of life (QoL), (2) effective communication, (3) addressing pain management as a top priority, (4) providing end-of-life care, and (5) access to high-quality PC as a fundamental human right. The workshop activities included different educational strategies and tools (e.g., a pocket guide for pain assessment and management, a PPC booklet, a quick guide for communicating bad news, role playing, and discussions of clinical cases). Results: A total of 145 HCPs from 22 centers were trained. The post-test analysis for HCPs showed that attitude and knowledge about communication (p < 0.001), pain assessment (p < 0.001), first-line opioid of choice in children (p < 0.001), and palliative sedation (p < 0.001) had positive and statistically significant changes from the pre-test analysis. Discussion: This study supported the notion that the EmPalPed educational toolkit is an effective mechanism for raising awareness regarding PPC as well as providing training in many of the key aspects of PPC. The EmPalPed training approach should be studied beyond this setting, and the impact should be measured longitudinally.

    View details for DOI 10.3390/children9060838

    View details for Web of Science ID 000816316000001

    View details for PubMedID 35740775

    View details for PubMedCentralID PMC9221893

  • The Art of Saying Nothing PEDIATRICS Kaye, E. C., Rockwell, S. L., Lemmon, M. E., Baker, J. N., Mack, J. W. 2022; 149 (6)

    View details for DOI 10.1542/peds.2022-056862

    View details for Web of Science ID 000918229400043

    View details for PubMedID 35641466

    View details for PubMedCentralID PMC9619411

  • Quality improvement knowledge in pediatric hematology/oncology physicians: A need for improved education PEDIATRIC BLOOD & CANCER Terao, M., Stokes, C. L., Sitthi-Amorn, J., Vinitsky, A., Burlison, J. D., Baker, J. N., Li, C., Lu, Z., McDonald, M., Hoffman, J. M. 2022; 69 (8): e29794

    Abstract

    Pediatric hematology/oncology fellows face unique quality improvement challenges given the danger of chemotherapy and caring for immunocompromised patients. Curricula to teach pediatric hematology/oncology fellows about quality improvement are lacking. We conducted a needs assessment of pediatric hematology/oncology physicians as a first step for creating a quality improvement curriculum for pediatric hematology/oncology fellows. Curricular topics were identified: root cause analysis, run charts, process mapping, chemotherapy/medication safety, implementation/adherence to guidelines. Identified barriers to curriculum implementation included a possible lack of quality improvement expertise, lack of awareness of quality improvement resources, and limited time.

    View details for DOI 10.1002/pbc.29794

    View details for Web of Science ID 000800064300001

    View details for PubMedID 35614566

  • Lack of Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials JOURNAL OF CLINICAL ONCOLOGY Freyer, D. R., Lin, L., Mack, J. W., Maurer, S. H., McFatrich, M., Baker, J. N., Jacobs, S. S., Lucas, N., Withycombe, J. S., Tomlinson, D., Villabroza, K., Waldron, M. K., Hinds, P. S., Reeve, B. B. 2022; 40 (15): 1623-+

    Abstract

    To examine concordance in symptomatic adverse event (AE) grading using the Common Terminology Criteria for Adverse Events (CTCAE 4.0) for clinicians and its patient-reported outcome (PRO) versions for children (Ped-PRO-CTCAE) and caregivers (Ped-PRO-CTCAE [Caregiver]).Children age 7-18 years with a first cancer diagnosis, their clinicians, and caregivers completed CTCAE-based measures before starting a treatment course (T1) and after the treatment (T2). Grades (0-3) were assigned by each reporter for 15 core AEs spanning physical and mental health. Mean grades were compared between reporters using two-sample t-tests; agreement was estimated using weighted kappa (κ) statistics. Multivariable mixed regression models were used to evaluate associations of clinical factors with AE reporting concordance. Significance was set at α = .05 (two-sided).There were 438 child-clinician-caregiver triads with complete data at either T1 or T2. For children, the mean age was 13 years (standard deviation = 3.4), 53.7% were male, 32.6% non-White, and 56.4% had leukemia/lymphoma. At T1, clinician mean AE grades were significantly lower (ie, better) than children for all AEs and remained significantly lower at T2 except for constipation, nausea, anorexia, neuropathy, and anxiety. Caregiver mean AE grades were similar to children at T1 and significantly higher (ie, worse) at T2 for nausea, vomiting, anorexia, pain, fatigue, anxiety, and depression. Agreement for child-clinician grading was poor-to-fair at T1 (κ range, 0.08-0.34) and T2 (0.11-0.35), and for child-caregiver, was fair-to-good at T1 (0.34-0.65) and T2 (0.24-0.60). No factors were consistently associated with reporter concordance across AEs.Compared with children, symptomatic AEs were consistently under-reported by clinicians with low agreement and over-reported by caregivers with low-moderate agreement. Direct reporting by children using Ped-PRO-CTCAE or similar measures should be routinely incorporated for toxicity assessment in clinical trials.

    View details for DOI 10.1200/JCO.21.02669

    View details for Web of Science ID 000809890800006

    View details for PubMedID 35294262

    View details for PubMedCentralID PMC9113216

  • Bereaved Parent Perspectives and Recommendations on Best Practices for Legacy Interventions JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Love, A., Greer, K., Woods, C., Clark, L., Baker, J. N., Kaye, E. C. 2022; 63 (6): 1022-+

    Abstract

    Many pediatric hospitals offer legacy interventions for families to promote coping and support grief prior to and following the death of a child. Despite this practice, parent perceptions of the value of legacy activities are not well described, and best practices for offering and creating legacy interventions remain poorly understood.To characterize bereaved parents' perspectives on the value of legacy activities; to describe parent recommendations for optimizing provision of legacy activities by child life specialists and music therapists.In this qualitative study, a purposive sample of 19 bereaved parents of children who died from cancer participated in semi-structured interviews. Interviews were audio-recorded, transcribed, and analyzed inductively using content analysis to identify key concepts and emerging themes.Analysis of transcripts revealed bereaved parent insights and recommendations across three core themes: 1) the value of legacy items and interventions; 2) the practical roles, uses, and functions of legacy items, and 3) best practices for offering legacy interventions. Bereaved parents sought meaning and purpose in abstract and concrete manifestations of legacy. Parents often used legacy items in specific ways to promote emotional expression and process their grief. Communication, timing, and creativity significantly influenced parent perceptions of legacy-building. Parents recommended individualized assessments to optimize provision of legacy interventions.Bereaved parents emphasized the meaningfulness of legacy-building activities and the need for an individualized approach when offering these interventions. Future research should explore the perspectives and recommendations of patients and siblings on legacy activities.

    View details for DOI 10.1016/j.jpainsymman.2022.02.003

    View details for Web of Science ID 000802790300044

    View details for PubMedID 35157983

  • An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial PEDIATRICS Baker, J. N., Friebert, S., Needle, J., Jiang, J., Wang, J., Lyon, M. E. 2022; 149 (5)

    Abstract

    There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences.Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence.Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01).High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences.

    View details for DOI 10.1542/peds.2021-054796

    View details for Web of Science ID 000918218200023

    View details for PubMedID 35425986

    View details for PubMedCentralID PMC9648108

  • "You are not alone": Connecting through a bereaved parent mentor program for parents whose child died of cancer CANCER MEDICINE McNeil, M. J., Kiefer, A., Woods, C., Barnett, B., Berry-Carter, K., Clark, L., Mandrell, B. N., Snaman, J., Kaye, E. C., Baker, J. N. 2022; 11 (17): 3332-3341

    Abstract

    Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well-being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster this peer support, an institutional peer-to-peer mentorship program for bereaved parents was established, through which trained bereaved parent mentors offer support for newly bereaved parents.Using a retrospective cohort design, we describe the characteristics of participants of the Bereaved Parent Mentorship program. Trained bereaved parent mentors documented encounters with newly bereaved parent mentees using a secure internet-based form. Mentors summarized each encounter including any concerns or need for professional psychosocial support. Descriptive statistics were used to describe mentor and mentee characteristics; free text from encounter summaries was qualitatively analyzed using content analysis.A total of 1368 documented encounters occurred between 150 mentees and 39 mentors from January 1, 2014 to February 29, 2020. Only seven encounters (0.5%) were flagged as serious concern necessitating professional psychosocial support. Four key themes in the encounters between mentors and mentees emerged, including: descriptions of the grief experience, ways in which a mentor supported their mentee, challenges the mentor experienced in supporting the mentee, and personal benefit gained by the mentor from supporting their mentee.This structured Bereaved Parent Mentorship program fostered rich interactions between bereaved parent participants, with very few encounters requiring professional assistance. Future research will assess the impact of bereaved mentor programs on resilience and psychosocial, physical, and functional well-being of parents.

    View details for DOI 10.1002/cam4.4696

    View details for Web of Science ID 000776582900001

    View details for PubMedID 35362669

    View details for PubMedCentralID PMC9468435

  • Profile Comparison of Patient-Reported and Proxy-Reported Symptoms in Pediatric Patients With Cancer Receiving Chemotherapy JAMA NETWORK OPEN Weaver, M. S., Jacobs, S. S., Withycombe, J. S., Wang, J., Greenzang, K. A., Baker, J. N., Hinds, P. S. 2022; 5 (3): e221855

    Abstract

    The variability in individual symptom and adverse event reporting between pediatric patient-reports and proxy-reports is widely reported. However, the question of whether symptom profiles based on reports from children with cancer and their caregivers are similar or disparate have not yet been studied.To compare proxy symptom reports with patient self-reports to assess alignment.A multicenter cohort study was conducted from October 2016 to December 2018 from data collected at 9 pediatric cancer centers. Participants were a convenience sample of family caregivers or proxies of children aged 7 to 18 years who had received disease-directed oncology treatment in the form of chemotherapy for at least 1 month. Data were analyzed identifying clusters of individuals (ie, latent profiles) based on various responses (ie, indicators) in August 2021.The children of proxy participants received upfront chemotherapy. Children and proxies completed Patient-Reported Outcomes Measurement Information System (PROMIS) surveys at 2 time points: within 72 hours preceding treatment initiation and following the course of chemotherapy.The latent profile analysis methods were applied to caregiver-proxy reports of PROMIS Pediatric symptom and function measures (anxiety, depressive symptoms, pain interference, fatigue, psychological stress, and physical function-mobility). The instrument categorized respondents as high symptom suffering, medium symptom suffering, and low symptom suffering (hereafter, high, medium, and low symptom groups, respectively).Of 580 approached proxies, 431 (368 [85.00%] were female) identified as legal guardians of children aged 7 to 18 years with a first cancer diagnosis (mean [SD] age, 13.03 [3.40] years; 235 [54.65%] were male). Proxy reports of children's experiences based on the 5 proxy PROMIS measures comprised 3 distinct symptom profiles. The most common proxy assessments of children's experiences were the moderate symptom groups (45.7% [197 of 431]) and the low symptom groups profiles (40.1% [173 of 431]). A high symptom groups profile emerged which represented 14.2% (61 of 431) of proxy assessments. The number of profiles and observed distribution of profile membership was similar between child and proxy reports. Proxy reports of individual symptoms generally recorded higher scores than child reports; however, no significant difference was observed between proxies and child profile model results for the PROMIS measures.Results of this cohort study suggest that, at the level of symptom severity profile, proxy caregiver reports may approximate the children's reports and may serve as a guide to care when the child is not able to self-report.

    View details for DOI 10.1001/jamanetworkopen.2022.1855

    View details for Web of Science ID 000776712300001

    View details for PubMedID 35348712

    View details for PubMedCentralID PMC8965635

  • Physician Perceptions of Palliative Care for Children With Cancer in Latin America JAMA NETWORK OPEN McNeil, M. J., Ehrlich, B. S., Wang, H., Vedaraju, Y., Bustamante, M., Dussel, V., Friedrich, P., Quintero, X., Gillipelli, S. R., Garcia, W., Graetz, D. E., Kaye, E. C., Metzger, M. L., Danon, C., Devidas, M., Baker, J. N., Agulnik, A., Assessing Doctors Attitudes Pallia 2022; 5 (3): e221245

    Abstract

    The World Health Organization (WHO) designates early integration of palliative care as an ethical responsibility in the treatment of children with serious illness. Although structural barriers may influence provision of pediatric palliative care (PPC) for children with cancer in resource-limited settings, underlying physician perceptions may also impede early integration of PPC in cancer care.To investigate perceptions among physicians in Latin America about the integration of palliative care for children with cancer.This survey study used the Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey, which was developed for physicians who care for children with cancer and was initially distributed in Eurasia. The survey was modified for use in Latin America, including translation into Spanish and adaptation for cultural context. The survey was distributed between August 21, 2020, and January 31, 2021, to physicians treating children with cancer in 17 Latin American countries. Each country had a specific survey distribution method based on guidance of local experts.The ADAPT survey evaluated physicians' understanding of palliative care principles, comfort in addressing patient and family suffering, and identification of barriers to PPC integration for children with cancer. Univariate and multivariable linear regression analyses were used to assess factors associated with physicians' knowledge about and comfort with PPC practice and whether independent physician variables were associated with survey response alignment with WHO guidance on PPC. Open-ended questions were analyzed qualitatively to supplement the quantitative data.A total of 874 physicians from 17 countries participated, with an overall response rate of 39.9% (874 of 2193) and a median country response rate of 51.4% (range, 23.7%-100%). Most respondents were aged 35 years or older (577 [66.0%]), and 594 (68.0%) identified as female. Most physicians (486 [55.6%]) had no formal PPC training, and 303 (34.7%) had no access to PPC experts for consultation. Physician perspectives on PPC were generally aligned with WHO guidance (mean [SD] alignment, 83.0% [14.1%]; range among respondents, 24.0%-100%). However, only 438 respondents (50.1%) felt comfortable addressing physical symptoms of patients receiving PPC, 295 (33.8%) felt comfortable addressing emotional symptoms, and 216 (24.7%) felt comfortable addressing grief and bereavement needs of the patient's family. A total of 829 participants (94.8%) desired further education and training in PPC.Although physicians' perspectives aligned well with WHO guidance for PPC, this survey study identified opportunities for improving physician training in symptom management and emotional support for children with cancer and their families. These findings may inform the development of targeted interventions to improve the quality of PPC for children with cancer in Latin America.

    View details for DOI 10.1001/jamanetworkopen.2022.1245

    View details for Web of Science ID 000767486500004

    View details for PubMedID 35258577

    View details for PubMedCentralID PMC8905380

  • Multidisciplinary Clinician Perspectives on Embedded Palliative Care Models in Pediatric Cancer JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Salek, M., Woods, C., Gattas, M., Gattuso, J. S., Mandrell, B., Baker, J. N., Kaye, E. C. 2022; 64 (3): 222-233

    Abstract

    Integration of palliative care (PC) into pediatric cancer care is considered best practice by national oncology and pediatric organizations. Optimal strategies for PC integration remain understudied, although growing evidence suggests that embedded models improve quality of care and quality of life for patients and families.To describe the perspectives and preferences of multidisciplinary clinicians regarding ideal models for PC integration in pediatric cancer care; to introduce clinicians to the theoretical concept of an embedded care model; to empower clinicians in co-design of a new institutional model through collaborative discussion of anticipated benefits and challenges of embedded model implementation.Trained facilitators conducted 24 focus groups, stratified by discipline and care team. Focus groups were audio-recorded and transcribed for inductive content analysis using MAXQDA software.174 clinicians participated (25 physicians, 30 advanced practice providers [APPs], 70 nurses, 49 psychosocial clinicians). Clinicians across disciplines verbalized that an embedded PC model would improve access to PC; however, identified benefits and challenges varied by discipline. Benefits included earlier integration of PC (physicians, APPs), normalization of PC as an integral aspect of care by patients/families (nurses, psychosocial), collaboration (physicians, psychosocial clinicians), and communication (APPs, psychosocial). Anticipated challenges included inadequate resources and physician resistance (physicians, APPs, nurses) and multidisciplinary role confusion (APPs, nurses, psychosocial).Pediatric clinicians recognize the potential value of an embedded PC model. Although some concepts overlapped, multidisciplinary clinicians offered unique beliefs, highlighting the importance of including representative perspectives to ensure that pediatric PC models align with priorities of diverse stakeholders.

    View details for DOI 10.1016/j.jpainsymman.2022.05.019

    View details for Web of Science ID 000863975800012

    View details for PubMedID 35649459

  • Education in Palliative and End-of-Life Care-Pediatrics: Curriculum Use and Dissemination JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Postier, A. C., Wolfe, J., Hauser, J., Remke, S. S., Baker, J. N., Kolste, A., Dussel, V., Bernada, M., Widger, K., Rapoport, A., Drake, R., Chong, P., Friedrichsdorf, S. J. 2022; 63 (3): 349-358

    Abstract

    The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide.Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction.From 2011 to 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses.About 172 of 786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across six continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions.EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.

    View details for DOI 10.1016/j.jpainsymman.2021.11.017

    View details for Web of Science ID 000759843000008

    View details for PubMedID 34896279

  • Barriers and Opportunities for Patient-Reported Outcome Implementation: A National Pediatrician Survey in the United States CHILDREN-BASEL Chen, M., Jones, C. M., Bauer, H. E., Osakwe, O., Ketheeswaran, P., Baker, J. N., Huang, I. 2022; 9 (2)

    Abstract

    To characterize pediatricians' perceived barriers and areas of confidence in assessing patient-reported outcomes (PROs) in the U.S., and to test associations of these factors with implementing PRO assessment.Using a random sample from the members of American Medical Association, we recruited general pediatricians and pediatric subspecialists to complete a survey (July 2011 to December 2013). Perceived barriers and confidence in PRO assessment were compared by age, pediatric specialty (general pediatrics, seven subspecialties), practice settings (academic, private), and region of practice. Multivariable logistic regressions tested associations of demographic factors, barriers, and confidence factors with the implementation of PRO assessment.The survey was completed by 458 participants (response rate 48.5%); of these, 40.4%, 15.9%, 15.5%, and 8.1% were general pediatricians, cardiology, hematology/oncology, and pulmonary specialists, respectively. PRO assessment was implemented by 29.0% of the pediatricians. The top five barriers for PRO assessment included limited time/manpower (79.0%), limited training (77.4%), lengthy PRO instruments (76%), lack of meaningful cut-offs on PRO scores (75.5%), and unavailable PRO instruments (75.0%). Limited knowledge of PROs (OR 4.10; 95% CI 2.21, 7.60) and unavailability of PRO instruments (OR 1.87; 95% CI 1.01, 3.49) increased the odds of not implementing the assessment, whereas confidence in PRO assessments compatible with norms (OR 0.41; 95% CI 0.23, 0.72) and perceived benefit over clinical judgment alone (OR 0.53; 95% CI 0.31, 0.93) decreased the odds of not implementing the assessment.significant barriers to PRO assessment in pediatric settings suggest the need for providing training, resources, and practical guidance toward implementation. Patient or Public Contribution: healthcare service users contributed to this study by completing a survey and providing feedback about the barriers and areas of confidence in assessing PROs for pediatric populations.

    View details for DOI 10.3390/children9020185

    View details for Web of Science ID 000763362900001

    View details for PubMedID 35204906

    View details for PubMedCentralID PMC8870373

  • Interdependent functions of communication with adolescents and young adults in oncology PEDIATRIC BLOOD & CANCER Sisk, B. A., Keenan, M., Schulz, G. L., Kaye, E., Baker, J. N., Mack, J. W., DuBois, J. M. 2022; 69 (4): e29588

    Abstract

    Communication is central to patient-centered care in adolescent and young adult (AYA) cancer. Previously, we developed a functional communication model from perspectives of parents whose children had cancer. No prior studies have established a framework for the breadth of communication functions in AYA oncology. We aimed to identify these communication functions from AYAs' perspectives.Semistructured interviews with 37 AYAs with cancer aged 12-24 years at diagnosis from two pediatric centers during treatment or survivorship. We performed thematic analysis, using a functional communication model as an a priori framework, but remaining open to novel themes.We identified eight interdependent functions of communication in AYA oncology that were consistent with those previously identified among parents: building relationships, exchanging information, enabling family self-management, making decisions, managing uncertainty, responding to emotions, providing validation, and supporting hope. AYAs held varying preferences for engagement in different communication functions. While some AYAs preferred very passive or active roles, most AYAs described an interdependent process of communication involving them, their parents, and their clinicians. Parents often served as a conduit and buffer of communication between the AYA and clinician.Interviews with AYAs provided evidence for eight interdependent communication functions in AYA oncology. Many AYAs described the integral role of parents in communication regardless of their age. Clinicians can use this framework to better understand and fulfill the communication needs of AYA patients. Future work should aim to measure and intervene upon these functions to improve communication experiences for AYAs with cancer.

    View details for DOI 10.1002/pbc.29588

    View details for Web of Science ID 000748279200001

    View details for PubMedID 35092342

    View details for PubMedCentralID PMC8860882

  • Translating Research to Action: The Development of a Pediatric Palliative Cancer Care Advocacy Tool in Eurasia JCO GLOBAL ONCOLOGY Ehrlich, B. S., Yakimkova, T., Batmunkh, T., Mishkova, V., Movsisyan, N., Kirgizov, K., Borisevich, M., Kizyma, R., Graetz, D. E., McNeil, M. J., Vinitsky, A., Smelov, V., Corbex, M., Lam, C. G., Kaye, E. C., Baker, J. N., Agulnik, A., ADAPT Res Grp 2022; 8: e2100270

    Abstract

    The Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional collaborators identified the need to disseminate country-specific study results locally and provide policy recommendations to inform stakeholders.The Assessing Doctors' Attitudes on Palliative Treatment report was developed with Eurasian and St Jude pediatric palliative care and oncology experts to summarize study findings and deliver country-level data to local stakeholders. In parallel, an assessment was developed to explore how regional collaborators intend to use the report to improve local advocacy and dissemination of research findings. The country report and assessment were translated to English, Russian, and Mongolian.Country-specific two-page reports display study findings on pediatric palliative care education, access to pediatric palliative care services, and barriers to and timing of integration with cancer care, alongside clinical and policy recommendations. These reports were distributed to collaborators in 11 countries. Assessment results (N = 30) demonstrated that regional collaborators planned to distribute the report to institutional and government stakeholders, aiming to increase access to pediatric palliative care services (77%), establish a community-based palliative care network (70%), and increase opportunities for specialization (70%).We describe the development of an evidence-based advocacy tool to inform local health and education policy in Eurasia. This summary report of study findings, translated to local languages and adapted to a broader audience, is currently used to advocate for greater access and quality of palliative care for children with cancer. This work may serve as the basis for future dissemination efforts of scientific research.

    View details for DOI 10.1200/GO.21.00270

    View details for Web of Science ID 000769311700012

    View details for PubMedID 35084997

    View details for PubMedCentralID PMC8806380

  • Recommended scoring approach for the pediatric patient-reported outcomes version of the Common Terminology Criteria for Adverse Events PEDIATRIC BLOOD & CANCER Hinds, P. S., Pinheiro, L. C., McFatrich, M., Waldron, M., Baker, J. N., Mowbray, C., Maurer, S. H., Cheng, Y., Reeve, B. B., Wang, J. 2022; 69 (6): e29452

    Abstract

    Collecting symptom, function, and adverse event (AE) data directly from children and adolescents undergoing cancer care is more comprehensive and accurate than relying solely on their caregivers or clinicians for their interpretations. We developed the pediatric patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) measurement system with input from children, parents, and clinicians. Here, we report how we determined the recommended Ped-PRO-CTCAE item scoring approach.Data from 271 patients were analyzed using three scoring approaches: (a) at the AE attribute (frequency, severity, interference) using ordinal and dichotomous measures; (b) a weighted composite AE item score by AE attribute (0.5 - frequency; 1.0 - severity; 1.5 - interference); and (c) overall number of AEs endorsed. Associations of each AE attribute, AE item score, and overall AE score with the Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric measures were examined. The ability of the overall Ped-PRO-CTCAE AE score to identify patients with PROMIS symptom T-scores worse than reference population scores was assessed. Clinician preference for score information display was elicited through interviews with five pediatric oncology clinical trialists.The diverse scoring approaches yielded similar outcomes, including positive correlations of the Ped-PRO-CTCAE attributes, AE item score, and the overall AEs score with the PROMIS Pediatric measures. Clinicians preferred the most granular display of scoring information (actual score reported by the child and corresponding descriptive term).Although three scoring approaches yielded similar results, we recommend the AE attribute level of one score per Ped-PRO-CTCAE AE attribute for its simplicity of use in care and research.

    View details for DOI 10.1002/pbc.29452

    View details for Web of Science ID 000726581000001

    View details for PubMedID 34866311

    View details for PubMedCentralID PMC9038621

  • Conflicting goals and obligations: Tensions affecting communication in pediatric oncology PATIENT EDUCATION AND COUNSELING Sisk, B. A., Schulz, G., Kaye, E. C., Baker, J. N., Mack, J. W., DuBois, J. M. 2022; 105 (1): 56-61

    Abstract

    To describe the tensions experienced by clinicians and psychosocial professionals that affect communication in pediatric oncology.Ten focus groups with nurses, nurse practitioners, physicians, and psychosocial professionals at 2 US institutions. We analyzed transcripts using thematic analysis, assessing tensions experienced when communicating with parents.We identified 5 themes of tensions, defined as challenges experienced when clinicians and psychosocial professionals are trying to achieve multiple conflicting goals or obligations while communicating: (1) Supporting parental hopes while providing honest opinions and information; (2) disclosing all possible outcomes while avoiding the creation of new worries or uncertainties; (3) building relationships while maintaining personal boundaries; (4) disclosing sensitive information while adhering to professional role and perceived authority; (5) validating parental beliefs or decisions while fulfilling obligation for honesty. Some tensions represented conflicts between different communication goals. Others represented conflicts between a communication goal and another obligation.Clinicians and psychosocial professionals experience tensions that affect communication with parents in pediatric oncology. Some tensions might be addressed with interventions or education. Others will require further analysis to provide sufficient guidance to clinicians.Unaddressed tensions might lead to poor communication and clinician burnout. Future work should explore solutions to these tensions.

    View details for DOI 10.1016/j.pec.2021.05.003

    View details for Web of Science ID 000728910500006

    View details for PubMedID 33992486

    View details for PubMedCentralID PMC8978564

  • "Still Caring for the Family": Condolence Expression Training for Pediatric Residents JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Porter, A. S., Weaver, M. S., Snaman, J. M., Li, C., Lu, Z., Baker, J. N., Kaye, E. C. 2021; 62 (6): 1188-1197

    Abstract

    Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been studied.The objective of this study was to evaluate pediatric residents' levels of experience and comfort with condolence expression and to assess their needs and desires for training in condolence expression.A cross-sectional, mixed-methods survey was developed by palliative care clinicians in collaboration with bereaved parents. In 2020, following pilot testing, an electronic survey measuring resident experience with, comfort with, and training on condolence expression was distributed to 202 third-year pediatric residents across 17 Accreditation Council for Graduate Medical Education-accredited programs representing varying sizes and geographic regions.Ten percent of pediatric residents surveyed reported having training on condolence expression. Almost all residents considered condolence expression to be beneficial for bereaved families and most for clinicians, too, yet very very few had formally expressed condolences in their roles as physicians: 83.1% had never written a condolence letter; 85% had never made a condolence phone call; and 90.5% had never attended a memorial event. Commonly reported barriers to condolence expression included lack of experience and training, as well as concern about upsetting families.Pediatric residents lack comfort with and training in condolence expression and desire education to address these gaps. These findings should inform development and investigation of educational resources and training opportunities for residents to learn and practice compassionate provision of condolences to grieving families.

    View details for DOI 10.1016/j.jpainsymman.2021.05.019

    View details for Web of Science ID 000727301200008

    View details for PubMedID 34062219

  • Natural Language Processing and Machine Learning Methods to Characterize Unstructured Patient-Reported Outcomes: Validation Study JOURNAL OF MEDICAL INTERNET RESEARCH Lu, Z., Sim, J., Wang, J. X., Forrest, C. B., Krull, K. R., Srivastava, D., Hudson, M. M., Robison, L. L., Baker, J. N., Huang, I. 2021; 23 (11): e26777

    Abstract

    Assessing patient-reported outcomes (PROs) through interviews or conversations during clinical encounters provides insightful information about survivorship.This study aims to test the validity of natural language processing (NLP) and machine learning (ML) algorithms in identifying different attributes of pain interference and fatigue symptoms experienced by child and adolescent survivors of cancer versus the judgment by PRO content experts as the gold standard to validate NLP/ML algorithms.This cross-sectional study focused on child and adolescent survivors of cancer, aged 8 to 17 years, and caregivers, from whom 391 meaning units in the pain interference domain and 423 in the fatigue domain were generated for analyses. Data were collected from the After Completion of Therapy Clinic at St. Jude Children's Research Hospital. Experienced pain interference and fatigue symptoms were reported through in-depth interviews. After verbatim transcription, analyzable sentences (ie, meaning units) were semantically labeled by 2 content experts for each attribute (physical, cognitive, social, or unclassified). Two NLP/ML methods were used to extract and validate the semantic features: bidirectional encoder representations from transformers (BERT) and Word2vec plus one of the ML methods, the support vector machine or extreme gradient boosting. Receiver operating characteristic and precision-recall curves were used to evaluate the accuracy and validity of the NLP/ML methods.Compared with Word2vec/support vector machine and Word2vec/extreme gradient boosting, BERT demonstrated higher accuracy in both symptom domains, with 0.931 (95% CI 0.905-0.957) and 0.916 (95% CI 0.887-0.941) for problems with cognitive and social attributes on pain interference, respectively, and 0.929 (95% CI 0.903-0.953) and 0.917 (95% CI 0.891-0.943) for problems with cognitive and social attributes on fatigue, respectively. In addition, BERT yielded superior areas under the receiver operating characteristic curve for cognitive attributes on pain interference and fatigue domains (0.923, 95% CI 0.879-0.997; 0.948, 95% CI 0.922-0.979) and superior areas under the precision-recall curve for cognitive attributes on pain interference and fatigue domains (0.818, 95% CI 0.735-0.917; 0.855, 95% CI 0.791-0.930).The BERT method performed better than the other methods. As an alternative to using standard PRO surveys, collecting unstructured PROs via interviews or conversations during clinical encounters and applying NLP/ML methods can facilitate PRO assessment in child and adolescent cancer survivors.

    View details for DOI 10.2196/26777

    View details for Web of Science ID 000726326400003

    View details for PubMedID 34730546

    View details for PubMedCentralID PMC8600437

  • Racial and Ethnic Disparities in Health Outcomes Among Long-Term Survivors of Childhood Cancer: A Scoping Review FRONTIERS IN PUBLIC HEALTH Reeves, T. J., Mathis, T. J., Bauer, H. E., Hudson, M. M., Robison, L. L., Wang, Z., Baker, J. N., Huang, I. 2021; 9: 741334

    Abstract

    The five-year survival rate of childhood cancer has increased substantially over the past 50 yr; however, racial/ethnic disparities in health outcomes of survival have not been systematically reviewed. This scoping review summarized health disparities between racial/ethnic minorities (specifically non-Hispanic Black and Hispanic) and non-Hispanic White childhood cancer survivors, and elucidated factors that may explain disparities in health outcomes. We used the terms "race", "ethnicity", "childhood cancer", "pediatric cancer", and "survivor" to search the title and abstract for the articles published in PubMed and Scopus from inception to February 2021. After removing duplicates, 189 articles were screened, and 23 empirical articles were included in this review study. All study populations were from North America, and the mean distribution of race/ethnicity was 6.9% for non-Hispanic Black and 4.5% for Hispanic. Health outcomes were categorized as healthcare utilization, patient-reported outcomes, chronic health conditions, and survival status. We found robust evidence of racial/ethnic disparities over four domains of health outcomes. However, health disparities were explained by clinical factors (e.g., diagnosis, treatment), demographic (e.g., age, sex), individual-level socioeconomic status (SES; e.g., educational attainment, personal income, health insurance coverage), family-level SES (e.g., family income, parent educational attainment), neighborhood-level SES (e.g., geographic location), and lifestyle health risk (e.g., cardiovascular risk) in some but not all articles. We discuss the importance of collecting comprehensive social determinants of racial/ethnic disparities inclusive of individual-level, family-level, and neighborhood-level SES. We suggest integrating these variables into healthcare systems (e.g., electronic health records), and utilizing information technology and analytics to better understand the disparity gap for racial/ethnic minorities of childhood cancer survivors. Furthermore, we suggest national and local efforts to close the gap through improving health insurance access, education and transportation aid, racial-culture-specific social learning interventions, and diversity informed training.

    View details for DOI 10.3389/fpubh.2021.741334

    View details for Web of Science ID 000717970900001

    View details for PubMedID 34778176

    View details for PubMedCentralID PMC8586515

  • Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness JAMA NETWORK OPEN Porter, A. S., Zalud, K., Applegarth, J., Woods, C., Gattas, M., Rutt, E., Williams, K., Baker, J. N., Kaye, E. C. 2021; 4 (10): e2127457

    Abstract

    Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood.To assess the pediatric-specific training and support needs of hospice nurses caring for children in the community.For this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixed-methods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted.The interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training.Interviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to ≥60 years) and median tenure of 5-9 years (range, <1 to ≥20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatric-specific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community.In this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses caring for children in the community.

    View details for DOI 10.1001/jamanetworkopen.2021.27457

    View details for Web of Science ID 000704860500006

    View details for PubMedID 34605916

    View details for PubMedCentralID PMC8491107

  • Status of Palliative Oncology Care for Children and Young People in Sub-Saharan Africa: A Perspective Paper on Priorities for New Frontiers JCO GLOBAL ONCOLOGY Namisango, E., Bhakta, N., Wolfe, J., McNeil, M. J., Powell, R. A., Kibudde, S., Luyirika, E. K., Mulema, V., Feudtner, C., Baker, J. N. 2021; 7: 1395-1405

    Abstract

    The burden of cancer disproportionately affects low- and middle-income countries. Low 5-year survival figures for children with cancer in low-income countries are due to late presentation at diagnosis, treatment abandonment, absence of sophisticated multidisciplinary care, and lack of adequate resources. The reasons for late presentation are partly due to limited awareness of cancer symptoms, high treatment costs, and facility-level barriers to timely access to treatment. Given the systemic challenges, the regional need for palliative oncology care for children care is high. Despite the enormity of the need for palliative oncology for children with cancer in Africa, its level of development remains poor. This paper presents the evidence on the status of palliative oncology care for children in sub-Saharan Africa.This review provides an overview of the current status of palliative oncology care for children in sub-Saharan Africa, using the WHO building blocks for health systems strengthening as reference points, before proposing a forward-looking prioritized agenda for its development.We noted that survival rates for children with cancer remain much poorer in Africa compared with developed countries and palliative oncology care resources are scant. Our results also show low coverage for palliative oncology care services for children, lack of a critical mass of health workers with the skills to deliver the care, a lack of robust documentation of the burden of cancer, widespread lack of access to essential controlled medicines, limited funding from government and limited coverage for palliative oncology care in most cancer control plans.This review highlights priority areas for action that align to the WHO health system building blocks for strengthening health systems.

    View details for DOI 10.1200/GO.21.00102

    View details for Web of Science ID 000757088900008

    View details for PubMedID 34546790

    View details for PubMedCentralID PMC8457851

  • Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic JOURNAL OF PAIN AND SYMPTOM MANAGEMENT McNeil, M. J., Kaye, E. C., Vedaraju, Y., Baker, J. N., Devidas, M., Downing, J., Graetz, D., Ranadive, R., Rosenberg, A. R., Wiener, L., Weaver, M. S. 2021; 62 (3): E91-E99

    Abstract

    The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care.Gaining understanding of the professional and personal experiences of PPC providers on a global scale during COVID-19 is essential to improve clinical practices in an ongoing pandemic.The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus Survey-Global survey was designed and distributed to assess changes in PPC practices resulting from COVID-19. Quantitative and qualitative data were captured through the survey.One hundred and fifty-six providers were included in the final analysis with 59 countries and six continents represented (31% from lower- or lower middle-income countries). Nearly half of PPC providers (40%) reported programmatic economic insecurity or employment loss. Use of technology influenced communication processes for nearly all participants (91%), yet most PPC providers (72%) reported receiving no formal training in use of technological interfaces. Respondents described distress around challenges in provision of comfort at the end of life and witnessing patients' pain, fear, and isolation.PPC clinicians from around the world experienced challenges related to COVID-19. Technology was perceived as both helpful and a hinderance to high quality communication. The pandemic's financial impact translated into concerns about programmatic sustainability and job insecurity. Opportunities exist to apply these important experiential lessons learned to improve and sustain care for future patients, families, and interdisciplinary teams.This original article describes the impact of the COVID-19 pandemic on pediatric palliative care clinicians from 59 countries including financial losses, use of virtual communication modalities, and the respondents' distress in provision of comfort at the end of life.

    View details for DOI 10.1016/j.jpainsymman.2021.03.016

    View details for Web of Science ID 000691814800013

    View details for PubMedID 33794302

    View details for PubMedCentralID PMC8007190

  • Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey'" JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Feudtner, C., Faerber, J. A., Rosenberg, A. R., Kobler, K., Baker, J. N., Bowman, B. A., Wolfe, J., Friebert, S. 2021; 62 (3): 593-598

    Abstract

    The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified 11 potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance."Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item.One hundred seventy-seven individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top five potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6).Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.

    View details for DOI 10.1016/j.jpainsymman.2021.01.007

    View details for Web of Science ID 000692100500016

    View details for PubMedID 33485936

  • Facilitators Associated With Building and Sustaining Therapeutic Alliance in Advanced Pediatric Cancer JAMA NETWORK OPEN Kaye, E. C., Rockwell, S., Woods, C., Lemmon, M. E., Andes, K., Baker, J. N., Mack, J. W. 2021; 4 (8): e2120925

    Abstract

    Therapeutic alliance is a core component of patient- and family-centered care, particularly in the setting of advancing cancer. Communication approaches used by pediatric oncologists to foster therapeutic alliance with children with cancer and their families are not well understood.To identify key oncologist-driven facilitators associated with building and sustaining therapeutic alliance in the setting of advancing pediatric cancer and to develop a framework to guide clinical practice and future investigation of therapeutic alliance.In this qualitative study, serial disease reevaluation discussions that occurred in the clinic, inpatient hospital, or off campus via telephone were recorded among pediatric oncologists, patients with high-risk cancer, and their families across 24 months or until death, whichever occurred first, from 2016 to 2020. This analysis focused on recorded discussions for pediatric patients who experienced progressive disease during the study period. Content analysis was conducted across recorded dialogue to derive inductive codes and identify themes. Participants were patient-parent dyads for whom a primary oncologist projected the patient's survival to be 50% or less, all family members and friends who attended any of their recorded disease reevaluation conversations, and their oncologists and other clinicians who attended the recorded discussions.A total of 33 patient-parent dyads were enrolled and followed longitudinally. From this cohort, 17 patients experienced disease progression during the study period, most of whom were female (11 [64.7%]) and White (15 [88.2%]) individuals. For these patients, 141 disease reevaluation discussions were audio recorded, comprising 2400 minutes of medical dialogue. Most children (14 [82.4%]) died during the study period. A median of 7 disease reevaluation discussions per patient (range, 1-19) were recorded. Content analysis yielded 28 unique concepts associated with therapeutic alliance fostered by oncologist communication. Ultimately, 7 core themes emerged to support a framework for clinician approaches associated with optimizing therapeutic alliance: human connection, empathy, presence, partnering, inclusivity, humor, and honesty.In this qualitative study, pediatric oncologists used diverse communication approaches associated with building and deepening connections across advancing illness. These findings offer a framework to support clinical and research strategies for strengthening therapeutic alliance among pediatric oncologists, patients, and families.

    View details for DOI 10.1001/jamanetworkopen.2021.20925

    View details for Web of Science ID 000686734400003

    View details for PubMedID 34415315

    View details for PubMedCentralID PMC8379655

  • Broaching goals-of-care conversations in advancing pediatric cancer PEDIATRIC BLOOD & CANCER Kaye, E. C., Woods, C., Velrajan, S., Lemmon, M. E., Baker, J. N., Mack, J. W. 2021; 68 (10): e29270

    Abstract

    Broaching conversations about goals of care can be difficult for clinicians. Presently, the communication strategies used by pediatric oncologists to approach goals of care conversations are not well understood. We recorded disease re-evaluation conversations between pediatric oncologists, patients, and parents, capturing 141 conversations (∼2400 minutes) for 17 patients with advancing illness across the study period. We conducted content analysis to identify strategies for broaching goals-of-care conversations and found five distinct communication approaches, which were not mutually exclusive. Further research is needed to explore patient and family views on best practices for broaching discussions about goals of care.

    View details for DOI 10.1002/pbc.29270

    View details for Web of Science ID 000681760500001

    View details for PubMedID 34357679

    View details for PubMedCentralID PMC8422283

  • Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and families BRITISH JOURNAL OF CANCER Kaye, E. C., Woods, C., Kennedy, K., Velrajan, S., Gattas, M., Bilbeisi, T., Huber, R., Lemmon, M. E., Baker, J. N., Mack, J. W. 2021; 125 (8): 1089-1099

    Abstract

    In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication about palliative care principles and advance care planning remains understudied.We audio-recorded serial disease re-evaluation conversations between oncologists, children with advancing cancer and their families across the illness trajectory until death or 24 months from last disease progression. Content analysis was conducted to determine topic frequencies, timing and communication approaches.One hundred forty one disease re-evaluation discussions were audio-recorded for 17 patient-parent dyads with advancing cancer. From 2400 min of recorded dialogue, 119 min (4.8%) included discussion about palliative care principles or advance care planning. Most of this dialogue occurred after frank disease progression. Content analysis revealed distinct communication approaches for navigating discussions around goals of care, quality of life, comfort and consideration of limiting invasive interventions.Palliative care principles are discussed infrequently across evolving illness for children with progressive cancer. Communication strategies for navigating these conversations can inform development of educational and clinical interventions to encourage earlier dialogue about palliative care principles and advance care planning for children with high-risk cancer and their families.

    View details for DOI 10.1038/s41416-021-01512-9

    View details for Web of Science ID 000680346000002

    View details for PubMedID 34341516

    View details for PubMedCentralID PMC8505663

  • Clinicians' Perspectives on the Functions of Communication in Pediatric Oncology JOURNAL OF PALLIATIVE MEDICINE Sisk, B. A., Schulz, G. L., Kaye, E. C., Baker, J. N., Mack, J. W., DuBois, J. M. 2021; 24 (10): 1545-1549

    Abstract

    Background: Parents previously identified eight core functions of communication with clinicians in pediatric oncology. Objective: To determine clinicians' views on communication functions in pediatric oncology. Design: In 10 focus groups with 59 clinicians at two academic centers, we asked open-ended questions about communication goals and purposes. Then we presented definitions of eight communication functions previously described by parents and explored clinicians' perspectives. Setting/Subjects: We performed separate focus groups for nurses, nurse practitioners, physicians, and psychosocial professionals. Measurements: Thematic analysis of focus group transcripts. Results: Clinicians identified six functions in response to open-ended questions. After reviewing the eight functions described by parents, all clinicians agreed with the framework: building relationships, exchanging information, making decisions, enabling family self-management, managing uncertainty, responding to emotions, supporting hope, and providing validation. Conclusions: Pediatric oncology clinicians corroborated this functional communication framework. Clinicians and researchers can utilize this framework to guide care and research in the future.

    View details for DOI 10.1089/jpm.2021.0090

    View details for Web of Science ID 000672892700001

    View details for PubMedID 34255562

    View details for PubMedCentralID PMC8568787

  • Associations of job demands and patient safety event involvement on burnout among a multidisciplinary group of pediatric hematology/oncology clinicians PEDIATRIC BLOOD & CANCER Dunn, T. J., Terao, M. A., Blazin, L. J., Spraker-Perlman, H., Baker, J. N., Mandrell, B., Sellers, J., Crabtree, V., Hoffman, J. M., Burlison, J. D. 2021; 68 (11): e29214

    Abstract

    Workplace burnout can result in negative consequences for clinicians and patients. We assessed burnout prevalence and sources among pediatric hematology/oncology inpatient nurses, ambulatory nurses, physicians (MDs), and advanced practice providers (APPs) by evaluating effects of job demands and involvement in patient safety events (PSEs).A cross-sectional survey (Maslach Burnout Inventory) measured emotional exhaustion, depersonalization, and reduced personal accomplishment. The National Aeronautics and Space Administration Task Load Index measured mental demand, physical demand, temporal demand, effort, and frustration. Relative weights analyses estimated the unique contributions of tasks and PSEs on burnout. Post hoc analyses evaluated open-response comments for burnout factors.Burnout prevalence was 33%, 20%, 34%, and 33% in inpatient nurses, ambulatory nurses, and MD, and APPs, respectively (N = 481, response rate 69%). Reduced personal accomplishment was significantly higher in inpatient nurses than MDs and APPs. Job frustration was the most significant predictor of burnout across all four cohorts. Other significant predictors of burnout included temporal demand (nursing groups and MDs), effort (inpatient nurses and MDs), and PSE involvement (ambulatory nurses). Open-response comments identified time constraints, lack of administrator support, insufficient institutional support for self-care, and inadequate staffing and/or turnover as sources of frustration.All four clinician groups reported substantial levels of burnout, and job demands predicted burnout. The body of knowledge on job stress and workplace burnout supports targeting organizational-level sources versus individual-level factors as the most effective prevention and reduction strategy. This study elaborates on this evidence by identifying structural drivers of burnout within a multidisciplinary context of pediatric hematology/oncology clinicians.

    View details for DOI 10.1002/pbc.29214

    View details for Web of Science ID 000669854300001

    View details for PubMedID 34227729

  • Never Enough Time: Mixed Methods Study Identifies Drivers of Temporal Demand That Contribute to Burnout Among Physicians Who Care for Pediatric Hematology-Oncology Patients JCO ONCOLOGY PRACTICE Blazin, L. J., Terao, M. A., Spraker-Perlman, H., Baker, J. N., Crabtree, V., Mandrell, B. N., Gattuso, J., Sellers, J., Dunn, T. J., Lu, Z., Hoffman, J. M., Burlison, J. D. 2021; 17 (7): 439-+

    Abstract

    Burnout is a syndrome of emotional exhaustion, depersonalization, and reduced personal accomplishment because of chronic occupational stress. Approximately one third of pediatric hematology-oncology physicians experience burnout. The goal of this mixed methods study was to determine the prevalence and drivers of burnout among physicians caring for pediatric hematology-oncology patients at our institution.This mixed methods, cross-sectional study was conducted at a large academic cancer center. Validated survey instruments were used to measure burnout, job demands, experience with patient safety events, and workplace culture. Quantitative data informed development of a semistructured interview guide, and physicians were randomly selected to participate in individual interviews. Interviews were transcribed and analyzed via content analysis based on a priori codes.The survey was distributed to 132 physicians, and 53 complete responses were received (response rate 40%). Of the 53 respondents, 15 (28%) met criteria for burnout. Experiencing burnout was associated with increased temporal demand. Twenty-six interviews were conducted. Qualitative themes revealed that frequent meetings, insufficient support staff, and workflow interruptions were key drivers of temporal demand and that temporal demand contributed to burnout through emotional exhaustion and reduced personal accomplishment.Nearly one-third of participating physicians met criteria for burnout, and burnout was associated with increased temporal demand. Qualitative interviews identified specific drivers of temporal demand and burnout, which can be targeted for intervention. This methodology can be easily adapted for broad use and may represent an effective strategy for identifying and mitigating institution-specific drivers of burnout.

    View details for DOI 10.1200/OP.20.00754

    View details for Web of Science ID 000708094400022

    View details for PubMedID 33720755

    View details for PubMedCentralID PMC8462670

  • Patients, caregivers, and clinicians differ in performance status ratings: Implications for pediatric cancer clinical trials CANCER Maurer, S. H., Hinds, P. S., Reeve, B. B., Mack, J. W., McFatrich, M., Lin, L., Withycombe, J. S., Jacobs, S. S., Baker, J. N., Castellino, S. M., Freyer, D. R. 2021; 127 (19): 3664-3670

    Abstract

    The Lansky Play-Performance Scale (LPPS) is often used to determine a child's performance status for cancer clinical trial eligibility. Differences between clinician and caregiver LPPS ratings and their associations with child-reported functioning have not been evaluated.Children aged 7 to 18 years who were receiving cancer treatment and their caregivers were recruited from 9 pediatric cancer centers. Caregivers and clinicians reported LPPS scores, and children completed Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric functioning and symptom measures before treatment (time 1 [T1]) and after treatment (time 2 [T2]). t tests and mixed-linear models were used to assess differences in caregiver and clinician LPPS scores; polyserial correlations quantified associations between PROMIS and LPPS scores.Of 482 children, 281 had matched caregiver- and clinician-reported LPPS T1/T2 scores. Caregivers rated children significantly worse on the LPPS than clinicians at both T1 (mean, 73.3 vs 87.4; P < .01) and T2 (mean, 67.9 vs 83.1; P < .01). These differences were not related to a child's age (P = .89), diagnosis (P = .17), or sex (P = .64) or to the time point (P = .45). Small to moderate associations existed between caregiver- and clinician-reported LPPS ratings and child-reported PROMIS scores for mobility (caregiver T1/T2 r = 0.51/0.45; P < .01; clinician T1/T2 r = 0.40/0.35; P < .01), fatigue (caregiver T1/T2 r = -0.46/-0.37; P < .01; clinician T1/T2 r = -0.26/-0.27; P < .01), and pain interference (caregiver T1/T2 r = -0.32/-0.30; P < .01; clinician T1/T2 r = -0.17/-0.31; P < .01). Caregivers and clinicians assigned significantly lower LPPS scores at T2 (caregiver Δ = -5.37; P < .01; clinician Δ = -4.20; P < .01), whereas child-reported PROMIS scores were clinically stable.Significant differences between clinician and caregiver LPPS ratings of child performance were sustained over time; their associations with child reports were predominantly small to moderate. These data suggest that clinician-reported LPPS ratings by themselves are inadequate for determining clinical trial eligibility and should be supplemented by appropriate measures of a child's functional status reflecting the child and caregiver perspectives.

    View details for DOI 10.1002/cncr.33740

    View details for Web of Science ID 000668607700001

    View details for PubMedID 34196962

    View details for PubMedCentralID PMC8419065

  • Impact of PEWS on Perceived Quality of Care During Deterioration in Children With Cancer Hospitalized in Different Resource-Settings FRONTIERS IN ONCOLOGY Garza, M., Graetz, D. E., Kaye, E. C., Ferrara, G., Rodriguez, M., Soberanis Vasquez, D., Mendez Aceituno, A., Antillon-Klussmann, F., Gattuso, J. S., Mandrell, B. N., Baker, J. N., Rodriguez-Galindo, C., Agulnik, A. 2021; 11: 660051

    Abstract

    Children with cancer are at high risk for clinical deterioration and subsequent mortality. Pediatric Early Warning Systems (PEWS) have proven to reduce the frequency of clinical deterioration in hospitalized patients. This qualitative study evaluates provider perspectives on the impact of PEWS on quality of care during deterioration events in a high-resource and a resource-limited setting.We conducted semi-structured interviews with 83 healthcare staff (nurses, pediatricians, oncology fellows, and intensivists) involved in recent deterioration events at two pediatric oncology hospitals of different resource levels: St. Jude Children's Research Hospital (SJCRH; n = 42) and Unidad Nacional de Oncología Pediátrica (UNOP; n = 41). Interviews were conducted in the participant's native language (English or Spanish), translated into English, and transcribed. Transcripts were coded and analyzed inductively.Providers discussed both positive and negative perspectives of clinical deterioration events. Content analysis revealed "teamwork," "experience with deterioration," "early awareness," and "effective communication" as themes associated with positive perception of events, which contributed to patient safety. Negative themes included "lack of communication," "inexperience with deterioration," "challenges with technology", "limited material resources," "false positive score," and "objective tool." Participants representing all disciplines across both institutions shared similar positive opinions. Negative opinions, however, differed between the two institutions, with providers at UNOP highlighting limited resources while those at SJCRH expressing concerns about technology misuse.Providers that care for children with cancer find PEWS valuable to improve the quality of hospital care, regardless of hospital resource-level. Identified challenges, including inadequate critical care resources and challenges with technology, differ by hospital resource-level. These findings build on growing data demonstrating the positive impact of PEWS on quality of care and encourage wide dissemination of PEWS in clinical practice.

    View details for DOI 10.3389/fonc.2021.660051

    View details for Web of Science ID 000670059300001

    View details for PubMedID 34249696

    View details for PubMedCentralID PMC8260684

  • Hope-Colored Glasses: Perceptions of Prognosis Among Pediatric Oncology Patients and Their Parents JCO ONCOLOGY PRACTICE Levine, D. R., Cuviello, A., Nelson, C., Lu, Z., Mandrell, B. N., Baker, J. N. 2021; 17 (6): 347-E739

    Abstract

    Cancer patients' belief about prognosis can heavily influence medical decision making and goals of care. It is known that parents of children with cancer tend to be optimistic regarding their child's prognosis; however, little is known about pediatric patients' prognostic beliefs, how physicians' prognostic communication is perceived, and how these perceptions are compared with actual prognoses.An original survey was administered to 100 pediatric oncology patients, age 10-18 years, and their parents from 2013 to 2015, at St Jude Children's Research Hospital. Patients were eligible for inclusion if they had an oncologic diagnosis, were between 1 month and 1 year from diagnosis, and were English speaking. Survey responses regarding perceived prognosis were compared with actual prognoses as determined from the medical record review and published literature. Analysis included descriptive statistics and association tests.Nearly half of participants (patients = 48.9%, parents = 50.5%) displayed prognostic optimism as compared with the determined objective estimate of curative potential. The majority of both patients (78%) and parents (85%) reported belief in a very high chance of cure, although fewer reported that their physician communicated a very high chance for cure (patients = 57%, parents = 70%), and only 43% were determined to have a very high probability of cure. Significant differences were noted in prognostic optimism by cancer type (P < .0001); patients with solid tumor were more often optimistic (n = 25, 83.3% optimistic; n = 5, 16.7% accurate), and patients with lymphoma were most often accurate (n = 2, 8.7% optimistic; n = 21, 91.3% accurate).Pediatric oncology patients and parents tend to be optimistic about their chance of cure, as compared to both perceived prognostic communication from physicians and objective estimated prognosis. Understanding the nature of prognostic optimism among patients with cancer and caregivers may empower clinicians to guide realistic decision making while supporting hope.

    View details for DOI 10.1200/OP.20.00762

    View details for Web of Science ID 000708103200014

    View details for PubMedID 33661701

  • The intersectionality of gender and poverty on symptom suffering among adolescents with cancer PEDIATRIC BLOOD & CANCER Lyon, M. E., Cheng, Y. I., Needle, J., Friebert, S., Baker, J. N., Jiang, J., Wang, J. 2021; 68 (8): e29144

    Abstract

    To determine if the intersectionality of gender and poverty is associated with health disparities among adolescents with cancer. We hypothesized unobserved latent classes of patients exist with respect to cancer-related symptoms; and class classification varies by gender-poverty combinations.Cross-sectional data were collected among adolescents with cancer and families (N = 126 dyads) at four tertiary pediatric hospitals. Adolescents were aged 14-21 years, English speaking, cancer diagnosis, not developmentally delayed, psychotic, homicidal, suicidal, or severely depressed. Latent class analysis and multinomial logit models were used for analysis. Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric symptom measures, Short forms, evaluated anxiety, depressive symptoms, pain interference, and fatigue. Family-reported household income used 2016 Federal Poverty Level (FPL) guidelines.Three distinct groups of patients were identified using PROMIS symptom patterns: High Distress-25%; High Physical/Low Psychological Distress-14%; and Low Distress-62%. Female adolescents living in households with incomes at or below the 2016 FPL had 30 times the odds of being classified in the High Distress class (higher probabilities of experiencing anxiety, depressive symptoms, pain interference, and fatigue) compared to those in the High Physical/Low Psychological Distress class (female and poverty: AOR = 30.27, 95% CI 1.23, 735.10), and this was statistically significant (β = 3.41, 95% CI 0.21, 6.60; p = .04) but not compared to those in Low Distress.Adolescent females with cancer with households in poverty had significantly greater odds of experiencing high symptom distress, compared to those with high physical but low psychological distress. More comprehensive screening and intervention, as needed, may decrease disparities.

    View details for DOI 10.1002/pbc.29144

    View details for Web of Science ID 000656574500001

    View details for PubMedID 34061435

    View details for PubMedCentralID PMC8406702

  • Prognostic Communication Between Oncologists and Parents of Children With Advanced Cancer PEDIATRICS Kaye, E. C., Stall, M., Woods, C., Velrajan, S., Gattas, M., Lemmon, M., Baker, J. N., Mack, J. W. 2021; 147 (6)

    Abstract

    Parents of children with cancer perceive deficits in quality of prognostic communication. How oncologists disclose information about disease progression and incurability and how prognostic communication impacts parental understanding of prognosis are poorly understood. In this study, we aimed to (1) characterize communication strategies used by pediatric oncologists to share prognostic information across a child's advancing illness course and (2) explore relationships between different communication approaches and concordance of oncologist-parent prognostic understanding.In this prospective, longitudinal, mixed-methods study, serial disease reevaluation conversations were audio recorded across an advancing illness course for children with cancer and their families. Surveys and interviews also were conducted with oncologists and caregivers at specific time points targeting disease progression.Seventeen children experienced advancing illness on study, resulting in 141 recordings (40 hours). Fewer than 4% of recorded dialogue constituted prognostic communication, with most codes (77%) occurring during discussions about frank disease progression. Most recordings at study entry contained little or no prognosis communication dialogue, and oncologists rated curability lower than parents across all dyads. Parent-oncologist discordance typically was preceded by conversations without incurability statements; ultimately, concordance was achieved in most cases after the oncologist made direct statements about incurability. Content analysis revealed 3 distinct patterns (absent, deferred, and seed planting) describing the provision of prognostic communication across an advancing pediatric cancer course.When oncologists provided direct statements about incurability, prognostic understanding appeared to improve. Further research is needed to determine optimal timing for prognostic disclosure in alignment with patient and family preferences.

    View details for DOI 10.1542/peds.2020-044503

    View details for Web of Science ID 000658736700028

    View details for PubMedID 33952691

    View details for PubMedCentralID PMC8503785

  • Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT PEDIATRICS Thompkins, J. D., Needle, J., Baker, J. N., Briggs, L., Cheng, Y., Wang, J., Friebert, S., Lyon, M. E. 2021; 147 (6)

    Abstract

    Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain.In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire.Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93).Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.

    View details for DOI 10.1542/peds.2020-029330

    View details for Web of Science ID 000658736700038

    View details for PubMedID 33958436

    View details for PubMedCentralID PMC8442842

  • Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development CHILDREN-BASEL Spraker-Perlman, H. L., Aglio, T., Kaye, E. C., Levine, D., Barnett, B., Carter, K., McNeil, M., Clark, L., Baker, J. N., St Jude Quality Life Steering Coun 2021; 8 (6)

    Abstract

    As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care.

    View details for DOI 10.3390/children8060472

    View details for Web of Science ID 000666679100001

    View details for PubMedID 34205109

    View details for PubMedCentralID PMC8226717

  • Assume It Will Break: Parental Perspectives on Negative Communication Experiences in Pediatric Oncology JCO ONCOLOGY PRACTICE Sisk, B. A., Zavadil, J. A., Blazin, L. J., Baker, J. N., Mack, J. W., DuBois, J. M. 2021; 17 (6): 359-E871

    Abstract

    Communication breakdowns in pediatric oncology can have negative consequences for patients and families. A detailed analysis of these negative encounters will support clinicians in anticipating and responding to communication breakdowns.Semistructured interviews with 80 parents of children with cancer across three academic medical centers during treatment, survivorship, or bereavement. We analyzed transcripts using semantic content analysis.Nearly all parents identified negative communication experiences (n = 76). We identified four categories of contributors to negative experiences: individual (n = 68), team (n = 26), organization (n = 46), and greater health care system (n = 8). These experiences involved a variety of health care professionals across multiple specialties. Parents reported 12 personal consequences of communication breakdowns: emotional distress (n = 65), insufficient understanding (n = 48), decreased trust or confidence (n = 37), inconvenience (n = 36), medical harm (n = 23), decreased self-confidence (n = 17), decreased emotional support (n = 13), decreased engagement (n = 9), false hope (n = 9), decreased hope (n = 7), financial insult (n = 7), and decreased access to resources (n = 3). We identified five categories of supportive responses from clinicians: exploring (n = 8), acknowledging (n = 17), informing (n = 27), adapting (n = 27), and advocating (n = 18). Parents often increased their own advocacy on behalf of their child (n = 47). Parents also identified the need for parental engagement in finding solutions (n = 12). Finally, one parent suggested that clinicians should assume that communication will fail and develop contingency plans in advance.Communication breakdowns in pediatric oncology negatively affect parents and children. Clinicians should plan for communication breakdowns and respond by exploring, acknowledging, informing, adapting, advocating, and engaging parents in finding solutions.

    View details for DOI 10.1200/OP.20.01038

    View details for Web of Science ID 000708103200026

    View details for PubMedID 33848191

    View details for PubMedCentralID PMC8257978

  • Subjective Toxicity Profiles of Children in Treatment for Cancer: A New Guide to Supportive Care? JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Hinds, P. S., Weaver, M. S., Withycombe, J. S., Baker, J. N., Jacobs, S. S., Mack, J. W., Maurer, S. H., McFatrich, M., Pinheiro, L. C., Reeve, B. B., Wang, J. 2021; 61 (6): 1188-+

    Abstract

    Children and adolescents with cancer experience treatment-related, subjective adverse events (AEs). Identifying distinct groups of patients who predictably experience higher prevalence of AEs could guide patient care.Study aims were to 1) identify groups of children and adolescents reporting AEs using the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE); 2) determine whether demographic and clinical characteristics predict AE group membership; and 3) examine whether AE group membership was related to the distal outcome of psychological stress.Four hundred seventy-seven patients self-reported AEs via the Ped-PRO-CTCAE at T1 (beginning of treatment) and the PROMIS Pediatric Psychological Stress measure at T2 (7-28 days later). Latent class analysis was conducted to identify groups of patients and the relationships of the groups with demographic and clinical characteristics, and with stress.Three distinct a priori unknown AE groups were identified (high AE prevalence, moderate AE prevalence, and low AE prevalence). Females, blacks, patients with high psychological stress, and patients more recently diagnosed were more likely to be in the high AE prevalence group. Gender, age, race, and time since diagnosis were associated with psychological stress.Children with cancer are heterogeneous in experiencing subjective AEs. Gender, race, and time since diagnosis were significantly associated with higher subjective AE prevalence that may lead to psychological stress.

    View details for DOI 10.1016/j.jpainsymman.2020.10.017

    View details for Web of Science ID 000681625600011

    View details for PubMedID 33096220

    View details for PubMedCentralID PMC8055722

  • The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review. Journal of pain and symptom management Kaye, E. C., Weaver, M. S., DeWitt, L. H., Byers, E., Stevens, S. E., Lukowski, J., Shih, B., Zalud, K., Applegarth, J., Wong, H. N., Baker, J. N., Ullrich, C. K. 2021; 61 (5): 1060-1079.e2

    Abstract

    Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown.We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains.We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization.We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication.SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.

    View details for DOI 10.1016/j.jpainsymman.2020.12.003

    View details for PubMedID 33348034

    View details for PubMedCentralID PMC9896574

  • Development of a Structured Peer Mentoring Program for Support of Parents and Caregivers of Children with Cancer JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES Berry-Carter, K., Barnett, B., Canavera, K., Baker, J. N., Mandrell, B. N. 2021; 59: 131-136

    Abstract

    Parents of children newly diagnosed with cancer have increased anxiety, depression, and numerous questions. Many of these concerns can only be answered by parents who have undergone a similar experience.Our institution lacked a formal parent-to-parent mentoring program for parents of children newly diagnosed with cancer.The Parent Family Advisory Council (PFAC) recommended implementation of a formalized program that would promote a structured approach to mentoring, with a formal referral process and designated parent mentors who had been vetted, trained, and supported by the institution.In 2010, a pilot parent-to-parent mentoring program was initiated.Since the programs initiation, 4062 encounters have been documented. This represents an annual average of 72 mentees paired with 20 mentors, averaging 677 annual encounters. Parents view the mentoring relationship as positive and report that they feel understood, less anxious, and less isolated.We show that a parent-to-parent mentoring program is feasible and sustainable over time. Our model is now transitioning from a staff referral to self-referral, as well as incorporating real-time mentoring into the new commons area for patients and their families. A formal volunteer mentoring program can assist parents in navigating the trajectory of childhood cancer, decreasing isolation.

    View details for DOI 10.1016/j.pedn.2021.03.031

    View details for Web of Science ID 000677490000035

    View details for PubMedID 33878538

  • "Don't be afraid to speak up": Communication advice from parents and clinicians of children with cancer PEDIATRIC BLOOD & CANCER Sisk, B. A., Keenan, M. A., Blazin, L. J., Kaye, E., Baker, J. N., Mack, J. W., DuBois, J. M. 2021; 68 (8): e29052

    Abstract

    Parents and clinicians of children with cancer can provide advice to improve communication that reflects lessons learned through experience. We aimed to identify categories of communication advice offered to parents of children with cancer from clinicians and other parents.(1) Semi-structured interviews with 80 parents of children with cancer at three sites; (2) single-item, open-ended survey administered following 10 focus groups with 58 pediatric oncology clinicians at two sites. We asked participants for communication advice to parents, and analyzed responses using semantic content analysis.Parents provided five categories of communication advice to other parents. Advocacy involved asking questions, communicating concerns, and speaking up for the child. Support involved pursuing self-care, seeking and accepting help, and identifying supportive communities. Managing information involved taking and organizing notes, remaining open to difficult truths, and avoiding inaccurate information. Partnership involved establishing open lines of communication with clinicians, making the family's values and priorities known, and trusting the clinical team. Engaging and supporting the child involved, understanding and incorporating the child's preferences and values, and creating a loving environment. Clinicians' advice addressed similar categories, although only one clinician described engaging and supporting the child. Furthermore, parental advice expanded beyond interactions with the clinical team, whereas clinician advice focused more on the role of clinicians.Parents and clinicians of children with cancer provided five categories of communication advice. With these data, clinicians, health care organizations, support groups, and patient advocates could offer experience-informed advice to parents who are seeking information and support.

    View details for DOI 10.1002/pbc.29052

    View details for Web of Science ID 000640605900001

    View details for PubMedID 33861026

    View details for PubMedCentralID PMC8286806

  • Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review PEDIATRICS McNeil, M. J., Baker, J. N., Snyder, I., Rosenberg, A. R., Kaye, E. C. 2021; 147 (4)

    Abstract

    The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored.We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child.We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death.Extracted domains included study design, demographics, findings, and quality assessment.We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers.Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data.Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.

    View details for DOI 10.1542/peds.2020-040386

    View details for Web of Science ID 000636287700053

    View details for PubMedID 33648950

  • Engaging Parents of Children Who Died From Cancer in Research on the Early Grief Experience JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Snaman, J. M., Helton, G., Baker, J. N., Morris, S. E., Al-Sayegh, H., Ma, C., Wolfe, J. 2021; 61 (4): 781-788

    Abstract

    Bereaved parents provide an important perspective for improving care for patients and families throughout the illness and after a child's death. However, involvement of bereaved parents in research studies is fraught with concerns over inflicting psychological distress and issues with study recruitment. Data on research strategies to engage parents early in their bereavement are limited.To describe involvement of bereaved parents in the development of a comprehensive survey, examine the response rates with varying recruitment strategies and describe participation experiences of parent participants.Parents of children who endured the death of their child from cancer six to 24 months prior were invited to complete a 195-item survey examining their early grief experience.Forty-nine of the 137 eligible parents from 36 different households completed the survey (response rate 36%). The respondents were predominantly white (N = 43; 88%), female (N = 32; 65%), and non-Hispanic (N = 43; 88%). The median length of time from child's death to survey completion was 11 months (range 7-26). Thirty parents (61%) indicated they were comfortable/very comfortable answering the survey, 40 (82%) answered that they experienced at least a little benefit from involvement, and 36 (73%) indicated they experienced at least some distress.Some parents of children who died of cancer are willing to participate in research early in their bereavement, and although most experience some distress, they are comfortable answering questions about their experience and benefit from participation. Recruitment strategies including personal outreach may result in better response rates.

    View details for DOI 10.1016/j.jpainsymman.2020.09.014

    View details for Web of Science ID 000633052700008

    View details for PubMedID 32949763

  • Clinician Emotions Surrounding Pediatric Oncology Patient Deterioration FRONTIERS IN ONCOLOGY Graetz, D. E., Giannars, E., Kaye, E. C., Garza, M., Ferrara, G., Rodriguez, M., Soberanis Vasquez, D., Mendez Aceituno, A., Antillon-Klussmann, F., Gattuso, J. S., Andes, K. L., Mandrell, B. N., Baker, J. N., Rodriguez-Galindo, C., Agulnik, A. 2021; 11: 626457

    Abstract

    Pediatric oncology patients have a high rate of clinical deterioration frequently requiring critical care. Patient deterioration events are distressing for clinicians, but little is known about how Pediatric Early Warning Systems (PEWS) impact clinicians' emotional responses to deterioration events.Semi-structured interviews were conducted with 83 nurses, pediatricians, oncologists, and intensive care clinicians who had recently participated in a patient deterioration event at two pediatric oncology hospitals of different resource-levels: St. Jude Children's Research Hospital (N = 42 participants) in Memphis, Tennessee or Unidad Nacional de Oncología Pediátrica (N = 41 participants) in Guatemala City, Guatemala. Interviews were conducted in the participants' native language (English or Spanish), transcribed, and translated into English. Each transcript was coded by two researchers and analyzed for thematic content.Emotions around patient deterioration including concern, fear, and frustration were reported across all disciplines at both hospitals. Concern was often triggered by an elevated PEWS score and usually resulted in increased attention, which reassured bedside clinicians that patients were receiving necessary interventions. However, persistently elevated PEWS scores, particularly at St. Jude Children's Research Hospital, occasionally resulted in a false sense of relief, diminishing clinician attention and negatively impacting patient care. Nurses at both institutions described how PEWS amplified their voices, engendering confidence and empowerment, two of the only positive emotions described in the study.Clinicians experienced a range of emotions while caring for high-risk patients in the setting of clinical deterioration. These emotions have the potential to contribute to compassion fatigue and burnout, or to resilience. Acknowledgment and further investigation of the complex interplay between PEWS and clinician emotions are necessary to maximize the impact of PEWS on patient safety while simultaneously supporting staff wellbeing.

    View details for DOI 10.3389/fonc.2021.626457

    View details for Web of Science ID 000627365300001

    View details for PubMedID 33718195

    View details for PubMedCentralID PMC7947818

  • Multilevel barriers to communication in pediatric oncology: Clinicians' perspectives CANCER Sisk, B. A., Friedrich, A. B., Kaye, E. C., Baker, J. N., Mack, J. W., DuBois, J. M. 2021; 127 (12): 2130-2138

    Abstract

    Communication serves several functions in pediatric oncology, but communication deficiencies persist. Little is known about the broad spectrum of barriers contributing to these deficiencies. Identifying these barriers will support new strategies to improve communication.The authors performed 10 focus groups on perceived communication barriers with nurses, nurse practitioners, physicians, and psychosocial professionals across 2 academic institutions. They analyzed transcripts by adapting a multilevel framework from organizational psychology.The authors identified 6 levels of barriers to communication from the clinicians' perspectives: individual, team, organization, collaborating hospital, community, and policy. Individual barriers were subdivided into clinician characteristics, family characteristics, or characteristics of the clinician-family interaction. Within each level and sublevel, several manifestations of barriers were identified. Some barriers, such as a lack of comfort with difficult topics (individual), cultural differences (individual), a lack of a shared team mental model (team), and time pressure (organization), manifested similarly across professions and institutions. Other barriers, such as a need for boundaries (individual), intimidation or embarrassment of family (individual), unclear roles and authority (team), and excessive logistical requirements (policy), manifested differently across professions. With the exception of collaborating hospitals, participants from all professions identified barriers from each level. Physicians did not discuss collaborating hospital barriers.Nurses, nurse practitioners, physicians, and psychosocial professionals experience communication barriers at multiple levels, which range from individual- to policy-level barriers. Yet their unique clinical roles and duties can lead to different manifestations of some barriers. This multilevel framework might help clinicians and researchers to identify targets for interventions to improve communication experiences for families in pediatric oncology.Clinicians and families experience many barriers to communication in pediatric oncology. The authors performed 10 focus groups with 59 clinicians who cared for children with cancer. In these focus groups, barriers to effective communication were discussed. In this article, the authors report on an analysis of the responses. Six levels of barriers to communication were found: individual, team, organization, collaborating hospital, community, and policy. With an understanding of these barriers, interventions can be developed to target these barriers in hopes of improving communication for parents and patients in pediatric oncology.

    View details for DOI 10.1002/cncr.33467

    View details for Web of Science ID 000618870600001

    View details for PubMedID 33598930

    View details for PubMedCentralID PMC8154640

  • Parental views on communication between children and clinicians in pediatric oncology: a qualitative study SUPPORTIVE CARE IN CANCER Sisk, B. A., Schulz, G. L., Blazin, L. J., Baker, J. N., Mack, J. W., DuBois, J. M. 2021; 29 (9): 4957-4968

    Abstract

    Communication is essential to providing family-centered care in pediatric oncology. Previously, we developed a functional model of communication between parents and clinicians. Prior research has not examined the domains and purposes of communication between children and clinicians. We explored parental perspectives to begin understanding this communication.Secondary analysis of semi-structured interviews with 80 parents of children with cancer across 3 academic medical centers during treatment, survivorship, or bereavement. We employed semantic content analysis, using the functional model of parental communication as an a priori framework.We identified 6 distinct functions of communication in child-clinician interactions: building relationships, promoting patient engagement, addressing emotions, exchanging information, managing uncertainty, and fostering hope. These communication functions were identified by parents of older (> 13 years old) and younger (< 12 years old) children, although the specific manifestations sometimes differed by age. Notably, age was not always an indicator of the child's communication needs. For example, some parents noted older children who did not want to discuss difficult topics, whereas other parent described younger children who wanted to know every detail. Two functions from the previous parental model of communication were absent from this analysis: supporting family self-management and making decisions.Interviews with 80 parents provided evidence for 6 distinct functions of communication between children and clinicians. These functions apply to older and younger children, although specific manifestations might vary by age. This functional model provides a framework to guide clinicians' communication efforts and future communication research.

    View details for DOI 10.1007/s00520-021-06047-6

    View details for Web of Science ID 000616737000002

    View details for PubMedID 33569673

    View details for PubMedCentralID PMC8295182

  • NCCN Guidelines Insights: Palliative Care, Version 2.2021. Journal of the National Comprehensive Cancer Network : JNCCN Dans, M., Kutner, J. S., Agarwal, R., Baker, J. N., Bauman, J. R., Beck, A. C., Campbell, T. C., Carey, E. C., Case, A. A., Dalal, S., Doberman, D. J., Epstein, A. S., Fecher, L., Jones, J., Kapo, J., Lee, R. T., Loggers, E. T., McCammon, S., Mitchell, W., Ogunseitan, A. B., Portman, D. G., Ramchandran, K., Sutton, L., Temel, J., Teply, M. L., Terauchi, S. Y., Thomas, J., Walling, A. M., Zachariah, F., Bergman, M. A., Ogba, N., Campbell, M. 2021; 19 (7): 780-788

    Abstract

    Palliative care has evolved to be an integral part of comprehensive cancer care with the goal of early intervention to improve quality of life and patient outcomes. The NCCN Guidelines for Palliative Care provide recommendations to help the primary oncology team promote the best quality of life possible throughout the illness trajectory for each patient with cancer. The NCCN Palliative Care Panel meets annually to evaluate and update recommendations based on panel members' clinical expertise and emerging scientific data. These NCCN Guidelines Insights summarize the panel's recent discussions and highlights updates on the importance of fostering adaptive coping strategies for patients and families, and on the role of pharmacologic and nonpharmacologic interventions to optimize symptom management.

    View details for DOI 10.6004/jnccn.2021.0033

    View details for PubMedID 34340208

  • Investigation of Modifiable Variables to Increase Hospice Nurse Comfort With Care Provision to Children and Families in the Community: A Population-Level Study Across Tennessee, Mississippi, and Arkansas JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Kaye, E. C., Gattas, M., Kiefer, A., Reynolds, J., Zalud, K., Li, C., Lu, Z., Baker, J. N. 2020; 60 (6): 1144-1153

    Abstract

    Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not well understood.To determine whether modifiable variables are associated with increased hospice nurse comfort with PPHC provision in the community.A cross-sectional survey was developed, pilot tested, and distributed to hospice nurses across a tristate region to assess nurse training experiences and comfort with PPHC provision. Targeted subanalyses were conducted to investigate associations between nurse comfort level and clinical, training, and patient frequency variables.A total of 551 respondents representing 71 hospices across Tennessee, Arkansas, and Mississippi completed surveys. Hospice nurse comfort with provision of care to children was statistically significantly associated with exposure to prior PPHC clinical experiences (P < 0.001), receipt of formal pediatric PPHC training (P < 0.001), and higher hospice-level (P = 0.01) and individual-level frequency of PPHC provision (P < 0.001). PPHC clinical experience was the most impactful variable with respect to comfort with overall and end-of-life PPHC provision; formal training was the most impactful variable with respect to comfort with management of severe symptoms at the end of life.Modifiable variables exist that are readily targetable to improve hospice nurse comfort with PPHC provision. These findings should inform the development and investigation of clinical and educational interventions to empower both nurses and hospices to optimize the provision of quality care to children with serious illness and their families in the community.

    View details for DOI 10.1016/j.jpainsymman.2020.06.036

    View details for Web of Science ID 000591711900014

    View details for PubMedID 32622898

    View details for PubMedCentralID PMC7680295

  • Interdisciplinary care of pediatric oncology patients in Central America and the Caribbean CANCER Graetz, D. E., Chen, Y., Devidas, M., Antillon-Klussmann, F., Fu, L., Quintero, K., Fuentes-Alabi, S. L., Gassant, P. Y., Kaye, E. C., Baker, J. N., Galindo, C., Mack, J. W. 2021; 127 (14): 2579-2586

    Abstract

    Interdisciplinary teamwork supports high-quality cancer care and effective utilization of limited resources. This study purposed to examine the value, structure, process, and effectiveness of interdisciplinary care (IDC) among pediatric oncology providers in low-income and middle-income countries in Central America and the Caribbean.A cross-sectional survey was disseminated to pediatric oncology providers at 5 centers participating in the Pediatric Hematology-Oncology Association of Central America. The survey included previously validated items and novel questions assessing the value (importance), structure (multidisciplinary meeting attendance), process (team climate), and effectiveness (job satisfaction, quality of care and communication) of IDC.The survey was completed by 174 providers, including 22 oncologists, 9 pathologists, 9 radiologists, 5 radiation oncologists, 12 surgeons, 35 subspecialists, 60 nurses, 20 psychosocial providers, and 2 other staff. Participants agreed that IDC benefits team members (95%) and patients (96%). IDC structure and processes varied across the region. Multidisciplinary meeting attendance differed by center (P = .005) and discipline (P < .0001). Participants who frequently attended multidisciplinary meetings reported a more positive team climate (P = .0003). Team climate was positively associated with job satisfaction (P < .001). In multivariable analyses, team climate was predictive of an improved perception of communication between professionals (P < .0001), with families (P < .0001), and with patients (P = .0005), as well as with quality of the care environment (P = .006) and overall care quality (P < .0001).Nearly all surveyed participants valued IDC, and the structure and processes supporting IDC varied by center. Associations between a collaborative professional climate, job satisfaction, and the perception of quality care encourage continued investigation and prioritization of IDC in these settings.

    View details for DOI 10.1002/cncr.33339

    View details for Web of Science ID 000592028200001

    View details for PubMedID 33237591

  • Validity and Reliability of the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events JNCI-JOURNAL OF THE NATIONAL CANCER INSTITUTE Reeve, B. B., McFatrich, M., Mack, J. W., Maurer, S. H., Jacobs, S. S., Freyer, D. R., Withycombe, J. S., Baker, J. N., Castellino, S. M., Lin, L., Lucas, N. R., Hinds, P. S. 2020; 112 (11): 1143-1152

    Abstract

    Patient-reported outcome (PRO) measurements linked to Common Terminology Criteria for Adverse Events (CTCAE) grading may improve symptom adverse event (AE) reporting in pediatric oncology trials. We evaluated construct validity, responsiveness, and test-retest reliability of the Ped-PRO-CTCAE measurement system for children and adolescents undergoing cancer care.A total of 482 children and adolescents (7-18 years, 41.5% not non-Hispanic white) newly diagnosed with cancer and their caregivers participated from nine pediatric oncology hospitals. Surveys were completed at 72 hours preceding treatment initiation (T1) and at follow-up (T2) approximately 7-17 days later for chemotherapy, and 4+ weeks for radiation. Psychometric analyses examined the relationship of Ped-PRO-CTCAE items (assessing 62 symptom AEs) with Patient-Reported Outcomes Measurement Information System, Memorial Symptom Assessment Scale, Lansky Play-Performance Scale, and medication use. A separate test-retest study included 46 children.Ped-PRO-CTCAE and Memorial Symptom Assessment Scale were strongly correlated across age groups at T2: 7-12 years (r = 0.62-0.80), 13-15 years (r = 0.44-0.94), and 16-18 years (r = 0.65-0.98); and over time. The Ped-PRO-CTCAE was strongly correlated with Patient-Reported Outcomes Measurement Information System Pediatric measures at T2; for example, pain interference (r = 0.70, 95% confidence interval [CI] = 0.64 to 0.76), fatigue severity (r = 0.63, 95% CI = 0.56 to 0.69), and depression severity (r = 0.76, 95% CI = 0.71 to 0.81). Ped-PRO-CTCAE items differentiated children by Lansky Play-Performance Scale and by medication use. Test-retest agreement ranged from 54.3% to 93.5%.This longitudinal study provided evidence for the construct validity and reliability of the core Ped-PRO-CTCAE symptom AE items relative to several established measures. Additional responsiveness data with clinical anchors are recommended. Incorporation of Ped-PRO-CTCAE in trials may lead to a better understanding of the cancer treatment experience.

    View details for DOI 10.1093/jnci/djaa016

    View details for Web of Science ID 000594984100009

    View details for PubMedID 31999349

    View details for PubMedCentralID PMC7669229

  • <i>MyPref</i>: pilot study of a novel communication and decision-making tool for adolescents and young adults with advanced cancer SUPPORTIVE CARE IN CANCER Snaman, J. M., Helton, G., Holder, R. L., Wittenberg, E., Revette, A., Tulsky, J. A., Baker, J. N., Wolfe, J. 2021; 29 (6): 2983-2992

    Abstract

    Adolescents and young adults (AYAs) with cancer report feeling ill-informed about their cancer treatment options. Tools are needed to inform AYAs about treatment choices and amplify the AYA's voice in medical decision-making. We developed MyPref, a conjoint-analysis based tool that quantifies AYA preferences for future cancer treatments.We conducted a staged pilot study of MyPref utilizing an intervention mixed methods design. AYAs and their parent or trusted person (PTP) completed MyPref and received a summary report of their preferences for treatment-related factors. Participants later completed the Preparation for Decision Making Scale and MyPref Experience Questionnaire and engaged in semi-structured interviews. Oncologists reported on the perceived accuracy and utility of MyPref. We used a weaving technique for presenting mixed methods data.Fifteen AYAs with advanced cancer, 7 PTPs, and 12 providers participated in this pilot; 32 (94%) completed all study items. AYA/PTPs stated study participation was useful and believed MyPref allowed for improved understanding of treatment factors and consideration, organization, and visualization of preferences. All providers agreed that MyPref made them think about patient's preferences and 9 (75%) reported they planned to change their approach to discussions about preferences for future treatments.MyPref is an objective way to estimate AYA and PTP preferences for future treatment characteristics. This novel tool may be a useful way to engage AYAs and PTPs in discussions around preferences for treatment and prepare AYAs for future decision-making. We are currently evaluating this tool longitudinally to determine the impact on actual treatment decisions.

    View details for DOI 10.1007/s00520-020-05806-1

    View details for Web of Science ID 000577968200002

    View details for PubMedID 33030597

    View details for PubMedCentralID 4629487

  • Identification of adolescents and young adults' preferences and priorities for future cancer treatment using a novel decision-making tool PEDIATRIC BLOOD & CANCER Snaman, J. M., Helton, G., Holder, R. L., Revette, A., Baker, J. N., Wolfe, J. 2021; 68 (1): e28755

    Abstract

    Adolescents and young adults (AYAs) with cancer receive high-intensity care and experience significant symptoms at the end of life. As novel cancer-directed therapies increase, AYAs with advanced cancer may face multiple treatment options, each with unique risk/benefit profiles. To augment the AYAs' voice in the decision-making process, we developed MyPref, an adaptive conjoint analysis-based tool.We conducted a three-staged pilot study of MyPref utilizing an exploratory intervention mixed methods design. AYAs and their identified parent or trusted person (PTP) completed MyPref and received a summary of their preferences for nine treatment-related factors. Participants later engaged in semi-structured interviews to further explore their experience with MyPref. Responses to free text questions and interviews were analyzed using qualitative techniques.Fifteen AYAs with advanced cancer and seven PTPs participated in the pilot. While most participants identified time until cancer grows, quality of life, and side effects to be the most important factors when considering a future treatment, preferences were highly varied. Notably, MyPref-calculated preferences differed from initial rank order, and participants indicated that calculated preferences were accurate in follow-up interviews.The MyPref-calculated preferences varied by individual and differed from initial rank ordering. Additionally, there was variability in how individuals defined and prioritized treatment-related factors. This novel tool may be a useful way to engage AYAs and their PTPs in discussions around preferences for treatment and prepare AYAs for future decision making. We plan to evaluate this tool longitudinally to evaluate the impact on actual treatment decisions.

    View details for DOI 10.1002/pbc.28755

    View details for Web of Science ID 000574995000001

    View details for PubMedID 33017087

  • Racial and Ethnic Differences in Communication and Care for Children With Advanced Cancer JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Mack, J. W., Uno, H., Twist, C. J., Bagatell, R., Rosenberg, A. R., Marachelian, A., Granger, M., Bender, J., Baker, J. N., Park, J. R., Cohn, S. L., Fernandez, J. H., Diller, L. R., Shusterman, S. 2020; 60 (4): 782-789

    Abstract

    Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer.To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.We conducted a prospective cohort study at nine pediatric cancer centers enrolling 95 parents (42% racial/ethnic minorities) of children with poor prognosis cancer (relapsed/refractory high-risk neuroblastoma). Parents were surveyed about whether prognosis was discussed; likelihood of cure; intent of current treatment; and primary goal of care. Medical records were used to identify high-intensity medical care since the most recent recurrence. Logistic regression evaluated differences between white non-Hispanic and minority (black, Hispanic, and Asian/other race) parents.About 26% of parents recognized the child's low likelihood of cure. Minority parents were less likely to recognize the poor prognosis (odds ratio [OR] = 0.19; 95% CI = 0.06-0.63; P = 0.006) and the fact that current treatment was unlikely to offer cure (OR = 0.07; 95% CI = 0.02-0.27; P < 0.0001). Children of minority parents were more likely to experience high-intensity medical care (OR = 3.01; 95% CI = 1.29-7.02; P = 0.01). After adjustment for understanding of prognosis, race/ethnicity was no longer associated with high-intensity medical care (adjusted odds ratio = 2.14; 95% CI = 0.84-5.46; P = 0.11), although power to detect an association was limited.Parental understanding of prognosis is limited across racial and ethnic groups; racial and ethnic minorities are disproportionately affected. Perhaps as a result, minority children experience higher rates of high-intensity medical care. Work to improve prognostic understanding should include focused work to meet needs of minority populations.

    View details for DOI 10.1016/j.jpainsymman.2020.04.020

    View details for Web of Science ID 000572682000018

    View details for PubMedID 32360991

    View details for PubMedCentralID PMC7523916

  • Shared spiritual beliefs between adolescents with cancer and their families PEDIATRIC BLOOD & CANCER Livingston, J., Cheng, Y. I., Wang, J., Tweddle, M., Friebert, S., Baker, J. N., Thompkins, J., Lyon, M. E. 2020; 67 (12): e28696

    Abstract

    FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning.As part of four-site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy-spiritual well-being- version 4 (FACIT-Sp-EX-4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence-adjusted and bias-adjusted kappa (PABAK) measured congruence on FACIT-Sp-EX-4.Adolescents (126) had mean age of 16.9 years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n = 18), Protestant (n = 76), Mormon (n = 3), none/atheist (n = 22), other (n = 5), and unknown (n = 2). Agreement at item level between spiritual well-being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: "I have a reason for living," "I feel loved," "I feel compassion for others in the difficulties they are facing." Three items had <61% agreement and Poor PABAK: "I feel a sense of harmony within myself," "My illness has strengthened my faith or spiritual beliefs," "I feel connected to a higher power (or God)." Dyadic congruence was compared by social-demographics using median one-way analysis. Male family members (median = 72%) were less likely to share spiritual beliefs with their adolescent than female family members (median = 83%), P = .0194.Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well-being for adolescents.

    View details for DOI 10.1002/pbc.28696

    View details for Web of Science ID 000568397400001

    View details for PubMedID 32918519

    View details for PubMedCentralID PMC7699821

  • Communication in Pediatric Oncology: A Qualitative Study PEDIATRICS Sisk, B. A., Friedrich, A., Blazin, L. J., Baker, J. N., Mack, J. W., DuBois, J. 2020; 146 (3)

    Abstract

    When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these communication functions from parental perspectives.Semistructured interviews with 78 parents of children with cancer from 3 academic medical centers at 1 of 3 time points: treatment, survivorship, or bereavement. We analyzed interview transcripts using inductive and deductive coding.We identified 8 distinct functions of communication in pediatric oncology. Six of these functions are similar to previous findings from adult oncology: (1) building relationships, (2) exchanging information, (3) enabling family self-management, (4) making decisions, (5) managing uncertainty, and (6) responding to emotions. We also identified 2 functions not previously described in the adult literature: (7) providing validation and (8) supporting hope. Supporting hope manifested as emphasizing the positives, avoiding false hopes, demonstrating the intent to cure, and redirecting toward hope beyond survival. Validation manifested as reinforcing "good parenting" beliefs, empowering parents as partners and advocates, and validating concerns. Although all functions seemed to interact, building relationships appeared to provide a relational context in which all other interpersonal communication occurred.Parent interviews provided evidence for 8 distinct communication functions in pediatric oncology. Clinicians can use this framework to better understand and fulfill the communication needs of parents whose children have serious illness. Future work should be focused on measuring whether clinical teams are fulfilling these functions in various settings and developing interventions targeting these functions.

    View details for DOI 10.1542/peds.2020-1193

    View details for Web of Science ID 000562996900061

    View details for PubMedID 32820068

    View details for PubMedCentralID PMC7461134

  • Barriers to the early integration of palliative care in pediatric oncology in 11 Eurasian countries CANCER Ehrlich, B. S., Movsisyan, N., Batmunkh, T., Kumirova, E., Borisevich, M., Kirgizov, K., Graetz, D. E., McNeil, M. J., Yakimkova, T., Vinitsky, A., Ferrara, G., Li, C., Lu, Z., Kaye, E. C., Baker, J. N., Agulnik, A., Assessing Doctors Attitudes Pallia 2020; 126 (22): 4984-4993

    Abstract

    The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care, particularly in low-income and middle-income countries. To date, little is known regarding the timing of and barriers to palliative care integration in Eurasia.The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey evaluates physician perceptions regarding palliative care integration into pediatric oncology in Eurasia. This evidence-based survey was adapted to the regional context; iteratively reviewed by US and regional panelists; and piloted in English, Russian, and Mongolian. After distribution to physicians caring for children with cancer, statistical analysis was complemented by qualitative analysis of open-ended responses.A total of 424 physician responses were received from 11 countries in the Eurasian region. Study findings demonstrated wide variability in access to palliative care experts across countries (18%-96%), with the majority of providers (64%) reporting that the initial palliative care consultation typically occurs when curative options are no longer available. Providers desired an earlier initial palliative care consultation than what currently occurs in their setting (P < .001). Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance.The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care and associated barriers in Eurasia. These findings will inform the development of targeted interventions to mitigate local structural and cultural barriers to access and facilitate earlier palliative care integration in the region.

    View details for DOI 10.1002/cncr.33151

    View details for Web of Science ID 000560540500001

    View details for PubMedID 32813913

    View details for PubMedCentralID PMC7981844

  • Humanism and professionalism training for pediatric hematology-oncology fellows: Results of a multicenter randomized trial PEDIATRIC BLOOD & CANCER Kesselheim, J., Baker, J. N., Kersun, L., Lee-Miller, C., Moerdler, S., Snaman, J. M., Warwick, A., Weng, S., Zhang, Z., Collaborative Network Pediat Hemat 2020; 67 (11): e28308

    Abstract

    Although humanism and professionalism are central tenets to the practice of medicine, few formal curricula exist for medical trainees. Following a national needs assessment among pediatric hematology-oncology (PHO) fellows, we created a novel curriculum entitled "Humanism and Professionalism for Pediatric Hematology-Oncology" (HP-PHO). In this study, we measure outcomes of this curricular intervention.We cluster-randomized 20 PHO fellowship programs to deliver usual training in humanism and professionalism (UT) or the novel curriculum (intervention) during the 2016-2017 academic year. The primary outcome measure was the Pediatric Hematology-Oncology Self-Assessment in Humanism (PHOSAH). Secondary measures included the Maslach Burnout Inventory, Patient-Provider Orientation Scale, Empowerment at Work Scale, and a 5-point satisfaction scale. Participating fellows completed pre- and posttests at the beginning and end of the academic year, respectively, and we calculated change scores for each study instrument.Cluster randomization yielded 59 intervention and 41 UT fellows. The nine intervention sites administered 33 of 36 modules. Change scores on the PHOSAH were not significantly different between the UT and intervention arms. However, fellows on the intervention arm gave significantly higher ratings on several items within the satisfaction scale related to physician burnout, physician depression, balancing professional duties and personal life, and humanism overall.Exposure to the HP-PHO curriculum did not alter fellows' self-assessed humanism and professionalism skills. However, intervention fellows expressed significantly higher levels of satisfaction in their humanism training, indicating the curriculum's potential for positive impact on the fellows' perceived learning environment.

    View details for DOI 10.1002/pbc.28308

    View details for Web of Science ID 000553524900001

    View details for PubMedID 32729211

  • The state of the science for communication training in pediatric oncology: A systematic review PEDIATRIC BLOOD & CANCER Kaye, E. C., Cannone, D., Snaman, J. M., Baker, J. N., Spraker-Perlman, H. 2020; 67 (10): e28607

    Abstract

    Within the field of pediatric oncology, communication skills training (CST) has been recognized as a high priority by professional and accrediting organizations. However, the effectiveness of formalized CST interventions for pediatric oncology providers remains poorly understood. We systematically searched PubMed, Web of Science, Scopus, and PsycInfo for original research articles assessing the effectiveness and quality of CST interventions targeting pediatric oncology clinicians. From 971 deduplicated references, eight articles representing six communication interventions were eligible for inclusion. This review summarizes the existing literature with respect to CST content, intervention methodology, targeted outcome metrics, measurement tools, short-term and sustained benefits, design biases, and availability of materials to allow for reproduction of interventions. Ultimately, studies on CST in pediatric oncology are few, heterogeneous, and lacking in standardized outcome metrics; however, synthesis of the available literature suggests feasibility and effectiveness. Increased scientific rigor is needed, and specific recommendations to advance the field are described.

    View details for DOI 10.1002/pbc.28607

    View details for Web of Science ID 000551556200001

    View details for PubMedID 32706453

  • "Living life as if I never had cancer": A study of the meaning of living well in adolescents and young adults who have experienced cancer PEDIATRIC BLOOD & CANCER Schreiner, K., Grossoehme, D. H., Friebert, S., Baker, J. N., Needle, J., Lyon, M. E. 2020; 67 (10): e28599

    Abstract

    Cancer diagnoses pose challenges to adolescents' and young adults' (AYA) physical, mental, and emotional health, and developmental tasks. In order for AYAs, caregivers, clinicians, and other collaborators to optimize health outcomes (coproduction of health), understanding what living well means for AYAs who have experienced cancer is necessary. The objective was to develop an empirical definition of "living well" for AYAs who have experienced cancer to broadly understand AYA values and priorities. This definition may ultimately guide future conversations between caregivers and AYAs, eliciting thorough, personal definitions of living well from individual AYAs. Such conversations may enhance AYA participation in coproducing their health.Qualitative analysis using a phenomenological approach of N = 30 structured Respecting Choices interviews conducted with AYAs (14-21 years; mean 84.2 [SD 69] months postcancer diagnosis with 21% on active treatment) from four tertiary pediatric hospitals in the context of a primary study of a pediatric advance care planning intervention trial.AYAs who have experienced cancer conceptualized "living well" as maintaining physical, mental, and emotional health, as well as engaging in purposeful, age-appropriate activities with people important to them. Living well had three components: living mindfully, living an identity as a healthy AYA, and spending time with friends and family.Conversations with AYAs who have experienced cancer elicited rich, complex concepts of "living well." Provider initiation of discussions about living well may facilitate personalized goals of care conversations. This study may serve as the basis to design and prototype future clinical interventions to enhance AYA engagement.

    View details for DOI 10.1002/pbc.28599

    View details for Web of Science ID 000549808400001

    View details for PubMedID 32686240

    View details for PubMedCentralID PMC7719590

  • Association of Religious and Spiritual Factors With Patient-Reported Outcomes of Anxiety, Depressive Symptoms, Fatigue, and Pain Interference Among Adolescents and Young Adults With Cancer JAMA NETWORK OPEN Grossoehme, D. H., Friebert, S., Baker, J. N., Tweddle, M., Needle, J., Chrastek, J., Thompkins, J., Wang, J., Cheng, Y., Lyon, M. E. 2020; 3 (6): e206696

    Abstract

    The associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown.To model the association of spiritual and religious constructs with patient-reported outcomes of anxiety, depressive symptoms, fatigue, and pain interference.This cross-sectional study used baseline data, collected from 2016 to 2019, from an ongoing 5-year randomized clinical trial being conducted at 4 tertiary-referral pediatric medical centers in the US. A total of 366 adolescents were eligible for the clinical trial, and 126 were randomized; participants had to be aged 14 to 21 years at enrollment and be diagnosed with any form of cancer. Exclusion criteria included developmental delay, scoring greater than 26 on the Beck Depression Inventory II, non-English speaking, or unaware of cancer diagnosis.Spiritual experiences, values, and beliefs; religious practices; and overall self-ranking of spirituality's importance.Variables were taken from the Brief Multidimensional Measurement of Religiousness/Spirituality (ie, feeling God's presence, daily prayer, religious service attendance, being very religious, and being very spiritual) and the spiritual well-being subscales of the Functional Assessment of Chronic Illness Therapy (meaning/peace and faith). Predefined outcome variables were anxiety, depressive symptoms, fatigue, and pain interference from Patient-Reported Outcomes Measurement Information System pediatric measures.A total of 126 individuals participated (72 [57.1%] female participants; 100 [79.4%] white participants; mean [SD] age, 16.9 [1.9] years). Structural equation modeling showed that meaning and peace were inversely associated with anxiety (β = -7.94; 95% CI, -12.88 to -4.12), depressive symptoms (β = -10.49; 95% CI, -15.92 to -6.50), and fatigue (β = -8.90; 95% CI, -15.34 to -3.61). Feeling God's presence daily was indirectly associated with anxiety (β = -3.37; 95% CI, -6.82 to -0.95), depressive symptoms (β = -4.50; 95% CI, -8.51 to -1.40), and fatigue (β = -3.73; 95% CI, -8.03 to -0.90) through meaning and peace. Considering oneself very religious was indirectly associated with anxiety (β = -2.81; 95% CI, -6.06 to -0.45), depressive symptoms (β = -3.787; 95% CI, -7.68 to -0.61), and fatigue (β = -3.11, 95% CI, -7.31 to -0.40) through meaning and peace. Considering oneself very spiritual was indirectly associated with anxiety (β = 2.11; 95% CI, 0.05 to 4.95) and depression (β = 2.8, 95% CI, 0.07 to 6.29) through meaning and peace. No associations were found between spiritual scales and pain interference.In this study, multiple facets of spirituality and religiousness were associated with anxiety, depression, and fatigue, all of which were indirectly associated with the participant's sense of meaning and peace, which is a modifiable process. Although these results do not establish a causal direction, they do suggest palliative interventions addressing meaning-making, possibly including a spiritual or religious dimension, as a novel focus for intervention development.

    View details for DOI 10.1001/jamanetworkopen.2020.6696

    View details for Web of Science ID 000543365900001

    View details for PubMedID 32543698

    View details for PubMedCentralID PMC7298609

  • A multicountry assessment in Eurasia: Alignment of physician perspectives on palliative care integration in pediatric oncology with World Health Organization guidelines CANCER Ehrlich, B. S., Movsisyan, N., Batmunkh, T., Kumirova, E., Borisevich, M., Kirgizov, K., Graetz, D. E., McNeil, M. J., Yakimkova, T., Vinitsky, A., Ferrara, G., Li, C., Lu, Z., Kaye, E. C., Baker, J. N., Agulnik, A., ADAPT Res Grp 2020; 126 (16): 3777-3787

    Abstract

    The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care.The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses.This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-of-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care.This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context.

    View details for DOI 10.1002/cncr.33001

    View details for Web of Science ID 000539751100001

    View details for PubMedID 32530519

    View details for PubMedCentralID PMC7385991

  • Qualitative Study of Pediatric Early Warning Systems' Impact on Interdisciplinary Communication in Two Pediatric Oncology Hospitals With Varying Resources JCO GLOBAL ONCOLOGY Graetz, D., Kaye, E. C., Garza, M., Ferrara, G., Rodriguez, M., Soberanis Vasquez, D., Mendez Aceituno, A., Antillon-Klussmann, F., Gattuso, J. S., Mandrell, B. N., Baker, J. N., Rodriguez-Galindo, C., Mack, J. W., Agulnik, A. 2020; 6: 1079-1086

    Abstract

    Hospitalized pediatric oncology patients are at high risk of deterioration and require frequent interdisciplinary communication to deliver high-quality care. Pediatric early warning systems (PEWS) are used by hospitals to reduce deterioration, but it is unknown how these systems affect communication about patient care in high- and limited-resource pediatric oncology settings.This qualitative study included semistructured interviews describing PEWS and subsequent team communication at 2 pediatric cancer centers, 1 in the United States and 1 in Guatemala. Participants included nurses, and frontline and intensive care providers who experienced recent deterioration events. Transcripts were coded and analyzed inductively using MAXQDA software.The study included 41 providers in Guatemala and 42 providers in the United States (33 nurses, 30 ward providers, and 20 pediatric intensive care providers). Major themes identified include "hierarchy," "empowerment," "quality and method of communication," and "trigger." All providers described underlying medical hierarchies affecting the quality of communication regarding patient deterioration events and identified PEWS as empowering. Participants from the United States described the algorithmic approach to care and technology associated with PEWS contributing to impaired clinical judgement and a lack of communication. In both settings, PEWS sparked interdisciplinary communication and inspired action.PEWS enhance interdisciplinary communication in high- and limited-resource study settings by empowering bedside providers. Traditional hierarchies contributed to negative communication and, in well-resourced settings, technology and automation resulted in lack of communication. Understanding contextual elements is integral to optimizing PEWS and improving pediatric oncology outcomes in hospitals of all resource levels.

    View details for DOI 10.1200/GO.20.00163

    View details for Web of Science ID 000564861600020

    View details for PubMedID 32673079

    View details for PubMedCentralID PMC7392735

  • The COVID-19 pandemic: A rapid global response for children with cancer from SIOP, COG, SIOP-E, SIOP-PODC, IPSO, PROS, CCI, and St Jude Global PEDIATRIC BLOOD & CANCER Sullivan, M., Bouffet, E., Rodriguez-Galindo, C., Luna-Fineman, S., Khan, M., Kearns, P., Hawkins, D. S., Challinor, J., Morrissey, L., Fuchs, J., Marcus, K., Balduzzi, A., Basset-Salom, L., Caniza, M., Baker, J. N., Kebudi, R., Hessissen, L., Sullivan, R., Pritchard-Jones, K. 2020; 67 (7): e28409

    Abstract

    The COVID-19 pandemic is one of the most serious global challenges to delivering affordable and equitable treatment to children with cancer we have witnessed in the last few decades. This Special Report aims to summarize general principles for continuing multidisciplinary care during the SARS-CoV-2 (COVID-19) pandemic. With contributions from the leadership of the International Society for Pediatric Oncology (SIOP), Children's Oncology Group (COG), St Jude Global program, and Childhood Cancer International, we have sought to provide a framework for healthcare teams caring for children with cancer during the pandemic. We anticipate the burden will fall particularly heavily on children, their families, and cancer services in low- and middle-income countries. Therefore, we have brought together the relevant clinical leads from SIOP Europe, COG, and SIOP-PODC (Pediatric Oncology in Developing Countries) to focus on the six most curable cancers that are part of the WHO Global Initiative in Childhood Cancer. We provide some practical advice for adapting diagnostic and treatment protocols for children with cancer during the pandemic, the measures taken to contain it (e.g., extreme social distancing), and how to prepare for the anticipated recovery period.

    View details for DOI 10.1002/pbc.28409

    View details for Web of Science ID 000531863900001

    View details for PubMedID 32400924

    View details for PubMedCentralID PMC7235469

  • Grief and Bereavement in Parents After the Death of a Child in Low- and Middle-Income Countries CHILDREN-BASEL McNeil, M. J., Namisango, E., Hunt, J., Powell, R. A., Baker, J. N. 2020; 7 (5)

    Abstract

    While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole.

    View details for DOI 10.3390/children7050039

    View details for Web of Science ID 000542943200007

    View details for PubMedID 32369937

    View details for PubMedCentralID PMC7278603

  • The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Kaye, E. C., Weaver, M. S., DeWitt, L., Byers, E., Stevens, S. E., Lukowski, J., Shih, B., Zalud, K., Applegarth, J., Wong, H., Baker, J. N., Ullrich, C. K., AAHPM Res Comm 2020; 61 (5): 1060-+
  • Patient-reported outcomes in paediatric cancer survivorship: a qualitative study to elicit the content from cancer survivors and caregivers BMJ OPEN Pierzynski, J. A., Clegg, J. L., Sim, J., Forrest, C. B., Robison, L. L., Hudson, M. M., Baker, J. N., Huang, I. 2020; 10 (5): e032414

    Abstract

    Content elucidation for patient-reported outcomes (PROs) in paediatric cancer survivorship is understudied. We aimed to compare differences in the contents of five PRO domains that are important to paediatric cancer survivorship through semistructured interviews with paediatric cancer survivors and caregivers, and identified new concepts that were not covered in the item banks of the Patient-Reported Outcomes Measurement Information System (PROMIS).Semistructured interviews to collect qualitative PRO data from survivors and caregivers.A survivorship care clinic of a comprehensive cancer centre in the USA.The study included 51 survivors (<18 years old) and 35 caregivers who completed interviews between August and December 2016. Content experts coded the transcribed interviews into 'meaningful concepts' per PROMIS item concepts and identified new concepts per a consensus. Frequencies of meaningful concepts used by survivors and caregivers were compared by Wilcoxon rank-sum test.For pain and meaning and purpose, 'Hurt a lot' and 'Purpose in life' were top concepts for survivors and caregivers, respectively. For fatigue and psychological stress, 'Needed to sleep during the day'/'Trouble doing schoolwork' and 'Felt worried' were top concepts for survivors, and 'Felt tired' and 'Felt distress'/'Felt stressed' for caregivers. Survivors reported more physically relevant contents (eg, 'Hard to do sport/exercise'; 0.78 vs 0.23, p=0.007) for pain, fatigue and stress, whereas caregivers used more emotionally relevant concepts (eg, 'Too tired to enjoy things I like to do'; 0.31 vs 0.05, p=0.025). Both groups reported positive thoughts for meaning and purpose (eg, 'Have goals for myself'). One (psychological stress, meaning and purpose) to eleven (fatigue) new concepts were generated.Important PRO contents in the form of meaningful concepts raised by survivors and caregivers were different and new concepts emerged. PRO measures are warranted to include survivorship-specific items by accounting for the child's and the caregiver's viewpoints.

    View details for DOI 10.1136/bmjopen-2019-032414

    View details for Web of Science ID 000738373200008

    View details for PubMedID 32423926

    View details for PubMedCentralID PMC7239535

  • Regret and unfinished business in parents bereaved by cancer: A mixed methods study PALLIATIVE MEDICINE Lichtenthal, W. G., Roberts, K. E., Catarozoli, C., Schofield, E., Holland, J. M., Fogarty, J. J., Coats, T. C., Barakat, L. P., Baker, J. N., Brinkman, T. M., Neimeyer, R. A., Prigerson, H. G., Zaider, T., Breitbart, W., Wiener, L. 2020; 34 (3): 367-377

    Abstract

    Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited.The aim of this study was to examine regret and unfinished business in parents bereaved by cancer, as well as their associations with caregiving experiences and prolonged grief.This was a cross-sectional mixed methods study that utilized self-report questionnaires with open-ended items.The multisite study took place at a tertiary cancer hospital and pediatric cancer clinical research institution. Participants were 118 parents (mothers = 82, fathers = 36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years prior.Results showed that 73% of the parents endorsed regret and 33% endorsed unfinished business, both of which were more common among mothers than fathers (p ⩽ 0.05). Parents were on average moderately distressed by their regrets and unfinished business, and both regret-related and unfinished business-related distress were associated with distress while caregiving and prolonged grief symptoms.Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.

    View details for DOI 10.1177/0269216319900301

    View details for Web of Science ID 000512232000001

    View details for PubMedID 32020837

    View details for PubMedCentralID PMC7438163

  • Thoughts from the threshold: patient and family hopes, fears, values, and goals at the onset of pediatric hematopoietic cell transplantation BONE MARROW TRANSPLANTATION Levine, D. R., Van Noy, K., Talleur, A. C., Snyder, A., Kaye, E. C., Baker, J. N. 2020; 55 (6): 1103-1113

    Abstract

    Hematopoietic cell transplantation (HCT) affords curative potential for high-risk patients but also carries risk of morbidity and mortality. Early palliative care (PC) integration can aid in supporting patients and families, fostering goal-directed care, and maximizing quality-of-life throughout. However, little is known about patient and family hopes, worries, goals, or values in pediatric HCT. Through retrospective review of pretransplant PC consultations, this study sought to provide insights from this unique patient population. Across 100 initial PC encounters conducted between December 2015 and March 2018, patient and caregiver responses to five targeted questions were extracted and analyzed. Data analysis revealed themes related to patient quality-of-life, caregiver/parent role, hopes, and worries. The most commonly identified thematic responses within each topic area were patient quality-of-life "electronics/entertainment" (49%), caregiver/parent role "doing right by my child" (58%), hopes "cure" (83%), worries "potential side effects" (43%), other spirituality (34%), and resiliency (29%). These findings provide an understanding of the values, goals, priorities, hopes, and fears experienced by pediatric HCT patients and their families, which may help inform a targeted approach to improve communication and overall care throughout transplantation. Variability was noted, underscoring the importance of fostering flexible, patient/family-centered communication beginning in the pretransplant period.

    View details for DOI 10.1038/s41409-020-0794-8

    View details for Web of Science ID 000509840400009

    View details for PubMedID 31992844

    View details for PubMedCentralID PMC8722457

  • Unrealistic parental expectations for cure in poor-prognosis childhood cancer CANCER Mack, J. W., Cronin, A. M., Uno, H., Shusterman, S., Twist, C. J., Bagatell, R., Rosenberg, A., Marachelian, A., Granger, M., Bender, J., Baker, J. N., Park, J., Cohn, S. L., Levine, A., Taddei, S., Diller, L. R. 2020; 126 (2): 416-424

    Abstract

    Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor-prognosis childhood cancer.The authors conducted a prospective cohort study at 9 pediatric cancer centers that enrolled 95 parents of children with recurrent or refractory, high-risk neuroblastoma (63% of those who were approached), a condition for which cure rarely is achieved. Parents were surveyed regarding the child's likelihood of cure; their primary goal of care; the child's symptoms, suffering, and quality of life; and regret concerning the last treatment decision. Medical records identified care and treatment decisions.Only 26% of parents recognized that the chance of cure was <25%. When asked to choose a single most important goal of care, approximately 72% chose cure, 10% chose longer life, and 18% chose quality of life. Parents were more likely to prioritize quality of life when they recognized the child's poor prognosis (P = .002). Approximately 41% of parents expressed regret about the most recent treatment decision. Parents were more likely to experience regret if the child had received higher intensity medical care (odds ratio [OR], 3.14; 95% CI, 1.31-7.51), experienced suffering with limited benefit from the most recent treatment (OR, 4.78; 95% CI, 1.16-19.72), or experienced suffering from symptoms (OR, 2.91; 95% CI, 1.18-7.16).Parents of children with poor-prognosis cancer frequently make decisions based on unrealistic expectations. New strategies for effective prognosis communication are needed.

    View details for DOI 10.1002/cncr.32553

    View details for Web of Science ID 000506264400025

    View details for PubMedID 31584705

    View details for PubMedCentralID PMC7523918

  • Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment PEDIATRIC BLOOD & CANCER Reeve, B. B., McFatrich, M., Mack, J. W., Pinheiro, L. C., Jacobs, S. S., Baker, J. N., Withycombe, J. S., Lin, L., Mann, C. M., Villabroza, K. R., Hinds, P. S. 2020; 67 (4): e28160

    Abstract

    The Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric measures were designed to assess symptoms and functioning in children and adolescents. The study goal was to evaluate the validity and responsiveness of the PROMIS Pediatric measures in a diverse cohort of children with cancer.Children (7-18 years) from nine pediatric oncology hospitals completed surveys at 72 hours preceding treatment initiation (T1) and at follow-up (T2) approximately 7 to 17 days later for chemotherapy, and 4+ weeks later for radiation. Children completed PROMIS Pediatric measures (Mobility, Pain Interference, Fatigue, Depressive Symptoms, Anxiety, Psychological Stress), Memorial Symptom Assessment Scale (MSAS), and global impressions of change (GIC) questions on their symptoms and functioning at T2 reflecting on T1. Parents completed the Lansky Play-Performance Status (PPS) scale and medication list for their child.The children (n = 482) were average age 12.9 years, 46% female, 60% Caucasian, and had diverse cancers and treatments. There were moderate to strong correlations between PROMIS Pediatric and MSAS, supporting convergent validity. In support for known-groups validity, the PROMIS Pediatric average scores were statistically different (P < 0.05) for most domains by PPS and if the child was on a medication (or not) for controlling a symptom. The PROMIS Pediatric measures were responsive over time in association with the GIC.In a large, diverse sample of children and adolescents with cancer, there was strong evidence for the construct validity and responsiveness of the PROMIS Pediatric measures. This evidence supports PROMIS Pediatric measure use in pediatric oncology trials.

    View details for DOI 10.1002/pbc.28160

    View details for Web of Science ID 000505625800001

    View details for PubMedID 31904157

    View details for PubMedCentralID PMC7147933

  • Mapping child and adolescent self-reported symptom data to clinician-reported adverse event grading to improve pediatric oncology care and research CANCER McFatrich, M., Brondon, J., Lucas, N. R., Hinds, P. S., Maurer, S. H., Mack, J. W., Freyer, D. R., Jacobs, S. S., Baker, J. N., Mowbray, C., Wang, M., Castellino, S. M., Leahy, A., Reeve, B. B. 2020; 126 (1): 140-147

    Abstract

    Clinicians are the standard source for adverse event (AE) reporting in oncology trials, despite the subjective nature of symptomatic AEs. The authors designed a pediatric patient-reported outcome (PRO) instrument for symptomatic AEs to support the National Cancer Institute's Common Terminology Criteria for Adverse Events (CTCAE) (the Pediatric PRO-CTCAE). The current study developed a standardized algorithm that maps all possible Pediatric PRO-CTCAE response patterns to recommended CTCAE grades to improve the accuracy of AE reporting in pediatric oncology trials.Two rounds of surveys were administered to experienced cancer clinicians across 9 pediatric hospitals. In round 1, pediatric oncologists assigned CTCAE grades to all 101 possible Pediatric PRO-CTCAE response patterns. The authors evaluated clinician agreement of CTCAE grades across response patterns and categorized each response pattern as having high or low agreement. In round 2, a survey was sent to a larger clinician group to examine clinician agreement among a select set of Pediatric PRO-CTCAE response patterns, and the authors examined how clinical context influenced grade assignment.A total of 10 pediatric oncologists participated in round 1. Of the 101 possible patterns, 89 (88%) had high agreement. The Light weighted kappa was averaged across the 10 oncologists (Light kappa = 0.73; 95% CI, 0.66-0.81). A total of 139 clinicians participated in round 2. High clinician agreement remained for the majority of generic response patterns and the clinical context did not typically change grades but rather improved agreement.The current study provides a framework for integrating child self-reported symptom data directly into mandated AE reporting in oncology trials. Translating Pediatric PRO-CTCAE responses into clinically meaningful metrics will guide future cancer care and toxicity grading.

    View details for DOI 10.1002/cncr.32525

    View details for Web of Science ID 000562563900019

    View details for PubMedID 31553494

    View details for PubMedCentralID PMC6906242

  • Reconsidering early parental grief following the death of a child from cancer: a new framework for future research and bereavement support SUPPORTIVE CARE IN CANCER Snaman, J., Morris, S. E., Rosenberg, A. R., Holder, R., Baker, J., Wolfe, J. 2020; 28 (9): 4131-4139

    Abstract

    Parents of children that die from cancer are at increased risk of significant long-term psychosocial and physical morbidities. Less, however, is known about the experience of parents early in the grief process. Currently used frameworks and instruments used to understand and assess outcomes in parents early in the grief experience are inadequate and may serve to pathologize the normal grief response.Through review of the literature, previously conducted qualitative work, and extensive clinical experience working with bereaved parents, we developed a new framework for understanding, assessing, and studying parental grief during the first 2 years following the death of a child from cancer.Our novel longitudinal framework hypothesizes that short- and long-term psychosocial sequalae in parents following the death of a child from cancer depend not only on pre-death factors but on the support present through the disease experience and the oscillation between protective factors and risk factors in the post-death period. We further hypothesize that protective factors and risk factors may be modifiable, making them key potential targets for supportive interventions aimed at augmenting protective factors and diminishing the effect of risk factors.This is a new framework for understanding and assessing the grief experience of parents within the first 2 years of a child's death. Many questions about how best to support parents following the death of a child from cancer remain providing ample opportunities for future research and development of interventions to improve both short- and long-term outcomes in bereaved parents.

    View details for DOI 10.1007/s00520-019-05249-3

    View details for Web of Science ID 000504133600002

    View details for PubMedID 31872296

  • The Underappreciated Influence of Elisabeth Kubler-Ross on the Development of Palliative Care for Children AMERICAN JOURNAL OF BIOETHICS Sisk, B. A., Baker, J. N. 2019; 19 (12): 70-72

    View details for DOI 10.1080/15265161.2019.1674411

    View details for Web of Science ID 000497266300024

    View details for PubMedID 31746709

    View details for PubMedCentralID PMC6886676

  • Longitudinal investigation of prognostic communication: Feasibility and acceptability of studying serial disease reevaluation conversations in children with high-risk cancer CANCER Kaye, E. C., Gattas, M., Bluebond-Langner, M., Baker, J. N. 2020; 126 (1): 131-139

    Abstract

    Prospective investigation of medical dialogue is considered the gold standard in prognostic communication research. To the authors' knowledge, the achievability of collecting mixed methods data across an evolving illness trajectory for children with cancer is unknown.The objective of the current study was to investigate the feasibility and acceptability of recording sequential medical discussions at disease reevaluation time points for children with high-risk cancer. Mixed methods data (ie, surveys, interviews, checklists, and chart reviews) corresponding to each disease reevaluation conversation also were captured in real-time for 34 patients across 24 months at an academic pediatric cancer center.All eligible oncology clinicians (65 of 65 clinicians; 100%) and the majority of eligible patient/parent dyads (34 of 41 dyads; 82.9%) enrolled on the study; of 200 disease reevaluation discussions, 185 discussions (92.5%) were recorded, totaling >3300 minutes of recorded medical dialogue. Longitudinal data were captured for 31 of 34 patient/parent dyads (91.2%). The vast majority of study materials were completed, including 138 of 139 nonverbal communication checklists (99.3%), all 49 oncologist surveys (100%), 40 of 49 parent surveys (81.6%), all 34 oncologist interviews (100%), and 24 of 34 parent interviews (70.6%). Only 1 parent reported participation to be a "very" distressing experience, no parents believed that their level of distress warranted speaking with a psychosocial provider, and the majority of parents (18 of 29 parents; 62.1%) described study participation as "somewhat" or "very" useful to them.The prospective, longitudinal investigation of prognostic communication using a mixed methods approach appears to be feasible and acceptable to clinicians, patients, and families. The study of sensitive content can be accomplished without causing undue participant burden or harm, thereby enabling further advancement of communication research.

    View details for DOI 10.1002/cncr.32499

    View details for Web of Science ID 000486803500001

    View details for PubMedID 31532566

    View details for PubMedCentralID PMC6916406

  • Models of Pediatric Palliative Oncology Outpatient Care-Benefits, Challenges, and Opportunities JOURNAL OF ONCOLOGY PRACTICE Brock, K. E., Snaman, J. M., Kaye, E. C., Bower, K. A., Weaver, M. S., Baker, J. N., Wolfe, J., Ullrich, C. 2019; 15 (9): 476-+

    Abstract

    Although the bulk of current pediatric palliative care (PPC) services are concentrated in inpatient settings, the vast majority of clinical care, symptom assessment and management, decision-making, and advance care planning occurs in the outpatient and home settings. As integrated PPC/pediatric oncology becomes the standard of care, novel pediatric palliative oncology (PPO) outpatient models are emerging. The optimal PPO model is unknown and likely varies on the basis of institutional culture, resources, space, and personnel.We review five institutions' unique outpatient PPO clinical models with their respective benefits and challenges. This review offers pragmatic guidance regarding PPO clinic development, implementation, and resource allocation.Specific examples include a floating clinic model, embedded disease-specific PPC experts, embedded consultative or trigger-based supportive care clinics, and telehealth clinics.Organizations that have overcome personnel, funding, and logistical challenges can serve as role models for centers developing PPO clinic models. In the absence of a one-size-fits-all model, pediatric oncology and PPC groups can select, tailor, and implement the model that best suits their respective personnel, needs, and capacities. Emerging PPO clinics must balance the challenges and opportunities unique to their organization, with the goal of providing high-quality PPC for children with cancer and their families.

    View details for DOI 10.1200/JOP.19.00100

    View details for Web of Science ID 000486261900004

    View details for PubMedID 31322987

  • Hospice nurses request paediatric-specific educational resources and training programs to improve care for children and families in the community: Qualitative data analysis from a population-level survey PALLIATIVE MEDICINE Kaye, E. C., Applegarth, J., Gattas, M., Kiefer, A., Reynolds, J., Zalud, K., Baker, J. N. 2020; 34 (3): 403-412

    Abstract

    Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are not well known.To describe the types of paediatric-specific training received and educational content preferred by hospice nurses.Population-level dissemination of a cross-sectional survey with qualitative analysis of open-ended survey items.Nurses from 71 community-based hospice organizations across 3 states completed the survey.An open-ended response was provided by 278/551 (50.5%) survey respondents. A total of 55 respondents provided 58 descriptions of prior paediatric-specific training, including a formal 2-day course (n = 36; 65.5%), on-the-job education (n = 13, 23.6%), online training (n = 5, 9.1%), nursing school (n = 2, 3.6%) and paediatric advanced life support courses (n = 2, 3.6%). A total of 67 respondents described 74 hospice-led educational efforts, largely comprised of a 2-day course (n = 39; 54.2%) or provision of written materials (n = 11; 15.3%). A total of 189 respondents described 258 preferences for paediatric-specific training, with nearly half (n = 93; 49.2%) requesting 'any' or 'all' types of education and the remainder requesting education around medication use (n = 48; 25.4%), symptom assessment/management (n = 32; 16.9%), pain assessment/management (n = 28; 14.8), communication (n = 29; 15.3%) and psychosocial assessment/management (n = 28; 14.8).Hospice nurses self-report inadequate exposure to educational resources and programs, in conjunction with a strong desire for increased paediatric-specific training. Identification of targetable gaps should inform the development of educational resources, policies and other supportive interventions to improve delivery of care to children and families in the community.

    View details for DOI 10.1177/0269216319866576

    View details for Web of Science ID 000478540900001

    View details for PubMedID 31347446

    View details for PubMedCentralID PMC7074592

  • Speaking genomics to parents offered germline testing for cancer predisposition: Use of a 2-visit consent model CANCER Johnson, L., Sykes, A. D., Lu, Z., Valdez, J. M., Gattuso, J., Gerhardt, E., Hamilton, K., Harrison, L. W., Hines-Dowell, S. J., Jurbergs, N., McGee, R. B., Nuccio, R., Ouma, A. A., Pritchard, M., Quinn, E. A., Baker, J. N., Mandrell, B. N., Nichols, K. E. 2019; 125 (14): 2455-2464

    Abstract

    Patients with cancer are increasingly offered genomic sequencing, including germline testing for cancer predisposition or other disorders. Such testing is unfamiliar to patients and families, and clear communication is needed to introduce genomic concepts and convey risk and benefit information.Parents of children with cancer were offered the opportunity to have their children's tumor and germline examined with clinical genomic sequencing. Families were introduced to the study with a 2-visit informed consent model. Baseline genetic knowledge and self-reported literacy/numeracy were collected before a study introduction visit, during which basic concepts related to genomic sequencing were discussed. Information was reinforced during a second visit, during which informed consent was obtained and a posttest was administered.As reflected by the percentage of correct answers on the pretest and posttest assessments, this model increased genetic knowledge by 11.1% (from 77.8% to 88.9%; P < .0001) in 121 parents participating in both the study introduction and consent visits. The percentage of parents correctly identifying the meaning of somatic and germline mutations increased significantly (from 18% to 59% [somatic] and from 31% to 64% [germline]; P < .0001). Nevertheless, these concepts remained unfamiliar to one-third of the parents. No relation was identified between the change in the overall percentage of correct answers and self-reported literacy, numeracy, or demographics.The use of a 2-visit communication model improved knowledge of concepts relevant to genomic sequencing, particularly differences between somatic and germline testing; however, these areas remained confusing to many participants, and reinforcement may be necessary to achieve complete understanding.

    View details for DOI 10.1002/cncr.32071

    View details for Web of Science ID 000476763700016

    View details for PubMedID 30901077

  • Reducing Compassion Fatigue in Inpatient Pediatric Oncology Nurses ONCOLOGY NURSING FORUM Sullivan, C. E., King, A., Holdiness, J., Durrell, J., Roberts, K. K., Spencer, C., Roberts, J., Ogg, S. W., Moreland, M. W., Browne, E. K., Cartwright, C., Crabtree, V., Baker, J. N., Brown, M., Sykes, A., Mandrell, B. N. 2019; 46 (3): 338-347

    Abstract

    To develop an evidence-based compassion fatigue program and evaluate its impact on nurse-reported burnout, secondary traumatic stress, and compassion satisfaction, as well as correlated factors of resilience and coping behaviors.The quality improvement pilot program was conducted with 59 nurses on a 20-bed subspecialty pediatric oncology unit at the St. Jude Children's Research Hospital in Memphis, Tennessee.Validated measures of compassion fatigue and satisfaction (Professional Quality of Life Scale V [ProQOLV]), coping (Brief COPE), and resilience (Connor-Davidson Resilience Scale-2) were evaluated preprogram and at two, four, and six months postprogram, with resilience and coping style measured at baseline and at six months postprogram.Secondary traumatic stress scores significantly improved from baseline to four months. Select coping characteristics were significantly correlated with ProQOLV subscale scores.Ongoing organizational support and intervention can reduce compassion fatigue and foster compassion satisfaction among pediatric oncology nurses.

    View details for DOI 10.1188/19.ONF.338-347

    View details for Web of Science ID 000465373100010

    View details for PubMedID 31007264

  • Ethical issues in the care of adolescent and young adult oncology patients PEDIATRIC BLOOD & CANCER Sisk, B. A., Canavera, K., Sharma, A., Baker, J. N., Johnson, L. 2019; 66 (5): e27608

    Abstract

    The diagnosis and treatment of cancer leads to short-term and long-term challenges for every patient. This is especially true for adolescents and young adults (AYAs) with cancer who strive to gain independence, autonomy, confidence, and social status while developing into adulthood. In this article, we review prominent ethical issues in AYA oncology that are related to autonomy, shared decision-making, care refusal or abandonment, end-of-life care, truth telling, and fertility preservation. Clinicians should recognize that AYA patients develop at their own pace; the onus lies with clinicians to determine the patient's interests, values, maturity, and desire to participate in decision-making.

    View details for DOI 10.1002/pbc.27608

    View details for Web of Science ID 000461893800045

    View details for PubMedID 30623573

  • Are we meeting the informational needs of cancer patients and families? Perception of physician communication in pediatric oncology CANCER Levine, D. R., Liederbach, E., Johnson, L., Kaye, E. C., Spraker-Perlman, H., Mandrell, B., Pritchard, M., Sykes, A., Lu, Z., Wendler, D., Baker, J. N. 2019; 125 (9): 1518-1526

    Abstract

    High-quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish whether informational needs were met and identify opportunities for enhanced communication throughout cancer care.An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18 years, and their parents at 3 cancer centers between 2011 and 2015. Statistical analysis of survey items about perceived communication, related associations, and patient/parent concordance was performed.A greater percentage of participants reported "a lot" of discussion about the physical impact of cancer (patients, 58.1% [n = 75]; parents, 69.8% [n = 90]) compared with impact on quality of life (QOL) (patients, 44.2% [n = 57]; parents, 55.8% [n = 72]) or emotional impact (patients, 31.8% [n = 41]; parents, 43.4% [n = 56]). One fifth of patients (20.9% [n = 27]) reported they had no up-front discussion about the emotional impact of cancer treatment. Parents indicated a desire for increased discussion regarding impact on family life (27.9% [n = 36]), long-term QOL (27.9% [n = 36]), and daily activities (20.2% [n = 26]). Patients more frequently than parents indicated a desire for increased physician/patient discussion around the impact on daily activities (patients, 40.3% [n = 52]; parents, 21.7% [n = 28]; P < .001), long-term QOL (patients, 34.9% [n = 45]; parents, 16.3% [n = 21]; P < .001), pain management (patients, 23.3% [n = 30]; parents, 7% [n = 9]; P < .001), physical symptom management (patients, 24% [n = 31]; parents, 7.8% [n = 10]; P < .001), short-term QOL (patients, 23.3% [n = 30]; parents, 9.3% [n = 12]; P = .001), and curative potential (patients, 21.7% [n = 28]; parents, 8.5% [n = 11]; P = .002, P values calculated using McNemar's test).Oncologists may not be meeting the informational needs of many patients and some parents/caregivers. Communication could be enhanced through increased direct physician-patient communication, as well as proactive discussion of emotional symptoms and impact of cancer on QOL.

    View details for DOI 10.1002/cncr.31937

    View details for Web of Science ID 000465035900018

    View details for PubMedID 30602057

    View details for PubMedCentralID PMC6945977

  • Role of Amputation in Improving Mobility, Pain Outcomes, and Emotional and Psychological Well-Being in Children With Metastatic Osteosarcoma AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE Gil, S., Fernandez-Pineda, I., Rao, B., Neel, M. D., Baker, J. N., Wu, H., Wu, J., Anghelescu, D. L. 2019; 36 (2): 105-110

    Abstract

    Few studies have analyzed the benefit of limb amputations in children with metastatic osteosarcoma and limited life span.We studied outcomes of limb amputations in children with metastatic osteosarcoma.We performed a retrospective review of patients who underwent limb amputations (January 1995-June 2015) and died within 1 year of surgery.We studied 12 patients with osteosarcoma at a single institution.Data on mobility, pain, and emotional and psychological well-being were retrieved from medical records from 1 month before surgery to 6 months after surgery.Of the 12 patients (7 females and 5 males; median age at surgery 13 years [range, 7-20 years]) meeting study criteria, 3 patients and 9 patients had primary osteosarcoma in upper and lower limbs, respectively. Mobility improved postamputation in 8 bedridden/wheelchair-bound patients. Postamputation, emotional, and psychological well-being improved for 9 patients, 3 patients had persistent psychological and/or emotional symptoms, and no patient experienced signs of regret. Daily mean pain scores were significantly lower at 1 week (median 3 [range, 0-6]; P = .03) and 3 months (median 0 [range, 0-8]; P = .02) postsurgery than at 1 week presurgery (median 5.5 [range, 0-10]). Morphine consumption (mg/kg/d) showed a trend toward higher values at 1 week (median 0.2 [range, 0-7.6]; P = .6) and 3 months (median 0.2 [range, 0-0.5]; P = .3) postsurgery than at 1 week presurgery (median 0.1 [range, 0-0.5]).Patients undergoing limb amputations had reduced pain and improved mobility and emotional and psychological well-being. Amputations are likely to benefit children with limited life expectancy.

    View details for DOI 10.1177/1049909118791119

    View details for Web of Science ID 000454501400003

    View details for PubMedID 30058346

    View details for PubMedCentralID PMC6428046

  • Microethics of Communication-Hidden Roles of Bias and Heuristics in the Words We Choose JAMA PEDIATRICS Sisk, B. A., Baker, J. N. 2018; 172 (12): 1115-1116
  • Parent-child communication surrounding genetic testing for Li-Fraumeni syndrome: Living under the cloud of cancer PEDIATRIC BLOOD & CANCER Valdez, J. M., Walker, B., Ogg, S., Gattuso, J., Alderfer, M. A., Zelley, K., Ford, C. A., Baker, J. N., Mandrell, B. N., Nichols, K. E. 2018; 65 (11): e27350

    Abstract

    Advances in the application of genetic technologies reveal a growing number of heritable disorders associated with an increased risk to develop cancer during childhood. As genetic testing is increasingly employed in the clinical setting, it is essential to understand whether parents communicate with their children about test results and to elucidate the factors that influence the content and outcomes of these conversations.Semistructured interviews were conducted with 14 parents whose children tested positive for Li-Fraumeni syndrome (LFS). Semantic content analysis was performed on transcribed interviews, focusing on questions related to parent-child conversations about the genetic testing process and disclosure of positive test results.All parents emphasized the importance of involving children in conversations about LFS. The majority (93%) identified as being part of "cancer families" in which prior experiences with cancer created opportunities for communication. While all had spoken with their children about cancer, only seven (50%) specifically disclosed to their children that they had tested positive for LFS. The most common reason cited for nondisclosure at the time of this study was the young age of the children.Parents of children with LFS desire open conversations about genetic testing and cancer risk. These conversations are challenging yet essential to enable child understanding of genetic risk status and enhance compliance with health-promoting and cancer surveillance measures. Development of age-appropriate educational materials and novel clinical models to facilitate parent-child conversations about genetic test results and risk status for cancer are needed.

    View details for DOI 10.1002/pbc.27350

    View details for Web of Science ID 000445194700021

    View details for PubMedID 30009566

  • Importance ratings on patient-reported outcome items for survivorship care: comparison between pediatric cancer survivors, parents, and clinicians QUALITY OF LIFE RESEARCH Jones, C. M., Baker, J. N., Keesey, R. M., Eliason, R. J., Lanctot, J. Q., Clegg, J. L., Mandrell, B. N., Ness, K. K., Krull, K. R., Srivastava, D., Forrest, C. B., Hudson, M. M., Robison, L. L., Huang, I. 2018; 27 (7): 1877-1884

    Abstract

    To compare importance ratings of patient-reported outcomes (PROs) items from the viewpoints of childhood cancer survivors, parents, and clinicians for further developing short-forms to use in survivorship care.101 cancer survivors, 101 their parents, and 36 clinicians were recruited from St. Jude Children's Research Hospital. Participants were asked to select eight items that they deemed useful for clinical decision making from each of the four Patient-Reported Outcomes Measurement Information System Pediatric item banks. These item banks were pain interference (20 items), fatigue (23 items), psychological stress (19 items), and positive affect (37 items).Compared to survivors, clinicians rated more items across four domains that were statistically different than did parents (23 vs. 13 items). Clinicians rated five items in pain interference domain (ORs 2.33-6.01; p's < 0.05) and three items in fatigue domain (ORs 2.22-3.80; p's < .05) as more important but rated three items in psychological stress domain (ORs 0.14-0.42; p's < .05) and six items in positive affect domain (ORs 0.17-0.35; p's < .05) as less important than did survivors. In contrast, parents rated seven items in positive affect domain (ORs 0.25-0.47; p's < .05) as less important than did survivors.Survivors, parents, and clinicians viewed importance of PRO items for survivorship care differently. These perspectives should be used to assist the development of PROs tools.

    View details for DOI 10.1007/s11136-018-1854-z

    View details for Web of Science ID 000435128700019

    View details for PubMedID 29671249

    View details for PubMedCentralID PMC6021175

  • DECISION MAKING IN THE FACE OF INCURABLE HIGH GRADE GLIOMAS: A QUALITATIVE ANALYSIS Lanzel, A. F., Brock, K. E., Rosenberg, A. R., Baker, J. N., Brown, A., Mertens, A., Pentz, R., Wasilewski-Masker, K. OXFORD UNIV PRESS INC. 2018: 90
  • INCORPORATING BEREAVED PARENTS AS FACULTY FACILITATORS AND EDUCATORS IN TEACHING PRINCIPLES OF PALLIATIVE AND END-OF-LIFE CARE TO ONCOLOGY PROVIDERS Snaman, J., Kaye, E., Spraker-Perlman, H., Levine, D., Cunningham, M., Baker, J. WILEY. 2018
  • Predictors of Late Palliative Care Referral in Children With Cancer JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Kaye, E. C., Jerkins, J., Gushue, C. A., DeMarsh, S., Sykes, A., Lu, Z., Snaman, J. M., Blazin, L., Johnson, L., Levine, D. R., Morrison, R., Baker, J. N. 2018; 55 (6): 1550-1556

    Abstract

    Early integration of palliative care (PC) in the management of children with high-risk cancer is widely endorsed by patients, families, clinicians, and national organizations. However, optimal timing for PC consultation is not standardized, and variables that influence timing of PC integration for children with cancer remain unknown.To investigate associations between demographic, disease, treatment, and end-of-life attributes and timing of PC consultation for children with high-risk cancer enrolled on a PC service.A comprehensive standardized tool was used to abstract data from the medical records of 321 patients treated at a large academic pediatric cancer center, who died between 2011 and 2015.Gender, race, ethnicity, enrollment on a Phase I protocol, number of high-acuity hospitalizations, and receipt of cardiopulmonary resuscitation were not associated with timing of PC involvement. Patients with hematologic malignancy, those who received cancer-directed therapy during the last month of life, and those with advance directives documented one week or less before death had higher odds of late PC referral (malignancy: odds ratio [OR] 3.24, P = 0.001; therapy: OR 4.65, P < 0.001; directive: OR 4.81, P < 0.0001). Patients who received hospice services had lower odds of late PC referral <30 days before death (OR 0.31, P < 0.001).Hematologic malignancy, cancer-directed therapy at the end of life, and delayed documentation of advance directives are associated with late PC involvement in children who died of cancer. Identification of these variables affords opportunities to study targeted interventions to enhance access to earlier PC resources and services for children with high-risk cancer and their families.

    View details for DOI 10.1016/j.jpainsymman.2018.01.021

    View details for Web of Science ID 000432460600016

    View details for PubMedID 29427739

    View details for PubMedCentralID PMC6223026

  • Pediatric palliative oncology: the state of the science and art of caring for children with cancer CURRENT OPINION IN PEDIATRICS Snaman, J. M., Kaye, E. C., Baker, J. N., Wolfe, J. 2018; 30 (1): 40-48

    Abstract

    Pediatric palliative oncology (PPO) is an emerging field that integrates the principles of palliative care early into the illness trajectory of children with cancer. PPO providers work with interdisciplinary clinicians to provide optimal medical and psychosocial care to children with cancer and their families. Ongoing advances in the field of pediatric oncology, including new treatment options for progressive cancers, necessitate the early integration of palliative care tenets including holistic care, high-quality communication, and assessment and management of refractory symptoms.Research in this emerging field has expanded dramatically over the past several years. This review will focus on advancements within several key areas of the field, specifically regarding investigation of the communication needs and preferences of patients and families, exploration of educational initiatives and interventions to teach PPO principles to clinicians, study of patient-reported and parent-reported tools to better assess and manage refractory symptoms, and development of novel models to integrate palliative care within pediatric oncology.Research findings in the field of PPO, concurrent with advances in the treatment of pediatric cancer, may help improve survival and quality of life for children with cancer.

    View details for DOI 10.1097/MOP.0000000000000573

    View details for Web of Science ID 000424045000007

    View details for PubMedID 29189353

  • A pediatric brain tumor consortium phase II trial of capecitabine rapidly disintegrating tablets with concomitant radiation therapy in children with newly diagnosed diffuse intrinsic pontine gliomas PEDIATRIC BLOOD & CANCER Kilburn, L. B., Kocak, M., Baxter, P., Poussaint, T., Paulino, A. C., McIntyre, C., Lemenuel-Diot, A., Lopez-Diaz, C., Kun, L., Chintagumpala, M., Su, J. M., Broniscer, A., Baker, J. N., Hwang, E. I., Fouladi, M., Boyett, J. M., Blaney, S. M. 2018; 65 (2)

    Abstract

    We conducted a phase II study of oral capecitabine rapidly disintegrating tablets given concurrently with radiation therapy (RT) to assess progression-free survival (PFS) in children with newly diagnosed diffuse intrinsic pontine gliomas (DIPG).Children 3-17 years with newly diagnosed DIPG were eligible. Capecitabine, 650 mg/m2 /dose BID (maximum tolerated dose [MTD] in children with concurrent radiation), was administered for 9 weeks starting the first day of RT. Following a 2-week break, three courses of capecitabine, 1,250 mg/m2 /dose BID for 14 days followed by a 7-day rest, were administered. As prospectively designed, 10 evaluable patients treated at the MTD on the phase I trial were included in the phase II analyses. The design was based on comparison of the PFS distribution to a contemporary historical control (n = 140) with 90% power to detect a 15% absolute improvement in the 1-year PFS with a type-1 error rate, α = 0.10.Forty-four patients were evaluable for the phase II objectives. Capecitabine and RT was well tolerated with low-grade palmar plantar erythrodyesthesia, increased alanine aminotransferase, cytopenias, and vomiting the most commonly reported toxicities. Findings were significant for earlier progression with 1-year PFS of 7.21% (SE = 3.47%) in the capecitabine-treated cohort versus 15.59% (SE = 3.05%) in the historical control (P = 0.007), but there was no difference for overall survival (OS) distributions (P = 0.30). Tumor enhancement at diagnosis was associated with shorter PFS and OS. Capecitabine was rapidly absorbed and converted to its metabolites.Capecitabine did not improve the outcome for children with newly diagnosed DIPG.

    View details for DOI 10.1002/pbc.26832

    View details for Web of Science ID 000418416400036

    View details for PubMedID 29090526

    View details for PubMedCentralID PMC5774861

  • Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review QUALITY OF LIFE RESEARCH Pinheiro, L. C., McFatrich, M., Lucas, N., Walker, J. S., Withycombe, J. S., Hinds, P. S., Sung, L., Tomlinson, D., Freyer, D. R., Mack, J. W., Baker, J. N., Reeve, B. B. 2018; 27 (2): 291-319

    Abstract

    Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment.A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility.There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatric oncology studies.This systematic review aids pediatric oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatric oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.

    View details for DOI 10.1007/s11136-017-1692-4

    View details for Web of Science ID 000425778200002

    View details for PubMedID 28879501

    View details for PubMedCentralID PMC5823735

  • Pediatric Palliative Oncology Patients: Demographics, Treatment and End-of-Life Experiences of a Vulnerable and Understudied Population Kaye, E., Gushue, C., Demarsh, S., Jerkins, J., Snaman, J., Blazin, L., Johnson, L., Levine, D. R., Morrison, R., Baker, J. ELSEVIER SCIENCE INC. 2018: 580-581
  • Incorporating Bereaved Parents as Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care Snaman, J., Kaye, E., Levine, D., Clark, L., Wilcox, R., Cunningham, M., Baker, J. ELSEVIER SCIENCE INC. 2018: 619
  • Partnering with Payers to Meet the Needs of Pediatric Palliative Care Patients Cunningham, M., Williamson, S., Baker, J., Pennington, K., Young, A., Bolick, R., Norton, C. ELSEVIER SCIENCE INC. 2018: 627-628
  • Treatment intensity and symptom burden in hospitalized adolescent and young adult hematopoietic cell transplant recipients at the end of life Snaman, J. M., Talleur, A. C., Lu, J., Levine, D. R., Kaye, E. C., Sykes, A., Lu, Z., Triplett, B. M., Baker, J. N. NATURE PUBLISHING GROUP. 2018: 84-90

    Abstract

    Adolescent and young adult (AYA) oncology patients experience many physical and psychological symptoms at the end of life (EOL); however, data on these experiences for AYA patients who have undergone hematopoietic cell transplantation (HCT) remains sparse. We sought to investigate the characteristics of AYA patients aged 15-25 years who received allogeneic HCT and subsequently died while inpatient at our institution between the years 2008 and 2014. A standardized data extraction tool was used to collect information about patient demographics, treatment and symptoms. We found that during this time frame, 34 AYA patients had received HCT and died while inpatient at our institution, 23 (68%) of whom died because of treatment-related complications. Compared with non-HCT AYA oncology patients (n=35), patients who received HCT (n=34) were more likely to have died in the intensive care unit (71% vs 23%, P<0 .0001) and to have received mechanical ventilation (68% vs 17%, P<0.0001) or hemodialysis (53% vs 0%, P<0.0001) in the last 30 days of life. These findings demonstrate that AYA patients who receive allogeneic HCT receive intensive EOL treatment, suggesting that these patients may benefit from early integration of expert interdisciplinary services to prospectively assess and manage distressing symptoms.

    View details for DOI 10.1038/bmt.2017.187

    View details for Web of Science ID 000424356500014

    View details for PubMedID 29131155

    View details for PubMedCentralID PMC5798862

  • The bereavement experience of adolescents and early young adults with cancer: Peer and parental loss due to death is associated with increased risk of adverse psychological outcomes PLOS ONE Johnson, L., Torres, C., Sykes, A., Gibson, D. V., Baker, J. N. 2017; 12 (8): e0181024

    Abstract

    Adolescents commonly experience loss due to death, and perceived closeness to the deceased can often increase the intensity of bereavement. Adolescents and early young adult (AeYA) oncology patients may recall previous losses or experience new losses, possibly of other children with cancer, while coping with their own increased risk of mortality. The bereavement experiences of AeYA patients are not well described in the literature.This analysis of bereavement sought to describe the prevalence and types of losses, the support following a death, and the impact of loss on AeYAs aged 13-21 years with malignant disease (or a hematologic disorder requiring allogeneic transplant). Participants were receiving active oncologic therapy or had completed therapy within the past 3 years. Participants completed a bereavement questionnaire and inventories on depression, anxiety, and somatization. The cross-sectional study enrolled 153 AeYAs (95% participation), most (88%) of whom had experienced a loss due to death. The most commonly reported losses were of a grandparent (58%) or friend (37%). Peer deaths were predominantly cancer related (66%). Many participants (39%) self-identified a loss as "very significant." As loss significance increased, AeYAs were more likely to report that it had changed their life "a lot/enormously" (P<0.0001), that they were grieving "slowly or never got over it" (P<0.0001), and that they felt a need for more professional help (P = 0.026). Peer loss was associated with increased risk of adverse psychological outcomes (P = 0.029), as was parental loss (P = 0.018).Most AeYAs with serious illness experience the grief process as slow or ongoing. Peer or parental loss was associated with increased risk of negative mental health outcomes. Given the high prevalence of peer loss, screening for bereavement problems is warranted in AeYAs with cancer, and further research on grief and bereavement is needed in AeYAs with serious illness.

    View details for DOI 10.1371/journal.pone.0181024

    View details for Web of Science ID 000408355800002

    View details for PubMedID 28832654

    View details for PubMedCentralID PMC5568383

  • Palliative Sedation With Propofol for an Adolescent With a DNR Order PEDIATRICS Johnson, L., Frader, J., Wolfe, J., Baker, J. N., Anghelescu, D. L., Lantos, J. D. 2017; 140 (2)

    Abstract

    Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until the end. Sometimes, however, the only way to relieve pain is to sedate patients until they are unconscious. This method has been called palliative sedation therapy. Palliative sedation therapy is controversial because it can be misunderstood as euthanasia. We present a case in which an adolescent who is dying of leukemia has intractable pain. Experts in oncology, ethics, pain management, and palliative care discuss the trade-offs associated with different treatment strategies.

    View details for DOI 10.1542/peds.2017-0487

    View details for Web of Science ID 000406659900032

    View details for PubMedID 28679640

  • NCCN Guidelines (R) Insights Palliative Care, Version 2.2017 Featured Updates to the NCCN Guidelines JOURNAL OF THE NATIONAL COMPREHENSIVE CANCER NETWORK Dans, M., Smith, T., Back, A., Baker, J. N., Bauman, J. R., Beck, A. C., Block, S., Campbell, T., Case, A. A., Dalal, S., Edwards, H., Fitch, T. R., Kapo, J., Kutner, J. S., Kvale, E., Miller, C., Misra, S., Mitchell, W., Portman, D. G., Spiegel, D., Sutton, L., Szmuilowicz, E., Temel, J., Tickoo, R., Urba, S. G., Weinstein, E., Zachariah, F., Bergman, M., Scavone, J. L. 2017; 15 (8): 989–97

    Abstract

    The NCCN Guidelines for Palliative Care provide interdisciplinary recommendations on palliative care for patients with cancer. These NCCN Guidelines Insights summarize and provide context for the updated guidelines recommendations regarding hospice and end-of-life (EOL) care. Updates for 2017 include revisions to and restructuring of the algorithms that address important EOL concerns. These recommendations were revised to provide clearer guidance for oncologists as they care for patients with cancer who are approaching the transition to EOL care. Recommendations for interventions and reassessment based on estimated life expectancy were streamlined and reprioritized to promote hospice referrals and improved EOL care.

    View details for DOI 10.6004/jnccn.2017.0132

    View details for Web of Science ID 000407058700006

    View details for PubMedID 28784860

  • Integrating Next-Generation Sequencing Into Pediatric Oncology Practice: An Assessment of Physician Confidence and Understanding of Clinical Genomics CANCER Johnson, L., Valdez, J. M., Quinn, E. A., Sykes, A. D., McGee, R. B., Nuccio, R., Hines-Dowell, S. J., Baker, J. N., Kesserwan, C., Nichols, K. E., Mandrell, B. N. 2017; 123 (12): 2352-2359

    Abstract

    The incorporation of genomic testing to identify targetable somatic alterations and predisposing germline mutations into the clinical setting is becoming increasingly more common. Despite its potential usefulness, to the authors' knowledge physician confidence with regard to understanding and applying genomic testing remains unclear, particularly within the realm of pediatric oncology.Before initiating an institutional feasibility study regarding the integration of clinical genomic testing, the authors surveyed pediatric oncologists regarding their confidence around understanding of genomic testing, perceived usefulness of test results, preferences around the disclosure of germline test results, and possible risks and benefits of testing.Among survey respondents (52 of 88 contacted; response rate of 59%), only a minority were confident in interpreting, using, and discussing somatic (35%) or germline (27%) genomic test results. Providers who were confident in interpreting somatic results were significantly more likely to anticipate using the results to plan the treatment of patients with relapsed or refractory cancers (P = .009). Similarly, providers who reported confidence in interpreting germline results were significantly more likely to discuss and use these results as part of clinical care (P<.0001). The majority of physicians (93%), regardless of their level of confidence, wanted to speak to a genetic counselor before disclosing germline test results.Among physicians at a comprehensive pediatric cancer center, confidence in the interpretation, use, and discussion of oncology-based genomic test results appears to be low, both in terms of somatic and germline testing. To optimize the integration of genomic sequencing into cancer care, methods must be developed to improve basic competencies around cancer-based genomic testing. Given the complexities surrounding variant interpretation and genotype-phenotype relationships, interdisciplinary collaborations are warranted. Cancer 2017;123:2352-2359. © 2017 American Cancer Society.

    View details for DOI 10.1002/cncr.30581

    View details for Web of Science ID 000402846300023

    View details for PubMedID 28192596

    View details for PubMedCentralID PMC5710798

  • Development of depression in survivors of childhood and adolescent cancer: a multi-level life course conceptual framework SUPPORTIVE CARE IN CANCER Kaye, E. C., Brinkman, T. M., Baker, J. N. 2017; 25 (6): 2009-2017

    Abstract

    As therapeutic and supportive care interventions become increasingly effective, growing numbers of childhood and adolescent cancer survivors face a myriad of physical and psychological sequelae secondary to their disease and treatment. Mental health issues, in particular, present a significant problem in this unique patient population, with depression affecting a sizable number of childhood and adolescent cancer survivors. Multiple key determinants impact a survivor's risk of developing depression, with variables traversing across biologic, individual, family, community, and global levels, as well as spanning throughout the life course of human development from the preconception and prenatal periods to adulthood. A multi-level life course conceptual model offers a valuable framework to identify and organize the diverse variables that modulate the risk of developing depression in survivors of childhood and adolescent cancer. This review describes the first multi-level life course perspective applied to development of depression in childhood and adolescent cancer survivors. This conceptual framework may be used to guide the investigation of mental health interventions for SCACs to ensure that key determinants of depression occurrence are adequately addressed across various levels and throughout the life trajectory.

    View details for DOI 10.1007/s00520-017-3659-y

    View details for Web of Science ID 000400081200031

    View details for PubMedID 28281048

  • Families are not the Barrier: Evaluating Attitudes Toward Early Integration of Palliative Care in Pediatric Hematopoietic Stem Cell Transplant Levine, D., Mandrell, B., Sykes, A., Baker, J. WILEY. 2017: S101
  • End of Life Characteristics and Symptoms of Hospitalized Adolescent and Young Adult Patients that have Received Hematopoietic Cell Transplant Talleur, A. C., Snaman, J. M., Sykes, A., Lu, Z., Levine, D., Triplett, B. M., Baker, J. N. WILEY. 2017: S101
  • Productivity in Pediatric Palliative Care: Measuring and Monitoring an Elusive Metric JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Kaye, E. C., Abramson, Z. R., Snaman, J. M., Friebert, S. E., Baker, J. N. 2017; 53 (5): 952-961

    Abstract

    Workforce productivity is poorly defined in health care. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable.To review the literature regarding the definition and measurement of productivity in PPC; to identify barriers to productivity within traditional PPC models; and to recommend novel metrics to study productivity as a component of quality care in PPC.PubMed® and Cochrane Database of Systematic Reviews searches for scholarly literature were performed using key words (pediatric palliative care, palliative care, team, workforce, workflow, productivity, algorithm, quality care, quality improvement, quality metric, inpatient, hospital, consultation, model) for articles published between 2000 and 2016. Organizational searches of Center to Advance Palliative Care, National Hospice and Palliative Care Organization, National Association for Home Care & Hospice, American Academy of Hospice and Palliative Medicine, Hospice and Palliative Nurses Association, National Quality Forum, and National Consensus Project for Quality Palliative Care were also performed. Additional semistructured interviews were conducted with directors from seven prominent PPC programs across the U.S. to review standard operating procedures for PPC team workflow and productivity.Little consensus exists in the PPC field regarding optimal ways to define, measure, and analyze provider and program productivity. Barriers to accurate monitoring of productivity include difficulties with identification, measurement, and interpretation of metrics applicable to an interdisciplinary care paradigm. In the context of inefficiencies inherent to traditional consultation models, novel productivity metrics are proposed.Further research is needed to determine optimal metrics for monitoring productivity within PPC teams. Innovative approaches should be studied with the goal of improving efficiency of care without compromising value.

    View details for DOI 10.1016/j.jpainsymman.2016.12.326

    View details for Web of Science ID 000402485900016

    View details for PubMedID 28062335

  • Ethical considerations surrounding germline next-generation sequencing of children with cancer EXPERT REVIEW OF MOLECULAR DIAGNOSTICS Johnson, L., Hamilton, K. V., Valdez, J. M., Knapp, E., Baker, J. N., Nichols, K. E. 2017; 17 (5): 523-534

    Abstract

    The advent of next-generation sequencing (NGS) has introduced an exciting new era in biomedical research. NGS forms the foundation of current genetic testing approaches, including targeted gene panel testing, as well as more comprehensive whole-exome and whole-genome sequencing. Together, these approaches promise to provide critical insights into the understanding of health and disease. However, with NGS testing come many ethical questions and concerns, particularly when testing involves children. These concerns are especially relevant for children with cancer, where the testing of tumor and germline tissues is increasingly being incorporated into clinical care. Areas covered: In this manuscript, we explore the key ethical considerations related to conducting germline NGS testing in pediatric oncology, focusing on the four main principles of beneficence, non-maleficence, autonomy and justice. Expert commentary: The ethical issues surrounding germline NGS testing are complex and result in part from our limited understanding of the medical relevance of many of the results obtained and poor knowledge of the impacts of testing, both beneficial and detrimental, on patients and their families. In this article we discuss the risks and benefits of germline NGS testing and the arguments for and against such testing in children with cancer.

    View details for DOI 10.1080/14737159.2017.1316665

    View details for Web of Science ID 000399795200010

    View details for PubMedID 28399664

  • The role of the pediatric anesthesiologist in relieving suffering at the end of life: when is palliative sedation appropriate in pediatrics? PEDIATRIC ANESTHESIA Anghelescu, D. L., Knapp, E., Johnson, L., Baker, J. N. 2017; 27 (4): 443-444

    View details for DOI 10.1111/pan.13103

    View details for Web of Science ID 000399006400016

    View details for PubMedID 28300355

  • Cognitive Interview-Based Validation of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events in Adolescents with Cancer JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Reeve, B. B., McFatrich, M., Pinheiro, L. C., Freyer, D. R., Basch, E. M., Baker, J. N., Withycombe, J. S., Sung, L., Mack, J. W., Waldron, M. K., Mowbray, C., Palma, D., Hinds, P. S. 2017; 53 (4): 759-766

    Abstract

    The National Cancer Institute created the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) to allow direct input on symptomatic adverse events (AEs) from adult patients in oncology trials.This study sought to determine the youngest age to complete the PRO-CTCAE, evaluated comprehension of PRO-CTCAE among adolescents, tested new items not currently in PRO-CTCAE, and tested a parent-proxy version.From seven pediatric cancer hospitals, 51 adolescents (13-20 years) receiving cancer treatment participated, along with 40 parent proxies. We evaluated 55 AEs from the PRO-CTCAE library (97 questions) and seven new AEs not in PRO-CTCAE that assess symptom frequency, severity, interference, or presence. Questions were distributed across three forms to reduce burden. Cognitive interviews with retrospective probing were completed in age groups of 13-15 and 16-20 year olds. Proxies were interviewed independently.In general, the 16-20 year olds and the parent proxies were able to understand and complete the PRO-CTCAE and newly designed AE questions. Five PRO-CTCAE terms (bloating of the abdomen, anxiety, flashing lights in front of your eyes, hot flashes, and bed sores) and the wording of the questions about AE severity were challenging for a few adolescents and proxies. The 13-15 year olds had greater challenges completing the PRO-CTCAE.This study extends use of the adult PRO-CTCAE for adolescents as young as 16 years and proposes new questions for seven new symptomatic AEs and a parent-proxy version of PRO-CTCAE. Additional testing of the new questions and alternative language for more challenging PRO-CTCAE items is recommended in adults.

    View details for DOI 10.1016/j.jpainsymman.2016.11.006

    View details for Web of Science ID 000402485200014

    View details for PubMedID 28062347

    View details for PubMedCentralID PMC5374011

  • Eliciting the child's voice in adverse event reporting in oncology trials: Cognitive interview findings from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events initiative PEDIATRIC BLOOD & CANCER Reeve, B. B., McFatrich, M., Pinheiro, L. C., Weaver, M. S., Sung, L., Withycombe, J. S., Baker, J. N., Mack, J., Waldron, M. K., Gibson, D., Tomlinson, D., Freyer, D. R., Mowbray, C., Jacobs, S., Palma, D., Martens, C. E., Gold, S. H., Jackson, K. D., Hinds, P. S. 2017; 64 (3)

    Abstract

    Adverse event (AE) reporting in oncology trials is required, but current practice does not directly integrate the child's voice. The Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is being developed to assess symptomatic AEs via child/adolescent self-report or proxy-report. This qualitative study evaluates the child's/adolescent's understanding and ability to provide valid responses to the PRO-CTCAE to inform questionnaire refinements and confirm content validity.From seven pediatric research hospitals, children/adolescents ages 7-15 years who were diagnosed with cancer and receiving treatment were eligible, along with their parent-proxies. The Pediatric PRO-CTCAE includes 130 questions that assess 62 symptomatic AEs capturing symptom frequency, severity, interference, or presence. Cognitive interviews with retrospective probing were completed with children in the age groups of 7-8, 9-12, and 13-15 years. The children/adolescents and proxies were interviewed independently.Two rounds of interviews involved 81 children and adolescents and 74 parent-proxies. Fifteen of the 62 AE terms were revised after Round 1, including refinements to the questions assessing symptom severity. Most participants rated the PRO-CTCAE AE items as "very easy" or "somewhat easy" and were able to read, understand, and provide valid responses to questions. A few AE items assessing rare events were challenging to understand.The Pediatric and Proxy PRO-CTCAE performed well among children and adolescents and their proxies, supporting its content validity. Data from PRO-CTCAE may improve symptomatic AE reporting in clinical trials and enhance the quality of care that children receive.

    View details for DOI 10.1002/pbc.26261

    View details for Web of Science ID 000397225000010

    View details for PubMedID 27650708

    View details for PubMedCentralID PMC5301979

  • Palliative Care Involvement Is Associated with Less Intensive End-of-Life Care Characteristics in Adolescent and Young Adult Oncology Patients (SA527D) Snaman, J., Lu, J., Kaye, E., Baker, J. ELSEVIER SCIENCE INC. 2017: 409
  • Going straight to the source: A pilot study of bereaved parent-facilitated communication training for pediatric subspecialty fellows PEDIATRIC BLOOD & CANCER Snaman, J. M., Kaye, E. C., Cunningham, M. J., Sykes, A., Levine, D. R., Mahoney, D., Baker, J. N. 2017; 64 (1): 156-162

    Abstract

    Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education, particularly in the provision of "bad news." To our knowledge, no programs currently use bereaved parent educators to facilitate communication training for pediatric subspecialty trainees.The authors designed and implemented a pilot communication training seminar in which bereaved parent educators and faculty facilitators led small groups in interactive, role-play scenarios. Surveys incorporating a retrospective preprogram assessment item to account for response-shift bias were used to assess short- and long-term changes in trainee comfort with delivering "bad news."Fifteen pediatric fellowship trainees participated in the communication seminar; complete data were available for 12 participants. After accounting for response-shift bias, participants reported significant improvement in overall preparedness, breaking bad news to a patient and family, and including the adolescent or young adult patient in conversations. Additionally, participants reported a significant improvement in their ability to address a patient and family's need for information, emotional suffering at the end of life (EOL), if and when a patient should be included in the conversation, and EOL care decisions. The participant's self-perceived improvement in comfort and preparedness persisted over time.Communication training for pediatric subspecialty trainees using bereaved parent educators is feasible and effective. Both medical trainee and bereaved parent participants benefited from involvement in this pilot study. Further iterations of this training will be modified to assess objective measures of improvement in trainees' communication skills.

    View details for DOI 10.1002/pbc.26089

    View details for Web of Science ID 000389051100026

    View details for PubMedID 27605076

  • Prompting discussions about emotions with pediatric oncology patients during cognitive interviews McFatrich, M., Reeve, B. B., Baker, J. N., Freyer, D. R., Mack, J. W., Pinheiro, L. C., Sung, L., Weaver, M., Withycombe, J. S., Hinds, P. S. SPRINGER. 2016: 77-78
  • How response shift impacts minimally important differences in quality of life by self- and proxy-reports: a journey of pediatric cancer treatment Huang, I., Baker, J. N., Mandrell, B. SPRINGER. 2016: 15
  • Children with minimal chance for cure: parent proxy of the child's health-related quality of life and the effect on parental physical and mental health during treatment JOURNAL OF NEURO-ONCOLOGY Mandrell, B. N., Baker, J., Levine, D., Gattuso, J., West, N., Sykes, A., Gajjar, A., Broniscer, A. 2016; 129 (2): 373-381

    Abstract

    To assess health-related quality of life (HRQOL) from the time of diagnosis until disease progression in a cohort of children with diffuse intrinsic pontine glioma (DIPG). The assessment was collected from the perspectives of the child and their parents and evaluated the effect of the child's HRQOL on their parents' physical and mental well-being, thus providing insight into the optimal timing of palliative consultation, including anticipatory grief and bereavement services. This longitudinal study assessed 25 parents and their children, ages 2-17 years of age with DIPG across five time-points, baseline and weeks 2, 4, 6, 16, 24. Assessments included the PedsQL 4.0 Core Scales, PedsQL 3.0 Brain Tumor Scale, and Short-Form 36. HRQOL instruments were completed by the child (age ≥5 years) and parent-proxy (ages 2-17 years), with the parent completing the SF-36. Children's reports and parents' proxy of their child's HRQOL indicated poor physical functioning and increased anxiety at the initiation of therapy. A trending improvement in the children's HRQOL was reported by children and parents from baseline to week 6, with a decline at week 16. The childs' parent proxy reported cognitive problems, procedural anxiety and lower overall brain tumor HRQOL were assoicated with poorer self-reported parental mental status. Palliative care consultation should be initiated at the time of diagnosis and is supported in the high physical and emotional symptom burden reported by our patients, with heightened involvement initiated at 16 weeks. Prompt palliative care involvement, mitigating anxiety associated with clinic visits and procedures, management of brain tumor specific symptoms, advanced care planning, anticipatory grief and bereavement services, and care coordination may maximize HRQOL for patients and ensure positive long-term outcomes for parents of children with DIPG.

    View details for DOI 10.1007/s11060-016-2187-9

    View details for Web of Science ID 000382087400020

    View details for PubMedID 27344555

    View details for PubMedCentralID PMC5673074

  • Parental Grief Following the Death of a Child from Cancer: The Ongoing Odyssey PEDIATRIC BLOOD & CANCER Snaman, J. M., Kaye, E. C., Torres, C., Gibson, D., Baker, J. N. 2016; 63 (9): 1594-1602

    Abstract

    The death of a child is a devastating event that results in profound grief and significant psychosocial and physical morbidities in parents. The parental grief journey is a complex phenomenon necessitating the utilization of newer models of bereavement with a focus on relationships and exploration of parents' perceived meanings of the experience.To further characterize the grief journey of parents whose child died from cancer in order to better identify parents who can benefit from additional bereavement support and design strategies to improve bereavement services for these parents.We conducted focus group sessions with 11 bereaved parents. The parents were given two prompts to describe their grief journey before and after their child's death, and their responses in a narrative form were audio-recorded. The responses were coded and studied independently by semantic content analysis.Collation and analysis of the coded responses to both prompts results in the emergence of four concepts from the parental narratives: (1) description of the grief trajectory and evolution of grief over time, (2) mechanisms of parental coping throughout the grief journey, (3) factors that exacerbate parental grief, and (4) sources of parental support throughout the grief journey.The narratives highlighted that parents whose child died of cancer experience a unique and evolving form of grief and they wish to continue their bond with the deceased child. We recommend that healthcare providers and institutions incorporate support systems into a comprehensive bereavement program for families of children who die from cancer.

    View details for DOI 10.1002/pbc.26046

    View details for Web of Science ID 000380109900015

    View details for PubMedID 27187020

  • Bad News Deserves Better Communication: A Customizable Curriculum for Teaching Learners to Share Life-Altering Information in Pediatrics. MedEdPORTAL : the journal of teaching and learning resources Wolfe, A. D., Denniston, S. F., Baker, J., Catrine, K., Hoover-Regan, M. 2016; 12: 10438

    Abstract

    INTRODUCTION: Learners have repeatedly expressed a desire for more structured training in communicating with families, especially when sharing life-altering information and breaking bad news. Concurrently, parents have indicated that pediatricians could conduct difficult conversations with greater skill. Based on local needs assessments and available pediatric literature, this guide presents didactic materials and a workshop-style, case-based, longitudinal approach for teaching communication skills to learners in pediatrics.METHODS: The customizable guide can be implemented as a 1-hour didactic presentation, a 1- to 3-hour workshop, or an integrated longitudinal curriculum. Unlike other available resources for breaking bad news, this guide is specifically designed for pediatrics and uses evidence-based communication guidelines developed for pediatric settings. The guidelines are modified from the adult-centered SPIKES (setting, perception, involvement, knowledge, emotions, summary) approach. The material was created by clinicians, educators, and parents of pediatric patients. In addition to video-based didactic materials and pediatric case scenarios, the guide includes materials for assessment, evaluation, and personal reflection.RESULTS: The modified SPIKES approach and didactic portion of this resource were validated as an initial training tool, yielding significant improvements in self-efficacy of pediatric providers and learners. Evaluations of the role-playing components provided by pediatric residents and fellows have been positive for the format and value of the learning experience. Participants reported a particular benefit from the inclusion of parent perspectives.DISCUSSION: Without a formal communication curriculum, learners must rely on chance observation of life-altering conversations during clinical rotations. This guide provides pediatric educators with structured, evidence-based materials to teach advanced communication skills.

    View details for DOI 10.15766/mep_2374-8265.10438

    View details for PubMedID 31139729

  • "Being a good patient" during times of illness as defined by adolescent patients with cancer CANCER Weaver, M. S., Baker, J. N., Gattuso, J. S., Gibson, D. V., Hinds, P. S. 2016; 122 (14): 2224-2233

    Abstract

    Adolescents with cancer cite the opinions of others and expected impact on others as formative for their care preferences and decisions. The current study first explores how the concepts of being a good child and being a good patient may exist for adolescents with cancer and determines how adolescents describe and apply these concepts. The study then investigates parental actions and clinician behaviors perceived by adolescents with cancer as supportive in helping them to achieve their defined good child and good patient roles.In a prospective study conducted at 2 cancer treatment centers over the course of 10 months, 40 adolescents with cancer responded to 10 open-ended questions. Semantic content analysis was used. An adolescent focus group validated the findings.Of the 40 participants in the current study, 39 confirmed 1 or both concepts; the good patient responses yielded 112 codes and 5 themes: cooperation, adherence, communication, self-care, and care for others. The good child responses revealed 88 codes and 7 themes: cooperation and respect, positivity, lightening others' burdens, taking treatment seriously, recognizing mutual impact, communication, and acknowledging mortality. Of 589 interview phrases, 184 (31%) depicted themes of care for others and 58 (10%) spoke of tolerating treatment in the hope of a better future for one's self or others. The benefits and challenges of living up to these definitions were discussed.Clinicians may consider asking adolescents about their "good child" and "good patient" descriptions to learn more about the perceived roles carried by adolescents with cancer and how these roles may impact their decision making, medication adherence, and social interactions. Cancer 2016;122:2224-33. © 2016 American Cancer Society.

    View details for DOI 10.1002/cncr.30033

    View details for Web of Science ID 000379894000015

    View details for PubMedID 27141846

  • Integrating Palliative Care in Pediatric Oncology: Evidence for an Evolving Paradigm for Comprehensive Cancer Care JOURNAL OF THE NATIONAL COMPREHENSIVE CANCER NETWORK Levine, D. R., Johnson, L., Snyder, A., Wiser, R. K., Gibson, D., Kane, J. R., Baker, J. N. 2016; 14 (6): 741-748

    Abstract

    The demonstrated benefit of integrating palliative care (PC) into cancer treatment has triggered an increased need for PC services. The trajectory of integrating PC in comprehensive cancer centers, particularly pediatric centers, is unknown. We describe our 8-year experience of initiating and establishing PC with the Quality of Life Service (QoLS) at St. Jude Children's Research Hospital.We retrospectively reviewed records of patients seen by the QoLS (n=615) from March 2007 to December 2014. Variables analyzed for each year, using descriptive statistics, included diagnostic groups, QoLS encounters, goals of care, duration of survival, and location of death.Total QoLS patient encounters increased from 58 (2007) to 1,297 (2014), new consults increased from 17 (2007) to 115 (2014), and mean encounters per patient increased from 5.06 (2007) to 16.11 (2014). Goal of care at initial consultation shifted from primarily comfort to an increasing goal of cure. The median number of days from initial consult to death increased from 52 days (2008) to 223 days (2014). A trend toward increased outpatient location of death was noted with 42% outpatient deaths in 2007, increasing to a majority in each subsequent year (range, 51%-74%). Hospital-wide, patients receiving PC services before death increased from approximately 50% to nearly 100%.Since its inception, the QoLS experienced a dramatic increase in referrals and encounters per patient, increased use by all clinical services, a trend toward earlier consultation and longer term follow-up, increasing outpatient location of death, and near-universal PC involvement at the end-of-life. The successful integration of PC in a comprehensive cancer center, and the resulting potential for improved care provision over time, can serve as a model for other programs on a broad scale.

    View details for DOI 10.6004/jnccn.2016.0076

    View details for Web of Science ID 000377690100007

    View details for PubMedID 27283167

    View details for PubMedCentralID PMC5357562

  • Pediatric Oncology: Managing Pain at the End of Life PEDIATRIC DRUGS Snaman, J. M., Baker, J. N., Ehrentraut, J. H., Anghelescu, D. L. 2016; 18 (3): 161-180

    Abstract

    Pain is a common and highly distressing symptom in pediatric patients with advanced malignancies. Prompt recognition, assessment, and treatment of pain are necessary, especially at the end of life. Opioid medications remain the mainstay of treatment of malignant pain in children at the end of life and the amount of opioids required for adequate pain control in patients is highly variable. Nonpharmacological approaches including behavioral and physical approaches in addition to non-opioid pain medications should be used when possible to augment pain control. Identification and treatment of any underlying pathology is important and use of adjuvant medications based on pathophysiology and source of pain should be considered. In cases where adequate pain control is not achieved through these multiple modalities, an interdisciplinary approach including potential interventional techniques and alternative treatments is required. This multimodal approach to pain management is best provided by interdisciplinary teams, as these teams can best address the complex causes of pain and associated distress that occurs in patients and within families.

    View details for DOI 10.1007/s40272-016-0168-2

    View details for Web of Science ID 000376503400002

    View details for PubMedID 26951239

  • Early palliative care for children with cancer: A multi institutional survey study of pediatric oncology patients and parents. Levine, D. R., Baker, J. N. AMER SOC CLINICAL ONCOLOGY. 2016
  • Integrating palliative care in pediatric oncology: An evolving paradigm for comprehensive cancer care. Levine, D. R., Baker, J. N. AMER SOC CLINICAL ONCOLOGY. 2016
  • Methadone prolongs cardiac conduction in young patients with cancer-related pain. Journal of opioid management Anghelescu, D. L., Patel, R. M., Mahoney, D. P., Trujillo, L., Faughnan, L. G., Steen, B. D., Baker, J. N., Pei, D. 2016; 12 (2): 131-8

    Abstract

    OBJECTIVE: Methadone prolongs cardiac conduction, from mild corrected QT (QTc) prolongation to torsades de pointes and ventricular fibrillation, in adults. However, methadone use for pain and its effects on cardiac conduction have not been investigated in pediatric populations.METHODS: A retrospective review of QTc intervals in patients receiving methadone analgesia was conducted. Medical records from a 4-year period (September 2006 to October 2010) at a pediatric oncology institution were reviewed, and correlations were tested between cardiac conduction and methadone dosage and duration of therapy, electrolyte levels, renal and hepatic dysfunction, and concurrent medications.RESULTS: Of the 61 patients who received methadone, 37 met our inclusion criteria and underwent 137 electrocardiograms (ECGs). During methadone treatment, the mean QTc was longer than that at baseline (446.5 vs 437.55 ms). The mean methadone dose was 27.0±24.3 mg/d (range, 5-125 mg/d; median, 20 mg/d) or 0.47±0.45 mg/kg per day (range, 0.05-2.25 mg/kg per day; median, 0.37 mg/kg per day), and the mean duration of therapy was 49 days. The authors identified a correlation between automated and manual ECG readings by two cardiologists (Pearson r=0.649; p<0.0001), but the authors found no correlations between methadone dose or duration and concurrent QTc-prolonging medications, sex, age, electrolyte abnormalities, or renal or hepatic dysfunction.CONCLUSION: At a clinically effective analgesic dose, methadone dosage and duration were not correlated with QTc prolongation, even in the presence of other risk factors, suggesting that methadone use may be safe in pediatric populations. The correlation between automated and manual ECG readings suggests that automated ECG readings are reliable for monitoring cardiac conductivity during the reported methadone-dosage regimens.

    View details for DOI 10.5055/jom.2016.0325

    View details for PubMedID 27194198

  • Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution JOURNAL OF PALLIATIVE MEDICINE Snaman, J. M., Torres, C., Duffy, B., Levine, D. R., Gibson, D. V., Baker, J. N. 2016; 19 (3): 326-332

    Abstract

    The interaction of health care providers and hospital staff with patients and families at the end of life affects the parental grief experience. Both verbal and nonverbal communication are key components of this interaction.The study objective was to explore the communication between hospital staff members and patients and families at the time of patients' health decline near the end of life.Twelve bereaved parents participated in a focus group. Semantic content analysis was used to analyze the transcript.Parents' responses to the prompt about typical ways the medical team communicated yielded 109 codes, which were grouped into 12 themes. The most common themes were "patient inclusion" and "explanation of medical plan," both used in 17% of responses. Responses to the prompt about positive and negative aspects of communication generated 208 codes, yielding 15 different themes. The most common theme about positive communication was the "strong relationship between family and staff." The theme "variations in care with a negative impact" was used most frequently in describing negative communication.This study helps to identify techniques that should be used by clinicians as they work with children with cancer and their families, particularly including patients in treatment decisions, ongoing relationship building, communicating with caring and empathy, using an interdisciplinary team for additional support, and pairing bad news with a plan of action.

    View details for DOI 10.1089/jpm.2015.0253

    View details for Web of Science ID 000371355800017

    View details for PubMedID 26862782

  • Concept-elicitation phase for the development of the pediatric patient-reported outcome version of the Common Terminology Criteria for Adverse Events CANCER Weaver, M. S., Reeve, B. B., Baker, J. N., Martens, C. E., McFatrich, M., Mowbray, C., Palma, D., Sung, L., Tomlinson, D., Withycombe, J., Hinds, P. 2016; 122 (1): 141-148

    Abstract

    Symptoms arising from disease or treatment are subjective experiences. Insight into pediatric oncology treatment side effects or symptoms is ideally obtained from direct inquiry to the ill child. A concept-elicitation phase in a patient-reported outcome (PRO) instrument design provides an opportunity to elicit children's voices to shape cancer symptom selection and terminology.Through semistructured, one-on-one, voice-recorded interviews, symptom data were collected from 96 children with cancer between the ages of 7 and 20 years who were undergoing oncologic treatment at 7 pediatric oncology sites in the United States and Canada.The mean number of symptoms reported per child over the prior 7 days was 1.49 (range, 0-7; median, 1; standard deviation, 1.56). The most common symptoms across all age groups were tiredness or fatigue, nausea or vomiting, aches or pains, and weakness. There was not a statistically significant correlation between self-reported wellness and the number of reported symptoms (r = -0.156, n = 65, P = .215) or the number of symptoms reported by age group or diagnosis type. Forty participants reported experiencing a change in their body in the past week, with one-third of these changes unanticipated. Only through direct questions about feelings were emotional symptoms revealed because 90.6% of interviewees who discussed feelings (48 of 53) did so only in the context of direct questioning on feelings. Adolescents were more likely than younger children to discuss feelings as part of the interview.Concept elicitation from children and adolescents has the potential to enable researchers to develop age-appropriate, accurately representative PRO measures.

    View details for DOI 10.1002/cncr.29702

    View details for Web of Science ID 000367984900020

    View details for PubMedID 26421973

    View details for PubMedCentralID PMC4707103

  • Palliative Care Version 1.2016 JOURNAL OF THE NATIONAL COMPREHENSIVE CANCER NETWORK Levy, M., Smith, T., Alvarez-Perez, A., Back, A., Baker, J. N., Beck, A. C., Block, S., Dalal, S., Dans, M., Fitch, T. R., Kapo, J., Kutner, J. S., Kvale, E., Misra, S., Mitchell, W., Portman, D. G., Sauer, T. M., Spiegel, D., Sutton, L., Szmuilowicz, E., Taylor, R. M., Temel, J., Tickoo, R., Urba, S. G., Weinstein, E., Zachariah, F., Bergman, M. A., Scavone, J. L. 2016; 14 (1): 82-113

    Abstract

    The NCCN Guidelines for Palliative Care provide interdisciplinary recommendations on palliative care for patients with cancer. The NCCN Guidelines are intended to provide guidance to the primary oncology team on the integration of palliative care into oncology. The NCCN Palliative Care Panel's recommendations seek to ensure that each patient experiences the best quality of life possible throughout the illness trajectory. Accordingly, the NCCN Guidelines outline best practices for screening, assessment, palliative care interventions, reassessment, and after-death care.

    View details for Web of Science ID 000367629000010

  • Adolescents' Preferences for Treatment Decisional Involvement During Their Cancer CANCER Weaver, M. S., Baker, J. N., Gattuso, J. S., Gibson, D. V., Sykes, A. D., Hinds, P. S. 2015; 121 (24): 4416-4424

    Abstract

    This qualitative study investigated the medical decision-making preferences of adolescent oncology patients and the parental and clinician behaviors that adolescents report to be supportive of their preferred level of decision-making involvement.Interviews were conducted with 40 adolescents between the ages of 12 and 18 years who were undergoing cancer treatment in Memphis, Tenn or Washington, DC. Role preferences were converted into a predetermined Likert scale decisional preference score. A semantic content analysis was used to analyze patient reports of parental behaviors, attitudes, knowledge levels, and relational interactions that facilitated their preferred level of involvement in decision making. Clinician behaviors described as supportive of decisional processes were also categorized thematically. A teen advisory council validated study findings. Data reporting followed strict adherence to Consolidated Criteria for Reporting Qualitative Research guidelines.Adolescents indicated a spectrum of preferred decisional roles, with the most common being an actively involved role (26 of 40 or 65%), although a shared decision-making approach was still valued. There was no statistically significant difference in the preferred decisional role with respect to demographic or medical characteristics, including the relapse status, although adolescents who preferred autonomous interview settings were more likely to prefer active decisional roles (P < .001). Adolescents recognized that situational and social contexts might shift their preferred level of involvement in medical decisions. Although adolescents wanted to be involved in decisions, they also expressed an appreciation of family insight, parental presence, and clinician guidance.Adolescents with cancer are able to retrospectively identify their preferences for inclusion in medical decision making, and even when preferring involvement, they value the input of trusted others.

    View details for DOI 10.1002/cncr.29663

    View details for Web of Science ID 000367984700020

    View details for PubMedID 26348790

  • Empowering bereaved parents in the development of a comprehensive bereavement program Snaman, J., Phillips, C., Levine, D. R., Baker, J. N. AMER SOC CLINICAL ONCOLOGY. 2015
  • Integrating the child's voice in adverse event reporting in oncology trials: cognitive interview findings from the multisite pediatric PRO-CTCAE initiative Reeve, B. B., McFatrich, M., Baker, J. N., Freyer, D. R., Gagne, J., Gattuso, J. S., Gibson, D., Kohler, R. E., Levine, A., Lollar, S., Lukshis, J., Mack, J. W., Martens, C., Mowbray, C., Palma, D., Pinheiro, L. C., Sung, L., Taddei, S. C., Tomlinson, D., Waldron, M., Weaver, M., Wind, J., Withycombe, J., Hinds, P. S. SPRINGER. 2015: 161-162
  • Evaluation of Physician and Nurse Dyad Training Procedures to Deliver a Palliative and End-of-Life Communication Intervention to Parents of Children with a Brain Tumor JOURNAL OF PEDIATRIC ONCOLOGY NURSING Hendricks-Ferguson, V. L., Kane, J. R., Pradhan, K. R., Shih, C., Gauvain, K. M., Baker, J. N., Haase, J. E. 2015; 32 (5): 337-347

    Abstract

    When a child's prognosis is poor, physicians and nurses (MDs/RNs) often struggle with initiating discussions about palliative and end-of-life care (PC/EOL) early in the course of illness trajectory. We describe evaluation of training procedures used to prepare MD/RN dyads to deliver an intervention entitled: Communication Plan: Early Through End of Life (COMPLETE) intervention. Our training was delivered to 5 pediatric neuro-oncologists and 8 pediatric nurses by a team of expert consultants (i.e., in medical ethics, communication, and PC/EOL) and parent advisors. Although half of the group received training in a 1-day program and half in a 2-day program, content for all participants included 4 modules: family assessment, goal-directed treatment planning, anticipatory guidance, and staff communication and follow-up. Evaluations included dichotomous ratings and qualitative comments on content, reflection, and skills practice for each module. Positive aspects of our training included parent advisers' insights, emphasis on hope and non-abandonment messages, written materials to facilitate PC/EOL communication, and an MD/RN dyad approach. Lessons learned and challenges related to our training procedures will be described. Overall, the MDs and RNs reported that our PC/EOL communication-training procedures were helpful and useful. Future investigators should carefully plan training procedures for PC/EOL communication interventions.

    View details for DOI 10.1177/1043454214563410

    View details for Web of Science ID 000359417800010

    View details for PubMedID 25623029

    View details for PubMedCentralID PMC5918283

  • Methylnaltrexone for Opioid-Induced Constipation in Children and Adolescents and Young Adults with Progressive Incurable Cancer at the End of Life JOURNAL OF PALLIATIVE MEDICINE Flerlage, J. E., Baker, J. N. 2015; 18 (7): 631-633

    Abstract

    Opioid-induced constipation (OIC) is common among children and adolescents and young adults (AYA) with progressive incurable cancer. Although methylnaltrexone is a successful treatment for OIC in adult cancer patients, no case series has established its safety and efficacy in pediatric cancer patients.The aim of the study was to describe the safety and efficacy of methylnaltrexone use for OIC in children and AYA with progressive incurable cancer at the end of life in the inpatient and outpatient settings.We conducted a retrospective review of medical records of children and AYA with progressive incurable cancer who received methylnaltrexone at our institution from May 2008 to June 2013. Pharmacy data were reviewed for each patient and a chart review was performed for documentation of laxation and side effects.Of the 9 patients (age range: 17 months to 21 years) with progressive incurable cancer who developed OIC, 7 (78%) had laxation after methylnaltrexone administration (0.15 mg/kg/dose). Of these 7 patients, 5 (71%) had laxation with the first dose, and 5 (71%) who responded had a continued response to repeated doses. The longest a patient regularly received methylnaltrexone was 9 months. Of 5 patients with intraabdominal disease, 4 (80%) had laxation. There were no negative side effects in any of the patients. Also, there was no increase in pain either qualitatively or by pain score.Methylnaltrexone appears to be safe and efficacious in treating OIC in children and AYA with progressive incurable cancer. Methylnaltrexone was tolerated in both the inpatient and outpatient settings and with repeated dosing.

    View details for DOI 10.1089/jpm.2014.0364

    View details for Web of Science ID 000361880600011

    View details for PubMedID 25927665

    View details for PubMedCentralID PMC4492591

  • Pediatric palliative care in the community CA-A CANCER JOURNAL FOR CLINICIANS Kaye, E. C., Rubenstein, J., Levine, D., Baker, J. N., Dabbs, D., Friebert, S. E. 2015; 65 (4): 315-333

    Abstract

    Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed.

    View details for DOI 10.3322/caac.21280

    View details for Web of Science ID 000357810000008

    View details for PubMedID 25955682

  • Ethical Decision Making About End-of-life Care Issues by Pediatric Oncologists in Economically Diverse Settings JOURNAL OF PEDIATRIC HEMATOLOGY ONCOLOGY Varela, A., Johnson, L., Kane, J. R., Kasow, K. A., Quintana, Y., Coan, A., Yuan, Y., Barfield, R., Church, C., Hester, M., Baker, J. N. 2015; 37 (4): 257-263

    Abstract

    Pediatric cancer represents 1% to 4% of all cancers worldwide, with the majority of diagnoses in developing countries where mortality remains much higher than that in high-income countries. We sought to describe differences in ethical decision-making at the end of life among an international sample of pediatric oncologists practicing in countries with a variety of income levels and resource settings.Pediatric oncologists subscribing to an educational international oncology Web site were invited to complete a 38-item web-based survey investigating ethical domains related to end-of-life care: level of care, fiduciary responsibility, decision making, and justice.Responses were received from 401 physicians in 83 countries, with most respondents practicing in middle-income or high-income countries. Significant differences in attitudes toward ethical issues existed across the national developmental indices.Further education on ethical principles is warranted in pediatric oncology, particularly among oncologists practicing in low-income or middle-income countries.

    View details for DOI 10.1097/MPH.0000000000000271

    View details for Web of Science ID 000353301600019

    View details for PubMedID 25887639

  • Communication about the risks and benefits of phase I pediatric oncology trials CONTEMPORARY CLINICAL TRIALS Hazen, R. A., Zyzanski, S., Baker, J. N., Drotar, D., Kodish, E. 2015; 41: 139-145

    Abstract

    Phase 1 pediatric oncology trials offer only a small chance of direct benefit and may have significant risks and an impact on quality of life. To date, research has not examined discussions of risks and benefits during informed consent conferences for phase 1 pediatric oncology trials. The objective of the current study was to examine clinician and family communication about risks, benefits, and quality of life during informed consent conferences for phase 1 pediatric oncology trials.Participants included clinician investigators, parents, and children recruited from 6 sites conducting phase 1 pediatric oncology trials. Eighty-five informed consent conferences were observed and audiotaped. Trained coders assessed discussions of risks, benefits, and quality of life. Types of risks discussed were coded (e.g., unanticipated risks, digestive system risks, and death). Types of benefits were categorized as therapeutic (e.g., discussion of how participation may or may not directly benefit child), psychological, bridge to future trial, and altruism.Risks and benefits were discussed in 95% and 88% of informed consent conferences, respectively. Therapeutic benefit was the most frequently discussed benefit. The impact of trial participation on quality of life was discussed in the majority (88%) of informed consent conferences.Therapeutic benefit, risks, and quality of life were frequently discussed. The range of information discussed during informed consent conferences suggests the need for considering a staged process of informed consent for phase 1 pediatric oncology trials.

    View details for DOI 10.1016/j.cct.2015.01.015

    View details for Web of Science ID 000353000500017

    View details for PubMedID 25638751

    View details for PubMedCentralID PMC4404031

  • Reported Availability and Gaps of Pediatric Palliative Care in Low- and Middle-Income Countries: A Systematic Review of Published Data JOURNAL OF PALLIATIVE MEDICINE Brown, A., Howard, S. C., Baker, J. N., Ribeiro, R. C., Lam, C. G. 2014; 17 (12): 1369-1383

    Abstract

    The majority of young people in need of palliative care live in low- and middle-income countries, where curative treatment is less available.We systematically reviewed published data describing palliative care services available to young people with life-limiting conditions in low- and middle-income countries and assessed core elements with respect to availability, gaps, and under-reported aspects.PubMed, CINAHL, EMBASE (1980-2013), and secondary bibliographies were searched for publications that included patients younger than 25 years with life-limiting conditions and described palliative care programs in low- and middle-income countries. A data extraction checklist considered 15 items across seven domains: access, education/capacity building, health system support, pain management, symptom management, end-of-life care, and bereavement. Data were aggregated by program and country.Of 1572 records, 238 met criteria for full-text review; 34 qualified for inclusion, representing 30 programs in 21 countries. The median checklist score was 7 (range, 1-14) of 10 reported (range, 3-14). The most pervasive gaps were in national health system support (unavailable in 7 of 17 countries with programs reporting), specialized education (unavailable in 7 of 19 countries with programs reporting), and comprehensive opioid access (unavailable in 14 of 21 countries with programs reporting). Underreported elements included specified practices for pain management and end-of-life support.Comprehensive pediatric palliative care provision is possible even in markedly impoverished settings. Improved national health system support, specialized training and opioid access are key targets for research and advocacy. Application of a checklist methodology can promote awareness of gaps to guide program evaluation, reporting, and strengthening.

    View details for DOI 10.1089/jpm.2014.0095

    View details for Web of Science ID 000346336200016

    View details for PubMedID 25225748

    View details for PubMedCentralID PMC4268583

  • Patient Involvement in Informed Consent for Pediatric Phase I Cancer Research JOURNAL OF PEDIATRIC HEMATOLOGY ONCOLOGY Miller, V. A., Baker, J. N., Leek, A. C., Drotar, D., Kodish, E. 2014; 36 (8): 635-640

    Abstract

    To examine children's and adolescents' involvement in the informed consent conference for phase I cancer trials and test associations with patient age, ease of understanding, and pressure to participate.Participants included 61 patients aged 7 through 21 years who were offered participation in a phase I trial. Consent conferences were audiotaped, transcribed, and coded for communication between patients and physicians and between patients and parents.On the basis of word counts, the mean proportion of the consent conference in which the physician was talking to the patient was 36%; the vast majority (73%) of this communication consisted of giving information. Physician-patient communication increased with age, but overall levels of patient-to-physician communication were low (3%). After controlling for patient age, greater physician-to-patient communication was associated with greater ease of understanding.The focus on providing information in the context of informed consent may come at the expense of other communication exchanges that are important to patients, especially in the context of end-of-life decisions. Children and adolescents may benefit from the assent process when physicians direct more of their communication to them. Future research should identify the reasons for low patient communication during the consent conference and strategies to enhance their participation in decision making about phase I trial enrollment.

    View details for DOI 10.1097/MPH.0000000000000112

    View details for Web of Science ID 000344224500028

    View details for PubMedID 24487916

    View details for PubMedCentralID PMC4116468

  • Management of diffuse intrinsic pontine glioma in children: current and future strategies for improving prognosis. CNS oncology Kaye, E. C., Baker, J. N., Broniscer, A. 2014; 3 (6): 421-31

    Abstract

    Diffuse intrinsic pontine glioma (DIPG) is one of the deadliest pediatric central nervous system cancers in spite of treatment with radiation therapy, the current standard of care. The outcome of affected children remains dismal despite multiple clinical trials that investigated radiation therapy combined with chemotherapy. Recently, multiple genome-wide studies unveiled the distinct molecular characteristics of DIPGs and preclinical models of DIPG were developed to mimic the human disease. Both of these accomplishments have generated tremendous progress in the research of new therapies for children with DIPG. Here we review some of these promising new strategies.

    View details for DOI 10.2217/cns.14.47

    View details for PubMedID 25438813

  • Palliative Care, Version 1.2014 Featured Updates to the NCCN Guidelines JOURNAL OF THE NATIONAL COMPREHENSIVE CANCER NETWORK Levy, M. H., Smith, T., Alvarez-Perez, A., Back, A., Baker, J. N., Block, S., Codada, S. N., Dalal, S., Dans, M., Kutner, J. S., Kvale, E., Misra, S., Mitchell, W., Sauer, T. M., Spiegel, D., Sutton, L., Taylor, R. M., Temel, J., Tickoo, R., Urba, S. G., Van Zyl, C., Weinstein, S. M., Bergman, M. A., Scavone, J. L. 2014; 12 (10): 1379-1388

    Abstract

    The NCCN Guidelines for Palliative Care provide interdisciplinary recommendations on palliative care for patients with cancer. These NCCN Guidelines Insights summarize the NCCN panel's discussions and guideline updates from 2013 and 2014. These include modifications/additions to palliative care screening and assessment protocols, new considerations for discussing the benefits and risks of anticancer therapy, and approaches to advance care planning. Recent updates focus on enhanced patient-centered care and seek to promote earlier integration of palliative care and advance care planning in oncology.

    View details for Web of Science ID 000343275600004

  • End-of-Life Care for Hospitalized Children PEDIATRIC CLINICS OF NORTH AMERICA Johnson, L., Snaman, J. M., Cupit, M. C., Baker, J. N. 2014; 61 (4): 835-854

    Abstract

    High-quality palliative care is the standard for children with life-threatening illness, especially when a cure is not possible. This review outlines a model for clinical practice that integrates clinical, psychosocial, and ethical concerns at the end of life (EOL) into a standard operating procedure specifically focused on inpatient deaths. Palliative care for children at EOL in the hospital setting should encompass the personal, cultural, and spiritual needs of the child and family members and aim to minimize suffering and increase support for all who are involved, including hospital staff.

    View details for DOI 10.1016/j.pcl.2014.04.012

    View details for Web of Science ID 000340686200018

    View details for PubMedID 25084727

  • "Occult" post-contrast signal enhancement in pediatric diffuse intrinsic pontine glioma is the MRI marker of angiogenesis? NEURORADIOLOGY Conway, A. E., Reddick, W. E., Li, Y., Yuan, Y., Glass, J. O., Baker, J. N., Kun, L. E., Broniscer, A., Patay, Z. 2014; 56 (5): 405-412

    Abstract

    In diffuse intrinsic pontine gliomas (DIPG), subtracting pre-contrast from post-contrast T1-weighted images (T1WI) occasionally reveals subtle, "occult" enhancement. We hypothesized that this represents intravascular enhancement related to angiogenesis and hence that these tumors should have greater blood volume fractions than do non-enhancing tumors.We retrospectively screened MR images of 66 patients initially diagnosed with DIPG and analyzed pretreatment conventional and dynamic susceptibility contrast (DSC) perfusion MRI studies of 61 patients. To determine the incidence of occult enhancement, cerebral blood volume (CBV) values were compared in areas of occult enhancement (OcE), no enhancement (NE), and normal-appearing deep cerebellar white matter (DCWM).Tumors of 10 patients (16.4 %) had occult enhancement; those of 6 patients (9.8 %) had no enhancement at all. The average CBV in areas of occult enhancement was significantly higher than that in non-enhancing areas of the same tumor (P = .03), within DCWM in the same patient (P = .03), and when compared to anatomically paired/similar regions of interest (ROI) in patients with non-enhancing tumors (P = .005).Areas of OcE correspond to areas of higher CBV in DIPG, which may be an MRI marker for angiogenesis, but larger scale studies may be needed to determine its potential relevance to grading by imaging, treatment stratification, biopsy guidance, and evaluation of response to targeted therapy.

    View details for DOI 10.1007/s00234-014-1348-9

    View details for Web of Science ID 000335758700008

    View details for PubMedID 24626721

    View details for PubMedCentralID PMC4249726

  • Suggestions From Adolescents, Young Adults, and Parents for Improving Informed Consent in Phase 1 Pediatric Oncology Trials CANCER Baker, J. N., Leek, A. C., Salas, H., Drotar, D., Noll, R., Rheingold, S. R., Kodish, E. D. 2013; 119 (23): 4154-4161

    Abstract

    Informed consent for a pediatric oncology phase 1 trial is a delicate process, and is made more complex by the difficulty of the information and the requirement for parental consent, and patient assent when applicable. This analysis identifies suggestions for improving the informed consent process received from parents and adolescent and young adult patients (aged 14 years-21 years) who had the option of participating in a phase 1 pediatric oncology trial.A total of 57 parents and 20 patients completed interviews as part of a multisite, prospective, descriptive study. These transcribed interviews were studied using established content analysis methods.Parent and patient responses contained 220 suggestions and 54 suggestions, respectively. A total of 21 unique suggestions for improvement emerged in 3 main themes: 1) provision of more information; 2) structure and presentation of the informed consent process, and 3) suggestions for physicians conducting the process. Common suggestions included providing more specific information about the trial, allowing more time for decision-making, and using different methods to deliver information.Participants involved in the informed consent process for a phase 1 trial provided specific recommendations to research teams to enhance the process. Physician/investigators should be informed of these recommendations and develop and test interventions incorporating them.

    View details for DOI 10.1002/cncr.28335

    View details for Web of Science ID 000327832800015

    View details for PubMedID 24006119

  • Methylnaltrexone Use in a Seventeen-Month-Old Female with Progressive Cancer and Rectal Prolapse JOURNAL OF PALLIATIVE MEDICINE Laubisch, J. E., Baker, J. N. 2013; 16 (11): 1486-1488

    Abstract

    Opioid-induced constipation is commonly seen in pediatrics, especially at the end of life. As patients clinically decline, constipation often leads to increased pain and distress, while its enteral treatment becomes more challenging.There is little information about the safety and use of methylnaltrexone in children. We present the case of a 17-month-old girl with progressive leukemia who was at the end of her life and whose severe opioid-induced constipation and rectal prolapse was successfully treated with the μ-opioid-receptor antagonist methylnaltrexone. We selected a lower dose based on our lack of experience with methylnaltrexone in this age group and concern for potential complications given her rectal prolapse.Opioid-induced constipation, abdominal distention, and rectal prolapse caused our patient's most distressing symptoms, even in the context of advanced cancer. A single dose of subcutaneous methylnaltrexone (0.12 mg/kg) resolved her constipation and rectal prolapse within one hour. Although evidence is limited, the drug has successfully been used in pediatric patients with no reported side effects to date. We recommend its use earlier in the course of severe opioid-induced constipation in children unable to tolerate an oral laxation regimen. Prospective research is needed to establish the parameters for use of this effective agent in children who cannot tolerate other regimens.

    View details for DOI 10.1089/jpm.2012.0600

    View details for Web of Science ID 000326884800036

    View details for PubMedID 23746197

    View details for PubMedCentralID PMC3822361

  • EVALUATING HOME-BASED PEDIATRIC PALLIATIVE CARE GLOBALLY: A SYSTEMATIC REVIEW Brown, A., Howard, S. C., Baker, J. N., Ribeiro, R. C., Lam, C. G. WILEY-BLACKWELL. 2013: 171
  • Best practices for pediatric palliative cancer care: a primer for clinical providers. The journal of supportive oncology Levine, D., Lam, C. G., Cunningham, M. J., Remke, S., Chrastek, J., Klick, J., Macauley, R., Baker, J. N. 2013; 11 (3): 114-25

    Abstract

    Cancer is the leading cause of disease-related death in children and adolescents. Pediatric patients with cancer suffer greatly at the end of life. However, palliative care interventions can reduce suffering and significantly improve the care of these patients and their families. A large percentage of pediatric deaths occur outside of the hospital setting where pediatric palliative resources may not be readily available. Patients in the home setting may be cared for by community hospice programs, which are typically staffed for adult populations. Increasingly, nonpediatric providers are asked to provide palliative care for children and adolescents at the end of life, yet they receive little formal training in this area. This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Our intent is to aid clinical providers in delivering optimal care to this patient population. Topics unique to pediatric palliative care that are addressed include: providing pain and symptom management in the broad pediatric range from neonate to adolescent; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care.

    View details for PubMedID 24400391

  • The first step to integrating the child's voice in adverse event reporting in oncology trials: A content validation study among pediatric oncology clinicians PEDIATRIC BLOOD & CANCER Reeve, B. B., Withycombe, J. S., Baker, J. N., Hooke, M. C., Lyons, J. C., Mowbray, C., Wang, J., Freyer, D. R., Joffe, S., Sung, L., Tomlinson, D., Gold, S. H., Hinds, P. S. 2013; 60 (7): 1231-1236

    Abstract

    Children with cancer experience significant toxicities while undergoing treatment. Documentation of adverse events (AEs) in clinical trials is mandated by federal agencies. Although many AEs are subjective, the current standard is clinician reporting. Our long-term goal is to create and validate a self-report measure of subjective AEs for children aged 7 years and older that will inform AE reporting for the National Cancer Institute's Common Terminology Criteria for Adverse Events (CTCAE). This content validation study aimed to identify which of the AEs in the current CTCAE should be included in a pediatric self-report measure.We sought expert panel review and consensus among 187 pediatric clinicians from seven Children's Oncology Group institutions to determine which of the 790 AEs are amenable to child self-report. Two survey iterations were used to identify suitable AEs, and clinician agreement estimated by the content-validity ratio (CVR) was assessed.Response rates for surveys 1 and 2 were 72% and 67%, respectively. After the surveys, 64 CTCAE terms met the criteria of being subjective, relevant for use in pediatric cancer trials, and amenable to self-report by a child. The most frequent reasons for removal of CTCAE terms were that they relied on laboratory or clinical measures or were not applicable to children.The 64 CTCAE terms will be translated into child-friendly terms as the basis of the child-report toxicity measure. Ultimately, systematic collection of these data will improve care by enhancing the accuracy and completeness of treatment toxicity reports for childhood cancer.

    View details for DOI 10.1002/pbc.24463

    View details for Web of Science ID 000319361300037

    View details for PubMedID 23335328

  • Phase I Trial, Pharmacokinetics, and Pharmacodynamics of Vandetanib and Dasatinib in Children with Newly Diagnosed Diffuse Intrinsic Pontine Glioma CLINICAL CANCER RESEARCH Broniscer, A., Baker, S. D., Wetmore, C., Panandiker, A., Huang, J., Davidoff, A. M., Onar-Thomas, A., Panetta, J. C., Chin, T. K., Merchant, T. E., Baker, J. N., Kaste, S. C., Gajjar, A., Stewart, C. F. 2013; 19 (11): 3050-3058

    Abstract

    Testing of promising drug combinations is crucial in the treatment of diffuse intrinsic pontine glioma (DIPG). As the VEGF and platelet-derived growth factor (PDGF) pathways are critical in gliomas, we evaluated the safety, maximum tolerated dose (MTD), pharmacokinetics, and pharmacodynamics of vandetanib, a VEGFR-2 inhibitor, combined with dasatinib, a potent PDGFR inhibitor, during and after radiotherapy in children with newly diagnosed DIPG.Dasatinib was started concurrently with radiotherapy. Vandetanib was started 8 days later. We tested increasing doses of vandetanib (65 and 85 mg/m(2) once daily) and dasatinib (65 and 85 mg/m(2) twice daily). Dose-limiting toxicities were evaluated during the first 6 weeks of therapy. Plasma pharmacokinetics was obtained on days 8 and 42 ± 3 in all patients and concomitantly with cerebrospinal fluid (CSF) when possible. Inhibition of targets of dasatinib in peripheral blood mononuclear cells (PBMC) was evaluated.Twenty-five patients were treated. Treatment was well tolerated. The median duration of treatment was 184 days. Diarrhea was the most significant toxicity. Three patients experienced substantial myelosuppression. The steady-state plasma pharmacokinetics of vandetanib was comparable with previous studies. Although the plasma exposure to dasatinib decreased from days 8 to 42, it remained similar to adult studies. CSF to plasma exposure of vandetanib and dasatinib were approximately 2% in 2 patients. Phosphorylated 70S6K decreased during therapy in PBMCs.The MTD of vandetanib and dasatinib in combination was 65 mg/m(2) for each drug. Other studies are underway to test dasatinib and other PDGFR inhibitors alone or in combination for this deadly cancer.

    View details for DOI 10.1158/1078-0432.CCR-13-0306

    View details for Web of Science ID 000319732000029

    View details for PubMedID 23536435

    View details for PubMedCentralID PMC3685168

  • GLOBAL MAP OF PEDIATRIC PALLIATIVE CARE IN LOW- AND MIDDLE-INCOME COUNTRIES: SYSTEMATIC REVIEW OF AVAILABILITY OF CORE ELEMENTS AND REPORTING OF PROGRAMMATIC OUTCOMES Brown, A., Howard, S., Baker, J., Ribeiro, R., Lam, C. WILEY-BLACKWELL. 2013: S88
  • Adolescent perspectives on phase I cancer research PEDIATRIC BLOOD & CANCER Miller, V. A., Baker, J. N., Leek, A. C., Hizlan, S., Rheingold, S. R., Yamokoski, A. D., Drotar, D., Kodish, E. 2013; 60 (5): 873-878

    Abstract

    The aim of this study was to examine adolescent patients' perspectives on their understanding and decision making about a pediatric phase I cancer study.Participants included adolescents ages 14-21 years with cancer (N = 20), all of whom attended a phase I study consent conference. Participants responded to closed- and open-ended questions on a verbally administered structured interview, which assessed aspects of understanding and decision making about the phase I study.All participants decided to enroll in the phase I study. The majority of participants understood that participation was voluntary, entailed risks, and that they could withdraw. Most also believed that participation in the phase I study would increase the length of their lives. The most frequent reasons for enrolling were positive clinical benefit, needing an option, impact on quality of life, and few side effects or fewer than those of current or past treatments. Eighty-five percent of participants reported that they themselves made the final decision about enrollment in the phase I study.Most participants hoped or expected that the phase I study would provide a direct benefit (increased survival time or cure) and reported that they themselves were the final decision-maker about enrollment. Clinicians may underestimate the role of adolescents, especially if they believe that parents typically make such decisions. Future research should assess the actual participation of children and adolescents during the informed consent process and explore the role of hope in their decision making about phase I studies.

    View details for DOI 10.1002/pbc.24326

    View details for Web of Science ID 000316291700026

    View details for PubMedID 23034985

    View details for PubMedCentralID PMC3538102

  • Recommendations for the Return of Research Results to Study Participants and Guardians: A Report From the Children's Oncology Group JOURNAL OF CLINICAL ONCOLOGY Fernandez, C. V., Ruccione, K., Wells, R. J., Long, J. B., Pelletier, W., Hooke, M. C., Pentz, R. D., Noll, R. B., Baker, J. N., O'Leary, M., Reaman, G., Adamson, P. C., Joffe, S. 2012; 30 (36): 4573-4579

    Abstract

    The Children's Oncology Group (COG) strongly supports the widely recognized principle that research participants should be offered a summary of study results. The mechanism by which to do so in a cooperative research group setting has not been previously described.On the basis of a review of the available empirical and theoretic literature and on iterative, multidisciplinary discussion, a COG Return of Results Task Force (RRTF) offered detailed recommendations for the return of results to research study participants.The RRTF established guidelines for the notification of research participants and/or their parents/guardians about the availability of research results, a mechanism for and timing of sharing results via registration on the COG public Web site, the scope of the research to be shared, the target audience, and a process for creating and vetting lay summaries of study results. The RRTF recognized the challenges in adequately conveying complex scientific results to audiences with varying levels of health literacy and recommended that particularly sensitive or complex results be returned using direct personal contact. The RRTF also recommended evaluation of the cost, effectiveness, and impact of sharing results.These recommendations provide a framework for the offering and returning of results to participants. They can be used by individual investigators, multi-investigator research collaboratives, and large cooperative groups.

    View details for DOI 10.1200/JCO.2012.45.2086

    View details for Web of Science ID 000312815000025

    View details for PubMedID 23109703

    View details for PubMedCentralID PMC3518731

  • Communicating and Understanding the Purpose of Pediatric Phase I Cancer Trials JOURNAL OF CLINICAL ONCOLOGY Cousino, M. K., Zyzanski, S. J., Yamokoski, A. D., Hazen, R. A., Baker, J. N., Noll, R. B., Rheingold, S. R., Geyer, J., Alexander, S. C., Drotar, D., Kodish, E. D. 2012; 30 (35): 4367-4372

    Abstract

    Quality informed consent should provide a clear understanding of the purpose of the research. Given the ethical challenges of pediatric phase I cancer trials, it is important to investigate physician-parent communication during informed consent conferences (ICCs) and parental understanding of the purpose of these studies.In the multisite Informed Consent in Pediatric Phase I Cancer Trials study, 85 ICCs for phase I research between June 2008 and May 2011 were directly observed, and 60 parents were subsequently interviewed. The scientific purpose was defined as composite understanding of drug safety, dose finding, and dose escalation. We determined the frequency with which physicians explained these and other phase I-related concepts during the ICC. Parent interviews were analyzed to determine understanding.The child was present at 83 of 85 ICCs. Only 32% of parents demonstrated substantial understanding of the scientific purpose of phase I cancer trials; 35% demonstrated little or no understanding. Parents of higher socioeconomic status and racial majority status were more likely to understand the scientific purpose. Factors associated with understanding included physician explanation of the goal of the applicable phase I protocol offered (explained in 85% of ICCs) and explanation of the dose cohorts (explained in 43% of ICCs). Physicians explained drug safety in 23% of ICCs, dose finding in 52% of ICCs, and dose escalation in 53% of ICCs.Many parents of children participating in phase I trials do not understand the purpose of these trials. Physician-parent communication about the purpose of phase I research is lacking during ICCs.

    View details for DOI 10.1200/JCO.2012.42.3004

    View details for Web of Science ID 000312195900019

    View details for PubMedID 23071225

    View details for PubMedCentralID PMC3515769

  • CREATING A CHILD SELF-REPORT MEASURE OF ADVERSE EVENTS RELATED TO CANCER TREATMENT Hinds, P. S., Baker, J. N., Freyer, D., Hooke, C., Joffe, S., Mowbray, C., Wang, J., Withycombe, J., Reeve, B. WILEY-BLACKWELL. 2012: 1119-1120
  • GLOBAL MAP OF PEDIATRIC PALLIATIVE CARE IN LOW- AND MIDDLE-INCOME COUNTRIES: SYSTEMATIC REVIEW OF THE AVAILABILITY OF CORE ELEMENTS Brown, A., Howard, S. C., Baker, J., Ribeiro, R. C., Lam, C. G. WILEY PERIODICALS, INC. 2012: 1006-1007
  • Pediatric Palliative Sedation Therapy with Propofol: Recommendations Based on Experience in Children with Terminal Cancer JOURNAL OF PALLIATIVE MEDICINE Anghelescu, D. L., Hamilton, H., Faughnan, L. G., Johnson, L., Baker, J. N. 2012; 15 (10): 1082-1090

    Abstract

    The use of propofol for palliative sedation of children is not well documented.Here we describe our experience with the use of propofol palliative sedation therapy (PST) to alleviate intractable end-of-life suffering in three pediatric oncology patients, and propose an algorithm for the selection of such candidates for PST.We identified inpatients who had received propofol PST within 20 days of death at our institution between 2003 and 2010. Their medical records were reviewed for indicators of pain, suffering, and sedation from 48 hours before PST to the time of death. We also tabulated consumption of opioids and other symptom management medications, pain scores, and adverse events of propofol, and reviewed clinical notes for descriptors of suffering and/or palliation.Three of 192 (1.6%) inpatients (aged 6-15 years) received propofol PST at the end of life. Consumption of opioids and other supportive medications decreased during PST in two cases. In the third case, pain scores remained high and sedation was the only effective comfort measure. Clinical notes suggested improved comfort and rest in all patients. Propofol infusions were continued until the time of death.Our experience demonstrates that propofol PST is a useful palliative option for pediatric patients experiencing intractable suffering at the end of life. We describe an algorithm that can be used to identify such children who are candidates for PST.

    View details for DOI 10.1089/jpm.2011.0500

    View details for Web of Science ID 000308705500009

    View details for PubMedID 22731512

    View details for PubMedCentralID PMC3438821

  • Development of a Therapeutic Algorithm to Guide Clinicians Considering Palliative Sedation Therapy in Pediatric Patients at the End of Life Johnson, L., Anghelescu, D. L., Hamilton, D., Faughnan, L. G., Baker, J. N. CENTRE RECHERCHE INSTITUT UNIV GERIATRIE MONTREAL. 2012: 190
  • An Unusual Case of Ogilvie Syndrome in a Pediatric Oncology Patient Receiving Palliative Care after Failed Treatment with Neostigmine JOURNAL OF PALLIATIVE MEDICINE Johnson, L., Spraker, H. L., Coleman, J. L., Baker, J. N. 2012; 15 (9): 1042-1046

    Abstract

    We present a case of severe refractory constipation in an adolescent oncology patient with widely metastatic clear cell osteosarcoma who was ultimately found to have Ogilvie syndrome, also known as acute colonic pseudo-obstruction (ACPO). Ogilvie syndrome is characterized by dilatation of the large intestine in the absence of mechanical obstruction, usually occurring in adult patients with serious underlying medical conditions and rarely seen in children. It is likely that chronic narcotic use, abdominal metastasis, and a paraneoplastic process contributed to development of ACPO in this patient.This case highlights an infrequent, but important, gastrointestinal complication that can occur in pediatric patients with serious comorbid disease. Ogilvie syndrome should be included on the differential diagnosis list in pediatric patients with refractory constipation. Our case illustrates the progression of therapies, including surgical intervention that can be undertaken to treat this disorder in children and adults while providing important considerations for clinicians treating patients of any age with this unusual clinical complication.

    View details for DOI 10.1089/jpm.2011.0450

    View details for Web of Science ID 000308699900019

    View details for PubMedID 22946581

  • Parent-Clinician Communication Intervention during End-of-Life Decision Making for Children with Incurable Cancer JOURNAL OF PALLIATIVE MEDICINE Hinds, P. S., Oakes, L. L., Hicks, J., Powell, B., Srivastava, D. K., Baker, J. N., Spunt, S. L., West, N. K., Furman, W. L. 2012; 15 (8): 916-922

    Abstract

    In this single-site study, we evaluated the feasibility of a parent-clinician communication intervention designed to: identify parents' rationale for the phase I, do-not-resuscitate (DNR), or terminal care decision made on behalf of their child with incurable cancer; identify their definition of being a good parent to their ill child; and provide this information to the child's clinicians in time to be of use in the family's care.Sixty-two parents of 58 children and 126 clinicians participated. Within 72 hours after the treatment decision, parents responded to 6 open-ended interview questions and completed a 10-item questionnaire about the end-of-life communication with their child's clinicians. They completed the questionnaire again two to three weeks later and responded to three open-ended questions to assess the benefit:risk ratio of their study participation three months after the intervention. Clinicians received the interview data within hours of the parent interview and evaluated the usefulness of the information three weeks later.All preestablished intervention feasibility criteria were met; 77.3% of families consented; and in 100% of interventions, information was successfully provided individually to 3 to 11 clinicians per child before the child died. No harm was reported by parents as a result of participating; satisfaction and other benefits were reported. Clinicians reported moderate to strong satisfaction with the intervention.The communication intervention was feasible within hours of decision making, was acceptable and beneficial without harm to participating parents, and was acceptable and useful to clinicians in their care of families.

    View details for DOI 10.1089/jpm.2012.0006

    View details for Web of Science ID 000307095200014

    View details for PubMedID 22734685

    View details for PubMedCentralID PMC3396144

  • DEVELOPMENT OF A THERAPEUTIC ALGORITHM TO GUIDE CLINICIANS CONSIDERING PALLIATIVE SEDATION THERAPY IN PEDIATRIC PATIENTS AT THE END OF LIFE Johnson, L., Anghelescu, D., Faughnan, L., Hamilton, D., Baker, J. WILEY PERIODICALS, INC. 2012: 1063
  • Clinically Significant? Depends on Whom You Ask AMERICAN JOURNAL OF BIOETHICS Johnson, L., Church, C. L., Walsh, M. F., Baker, J. N. 2012; 12 (10): 18-20

    View details for DOI 10.1080/15265161.2012.699159

    View details for Web of Science ID 000308987300008

    View details for PubMedID 22974023

  • A PHASE I STUDY OF THE COMBINATION OF VANDETANIB AND DASATINIB ADMINISTERED DURING AND AFTER RADIOTHERAPY (RT) IN CHILDREN WITH DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG) Broniscer, A., Baker, S. D., Baker, J. N., Panandiker, A., Onar-Thomas, A., Chin, T. K., Merchant, T. E., Davidoff, A., Kaste, S. C., Gajjar, A., Stewart, C. F. OXFORD UNIV PRESS INC. 2011: 98
  • Genome-Wide Analyses Identify Recurrent Amplifications of Receptor Tyrosine Kinases and Cell-Cycle Regulatory Genes in Diffuse Intrinsic Pontine Glioma JOURNAL OF CLINICAL ONCOLOGY Paugh, B. S., Broniscer, A., Qu, C., Miller, C. P., Zhang, J., Tatevossian, R. G., Olson, J. M., Geyer, J., Chi, S. N., da Silva, N., Onar-Thomas, A., Baker, J. N., Gajjar, A., Ellison, D. W., Baker, S. J. 2011; 29 (30): 3999-4006

    Abstract

    Long-term survival for children with diffuse intrinsic pontine glioma (DIPG) is less than 10%, and new therapeutic targets are urgently required. We evaluated a large cohort of DIPGs to identify recurrent genomic abnormalities and gene expression signatures underlying DIPG.Single-nucleotide polymorphism arrays were used to compare the frequencies of genomic copy number abnormalities in 43 DIPGs and eight low-grade brainstem gliomas with data from adult and pediatric (non-DIPG) glioblastomas, and expression profiles were evaluated using gene expression arrays for 27 DIPGs, six low-grade brainstem gliomas, and 66 nonbrainstem low-grade gliomas.Frequencies of specific large-scale and focal imbalances varied significantly between DIPGs and nonbrainstem pediatric glioblastomas. Focal amplifications of genes within the receptor tyrosine kinase-Ras-phosphoinositide 3-kinase signaling pathway were found in 47% of DIPGs, the most common of which involved PDGFRA and MET. Thirty percent of DIPGs contained focal amplifications of cell-cycle regulatory genes controlling retinoblastoma protein (RB) phosphorylation, and 21% had concurrent amplification of genes from both pathways. Some tumors showed heterogeneity in amplification patterns. DIPGs showed distinct gene expression signatures related to developmental processes compared with nonbrainstem pediatric high-grade gliomas, whereas expression signatures of low-grade brainstem and nonbrainstem gliomas were similar.DIPGs comprise a molecularly related but distinct subgroup of pediatric gliomas. Genomic studies suggest that targeted inhibition of receptor tyrosine kinases and RB regulatory proteins may be useful therapies for DIPG.

    View details for DOI 10.1200/JCO.2011.35.5677

    View details for Web of Science ID 000296551700015

    View details for PubMedID 21931021

    View details for PubMedCentralID PMC3209696

  • Characterization, Treatment, and Outcome of Intracranial Neoplasms in the First 120 Days of Life JOURNAL OF CHILD NEUROLOGY Qaddoumi, I., Carey, S. S., Conklin, H., Jenkins, J., Sabin, N., Boop, F., Pai-Panandiker, A., Baker, J., Wright, K., Broniscer, A., Gajjar, A. 2011; 26 (8): 988-994

    Abstract

    Little is known about brain tumors in early infancy. Investigators reviewed the records of 27 patients (12 boys and 15 girls) diagnosed within 120 days of birth. The median age was 66 days (range, 0-110 days) at diagnosis. All patients underwent surgery; 18 received adjuvant chemotherapy, and 3 received adjuvant chemotherapy and radiation therapy. The median follow-up was 2.1 years (range, 0.2-21.6 years). At last encounter, 15 patients were alive, and 11 had no evidence of disease. Ten patients died of progressive disease, and 2 died of treatment-related complications. All survivors experienced late effects, including endocrine, neurologic, and cognitive deficits. Of the 13 patients who completed neurocognitive assessments, 7 had an IQ score less than 70. Children in whom brain tumors arise during early infancy can be cured with conventional therapy; however, contemporary approaches can adversely affect long-term function, and families need to be aware of these effects when making therapeutic decisions.

    View details for DOI 10.1177/0883073811401398

    View details for Web of Science ID 000293085400009

    View details for PubMedID 21532007

    View details for PubMedCentralID PMC3174527

  • Use of epidural and peripheral nerve blocks at the end of life in children and young adults with cancer: the collaboration between a pain service and a palliative care service PEDIATRIC ANESTHESIA Anghelescu, D. L., Faughnan, L. G., Baker, J. N., Yang, J., Kane, J. R. 2010; 20 (12): 1070-1077

    Abstract

    Clinicians may avoid continuous pain blocks in pediatric cancer patients at the end of life for fear of complications or of interfering with the desired location of death.To examine the impact of epidural or peripheral nerve catheters on pain control in children and young adults with cancer within the last 3 months of life.We retrospectively reviewed the medical records to assess pain scores, systemic opioid requirements, and impact on death at the preferred location.Ten patients (4.4-21.3 years of age), nine with solid tumors, one with lymphoma, had 14 devices (11 epidural, 3 peripheral nerve catheters) for a range of 3-81 days. Twelve of 13 catheters provided improvement by at least one of three criteria: improved mean pain scores at 24 h (8 of 13) and decreased opioid requirement at 24 h in nine cases and at day 5 in nine cases. Eight patients died in their preferred setting. Six patients had catheters (five epidural, one peripheral) until death, including two who died at home. In some cases, typical contraindications for indwelling catheters (spinal metastasis, vertebral fracture, thrombocytopenia, fever) were superseded by palliative care needs. We found no bleeding, infectious, or neurological complications.Our findings suggest that continuous catheter-delivered pain blockade at the end of life contributes to analgesia, moderates opioid requirements, and usually does not preclude death at the preferred location.

    View details for DOI 10.1111/j.1460-9592.2010.03449.x

    View details for Web of Science ID 000284485500002

    View details for PubMedID 21199115

    View details for PubMedCentralID PMC4403725

  • PHASE I STUDY OF VANDETANIB DURING AND AFTER RADIOTHERAPY IN CHILDREN WITH DIFFUSE INTRINSIC PONTINE GLIOMA Broniscer, A., Baker, J. N., Tagen, M., Onar-Thomas, A., Gilbertson, R. J., Davidoff, A. M., Pai-Panandiker, A., Leung, W., Chin, T. K., Stewart, C. F., Kocak, M., Rowland, C., Merchant, T. E., Kaste, S., Gajjar, A. OXFORD UNIV PRESS INC. 2010: 82-83
  • Phase I Study of Vandetanib During and After Radiotherapy in Children With Diffuse Intrinsic Pontine Glioma Broniscer, A., Baker, J. N., Tagen, M., Onar-Thomas, A., Gilbertson, R. J., Davidoff, A. M., Panandiker, A., Leung, W., Chin, T. K., Stewart, C. F., Kocak, M., Rowland, C., Merchant, T. E., Kaste, S. C., Gajjar, A. AMER SOC CLINICAL ONCOLOGY. 2010: 4762-4768

    Abstract

    To evaluate the safety, maximum-tolerated dose, pharmacokinetics, and pharmacodynamics of vandetanib, an oral vascular endothelial growth factor receptor 2 (VEGFR2) and epidermal growth factor receptor inhibitor, administered once daily during and after radiotherapy in children with newly diagnosed diffuse intrinsic pontine glioma.Radiotherapy was administered as 1.8-Gy fractions (total cumulative dose of 54 Gy). Vandetanib was administered concurrently with radiotherapy for a maximum of 2 years. Dose-limiting toxicities (DLTs) were evaluated during the first 6 weeks of therapy. Pharmacokinetic studies were obtained for all patients. Plasma angiogenic factors and VEGFR2 phosphorylation in mononuclear cells were analyzed before and during therapy.Twenty-one patients were administered 50 (n = 3), 65 (n = 3), 85 (n = 3), 110 (n = 6), and 145 mg/m(2) (n = 6) of vandetanib. Only one patient developed DLT (grade 3 diarrhea) at dosage level 5. An expanded cohort of patients were treated at dosage levels 4 (n = 10) and 5 (n = 4); two patients developed grade 4 hypertension and posterior reversible encephalopathy syndrome while also receiving high-dose dexamethasone. Despite significant interpatient variability, exposure to vandetanib increased with higher dosage levels. The bivariable analysis of vascular endothelial growth factor (VEGF) before and during therapy showed that patients with higher levels of VEGF before therapy had a longer progression-free survival (PFS; P = .022), whereas patients with increases in VEGF during treatment had a shorter PFS (P = .0015). VEGFR2 phosphorylation was inhibited on day 8 or 29 of therapy compared with baseline (P = .039).The recommended phase II dose of vandetanib in children is 145 mg/m(2) per day. Close monitoring and management of hypertension is required, particularly for patients receiving corticosteroids.

    View details for DOI 10.1200/JCO.2010.30.3545

    View details for Web of Science ID 000283585200030

    View details for PubMedID 20921456

    View details for PubMedCentralID PMC3020706

  • Prospective Collection of Tissue Samples at Autopsy in Children With Diffuse Intrinsic Pontine Glioma CANCER Broniscer, A., Baker, J. N., Baker, S. J., Chi, S. N., Geyer, J., Morris, E., Gajjar, A. 2010; 116 (19): 4632-4637

    Abstract

    Brain tissue obtained at autopsy has been used in research for non-oncologic disorders. However, to the best of the authors' knowledge, this tool has never been systematically used in large investigational studies for cancer. A prospective, multicenter study was conducted to assess the feasibility of tissue collection at autopsy and its suitability for molecular analyses in children with diffuse intrinsic pontine glioma.Tumor tissue was collected at the time of diagnosis, if clinically indicated, or at autopsy. Normal brain tissue was also collected at autopsy. The integrity of DNA and RNA was evaluated in all samples. Logistic data regarding autopsies were recorded. The feasibility of tissue collection at autopsy was assessed for patients treated at a single institution over a 43-month period.Tumor samples were collected at the time of diagnosis (n = 3) or at autopsy (n = 38) at 29 centers across the United States; samples were obtained at diagnosis and autopsy in 2 cases. The median interval from death to autopsy was 7.7 hours. DNA and RNA with minimal or partial degradation, which were suitable for genome-wide analysis, were obtained from 100% and 63% of tumor samples, respectively. At the coordinating institution, approximately 40% of parents consented to autopsy and 40% declined. During the study period, 12 autopsies were performed on patients who did not receive therapy at the coordinating center.Multicenter, biological studies based on tissue obtained at autopsy appear to be feasible in children with brain cancer. The current experience established a new paradigm for brain tissue collection, which may increase the potential for research studies in patients with cancer.

    View details for DOI 10.1002/cncr.25405

    View details for Web of Science ID 000282263300024

    View details for PubMedID 20589749

    View details for PubMedCentralID PMC2989604

  • Availability of palliative care services for children with cancer in economically diverse regions of the world EUROPEAN JOURNAL OF CANCER Delgado, E., Barfield, R. C., Baker, J. N., Hinds, P. S., Yang, J., Nambayan, A., Quintana, Y., Kane, J. R. 2010; 46 (12): 2260-2266

    Abstract

    We assessed the availability and quality of palliative care for children with cancer according to national income per capita.We surveyed physicians who care for children with cancer using the Cure4Kids website (http://www.cure4kids.org). Queries addressed oncology practice site; reimbursement; specialised palliative care, pain management and bereavement care; location of death; decision-making support and perceived quality of care. Responses were categorised by low-, middle- and high-income country (LIC, MIC and HIC).Of 262 completed questionnaires from 58 countries (response rate, 59.8%), 242 were evaluable (55%). Out-of-pocket payment for oncology (14.8%), palliative care (21.9%) and comfort care medications (24.3%) was most likely to be required in LIC (p<0.001). Availability of specialised palliative care services, pain management, bereavement care and institutional or national decision-making support was inversely related to income level. Availability of high-potency opioids (p=0.018) and adjuvant drugs (p=0.006) was significantly less likely in LIC. Physicians in LIC were significantly less likely than others to report high-quality pain control (p<0.001), non-pain symptom control (p=0.003) and emotional support (p=0.001); bereavement support (p=0.035); interdisciplinary care (p<0.001) and parental participation in decisions (p=0.013).Specialised palliative care services are unavailable to children with cancer in economically diverse regions, but particularly in LIC. Access to adequate palliation is associated with national income. Programme development strategies and collaborations less dependent on a single country's economy are suggested.

    View details for DOI 10.1016/j.ejca.2010.05.006

    View details for Web of Science ID 000281500800023

    View details for PubMedID 20541395

    View details for PubMedCentralID PMC2916078

  • Informed Consent for Pediatric Phase 1 Cancer Trials: Physicians' Perspectives CANCER Yap, T., Yamokoski, A. D., Hizlan, S., Zyzanski, S. J., Angiolillo, A. L., Rheingold, S. R., Baker, J. N., Kodish, E. D., Phase I Informed Consent Poic Res 2010; 116 (13): 3244-3250

    Abstract

    This study was conducted to gather pediatric oncologists' opinions about and suggestions for improvement of informed consent (IC) in pediatric phase 1 cancer trials.A questionnaire designed to elicit perspectives was distributed to 146 physicians at 6 participating institutions. A total of 103 completed surveys were returned for a 71% response rate.Pediatric oncologists believe providing information so families can decide about phase 1 study entry is the most important goal of the IC process (ICP). The majority of physicians (64%) report that they describe the phase 1 study without any attempt to influence parents' decisions. Several answers provided by physicians were associated with their gender and prior IC training. Male physicians were significantly more likely to endorse the no-attempt-to-influence approach, whereas female physicians were more likely to suggest to parents that other children will benefit from what is learned in phase 1 studies. Responses to an open-ended question provided 63 suggestions for improvement of the ICP, including document and training changes and tools to enhance physician-family communication.Pediatric oncologists tended to present phase 1 trials as an option rather than a strong recommendation and were reluctant to influence decisions of families about these studies. They believe most but not all parents understand key concepts involved in consent to this type of research, and had ample suggestions for how to improve the ICP. Future research and education efforts around this ethically challenging topic were warranted.

    View details for DOI 10.1002/cncr.25158

    View details for Web of Science ID 000279208900024

    View details for PubMedID 20564626

    View details for PubMedCentralID PMC2892009

  • THE IMPACT OF A CONSULT-BASED PALLIATIVE CARE TEAM ON PEDIATRIC NEURO-ONCOLOGY PATIENTS WHO DIED Baker, J. N., Singhal, S., Yang, J., Wang, C., Kane, J. R. OXFORD UNIV PRESS INC. 2010: II17
  • ASSESSING BEREAVED PARENTS' PERCEIVED PURPOSE, HOPES AND REGRETS FOR PARTICIPATING IN A PROSPECTIVE AUTOPSY SPECIMEN STUDY FOR THEIR CHILD WITH DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG) Baker, J. N., Windham, J., Hinds, P. S., Gattuso, J., Gajjar, P., West, N., Broniscer, A. OXFORD UNIV PRESS INC. 2010: II16
  • PHASE I STUDY OF VANDETANIB DURING AND AFTER RADIATION THERAPY (RT) IN CHILDREN WITH DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG) Broniscer, A., Baker, J. N., Tagen, M., Onar, A., Chin, T. K., Gilbertson, R. J., Pai-Panandiker, A., Davidoff, A., Kocak, M., Merchant, T. E., Leung, W., Kaste, S., Gajjar, A., Stewart, C. F. OXFORD UNIV PRESS INC. 2010: II10
  • PROSPECTIVE COLLECTION OF TISSUE SAMPLES OBTAINED AT AUTOPSY IN CHILDREN WITH DIFFUSE INTRINSIC PONTINE GLIOMA Broniscer, A., Baker, J. N., Baker, S. J., Chi, S. N., Geyer, J. R., Morris, E. B., Gajjar, A. OXFORD UNIV PRESS INC. 2010: II8
  • Factors That Distinguish Symptoms of Most Concern to Parents from Other Symptoms of Dying Children JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Pritchard, M., Burghen, E. A., Gattuso, J. S., West, N. K., Gajjar, P., Srivastava, D., Splint, S. L., Baker, J. N., Kane, J. R., Furman, W. L., Hinds, P. S. 2010; 39 (4): 627–36

    Abstract

    In a previous study, we conducted telephone interviews with parents 6 to 10 months after their child's death from cancer, using open-ended questions to identify the type and frequency of cancer-related symptoms that most concerned them during the last week of their child's life. Because the parents identified many clinically striking symptoms (n=109) that were not of most concern to them, we conducted a secondary analysis of these interviews (48 mothers and four fathers of 52 patients) to identify descriptive factors associated with the parents' level of concern. Six descriptive factors were associated with symptoms of most concern and 10 factors with symptoms not of most concern. Ten of these 16 factors occurred in both categories, indicating that clinicians should directly query parents to identify the symptoms that concern parents the most. Six factors differed between the two categories, and only one (the continuous distress caused by a symptom that is unrelieved) was unique to the category of symptoms of most concern. Five factors (symptom present for at least one week, symptom not seen as remarkable by the parent or causing no distress to the child, symptom well managed, symptom improved, and symptoms for which the parent felt adequately prepared) were unique to the category of symptoms not of most concern. By inquiring about symptoms of most concern and factors that influence parental concern, clinicians may be better able to direct care efforts to reduce patients' and parents' distress and support parents during the difficult end-of-life period.

    View details for PubMedID 20413052

  • "Trying to Be a Good Parent" As Defined By Interviews With Parents Who Made Phase I, Terminal Care, and Resuscitation Decisions for Their Children JOURNAL OF CLINICAL ONCOLOGY Hinds, P. S., Oakes, L. L., Hicks, J., Powell, B., Srivastava, D. K., Spunt, S. L., Harper, J., Baker, J. N., West, N. K., Furman, W. L. 2009; 27 (35): 5979-5985

    Abstract

    When a child's cancer progresses beyond current treatment capability, the parents are likely to participate in noncurative treatment decision making. One factor that helps parents to make these decisions and remain satisfied with them afterward is deciding as they believe a good parent would decide. Because being a good parent to a child with incurable cancer has not been formally defined, we conducted a descriptive study to develop such a definition.In face-to-face interviews, 62 parents who had made one of three decisions (enrollment on a phase I study, do not resuscitate status, or terminal care) for 58 patients responded to two open-ended questions about the definition of a good parent and about how clinicians could help them fulfill this role. For semantic content analysis of the interviews, a rater panel trained in this method independently coded all responses. Inter-rater reliability was excellent.Among the aspects of the definition qualitatively identified were making informed, unselfish decisions in the child's best interest, remaining at the child's side, showing the child that he is cherished, teaching the child to make good decisions, advocating for the child with the staff, and promoting the child's health. We also identified 15 clinician strategies that help parents be a part of making these decisions on behalf of a child with advanced cancer.The definition and the strategies may be used to guide clinicians in helping parents fulfill the good parent role and take comfort afterward in having acted as a good parent.

    View details for DOI 10.1200/JCO.2008.20.0204

    View details for Web of Science ID 000272652700022

    View details for PubMedID 19805693

    View details for PubMedCentralID PMC2793041

  • Bereaved Parents' Perceptions About When Their Child's Cancer-Related Death Would Occur JOURNAL OF PAIN AND SYMPTOM MANAGEMENT Pritchard, M., Srivastava, D. K., Okuma, J. O., Powell, B., Burghen, E., West, N. K., Gattuso, J. S., Spunt, S. L., Baker, J. N., Kane, J., Furman, W. L., Hinds, P. S. 2009; 38 (4): 561-567

    Abstract

    Parents of terminally ill children with cancer frequently ask clinicians when their child will die. Such information helps parents prepare for the child's death. To identify how parents perceived when their child's cancer-related death would occur, we conducted a secondary analysis of telephone interviews with 49 bereaved parents 6-10 months after their child's death to extract their descriptions of this occurrence. The parents knew in advance that their child was going to die, but they described when their child's death would occur in three different ways: anticipated (parents observed changes that alerted them that death was imminent; n=22, 52.4%), surprising (parents were surprised that their child died on that particular day; n=13, 31.0%), and overdue (parents had been waiting for the end of their child's apparent suffering; n=7, 16.7%). These categories did not differ by patients' diagnosis, sex, or location of death but differed slightly by symptom patterns. Parents who reported the occurrence of their child's death as surprising reported fewer symptom changes on the last day of their child's life, compared with the last week of life, than did the parents in the other two categories. These findings indicate that parents of children with terminal cancer can perceive when their child's death would occur very differently: Some are surprised, whereas others feel they have waited too long for their child's release from suffering. Clinicians can use these descriptions and the associated symptom patterns to help families prepare for their child's last week and last day.

    View details for DOI 10.1016/j.jpainsymman.2009.01.005

    View details for Web of Science ID 000271297000009

    View details for PubMedID 19822277

    View details for PubMedCentralID PMC2941143

  • Decision-making by Adolescents and Parents of Children With Cancer Regarding Health Research Participation PEDIATRICS Read, K., Fernandez, C., Gao, J., Strahlendorf, C., Moghrabi, A., Pentz, R., Barfield, R., Baker, J., Santor, D., Weijer, C., Kodish, E. 2009; 124 (3): 959-965

    Abstract

    Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer.This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research.Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01).AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials.

    View details for DOI 10.1542/peds.2008-2878

    View details for Web of Science ID 000269383100015

    View details for PubMedID 19706586

  • Providing Research Results to Participants: Attitudes and Needs of Adolescents and Parents of Children With Cancer JOURNAL OF CLINICAL ONCOLOGY Fernandez, C., Gao, J., Strahlendorf, C., Moghrabi, A., Pentz, R., Barfield, R., Baker, J., Santor, D., Weijer, C., Kodish, E. 2009; 27 (6): 878-883

    Abstract

    There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants.A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against providing results; and barriers to providing results.Four hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences.Parents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated.

    View details for DOI 10.1200/JCO.2008.18.5223

    View details for Web of Science ID 000263513000008

    View details for PubMedID 19164211

    View details for PubMedCentralID PMC2668636

  • Pain still lords over children JOURNAL OF PEDIATRICS Baker, J. N., Anghelescu, D. L., Kane, J. R. 2008; 152 (1): 6-8

    View details for DOI 10.1016/j.jpeds.2007.08.019

    View details for Web of Science ID 000252080100004

    View details for PubMedID 18154888

  • Please, I want to go home: ethical issues raised when considering choice of place of care in palliative care POSTGRADUATE MEDICAL JOURNAL Wheatley, V. J., Baker, J. 2007; 83 (984): 643-648

    Abstract

    Many palliative care patients would prefer to receive care, and to die, at home. Despite this many die in institutions. In response to this, politicians and charities have adopted policies aimed at increasing the opportunities for care and death at home. The need to discuss plans for discharge with most inpatients reinforces expectations of a choice of place of care. However, many palliative patients do not have a choice of care at home. This article will explore the circumstances in which patients are unable to choose home care and consider changes in clinical practice that can help to maximise choice. We shall argue that there is a distinction between the preferences of patients and the choices actually available to them. In attempting to make this distinction we advocate consideration of the balance between the ethical principles relevant to each case.

    View details for DOI 10.1136/pgmj.2007.058487

    View details for Web of Science ID 000249950300007

    View details for PubMedID 17916873

    View details for PubMedCentralID PMC2600129

  • Creating a palliative and end-of-life program in a cure-oriented pediatric setting: The zig-zag method JOURNAL OF PEDIATRIC ONCOLOGY NURSING Harper, J., Hinds, P. S., Baker, J. N., Hicks, J., Spunt, S. L., Razzouk, B. I. 2007; 24 (5): 246-254

    Abstract

    Children living with and dying of advanced-stage cancer suffer physically, emotionally, and spiritually. Relief of their suffering requires comprehensive, compassionate palliative and end-of-life (EoL) care.However, an EoL care program might appear inconsistent with the mission of a pediatric oncology research center committed to seeking cures. Here the authors describe the methods used to achieve full institutional commitment to their EoL care program and those used to build the program's philosophical, research, and educational foundations after they received approval. The authors convened 10 focus groups to solicit staff perceptions of the hospital's current palliative and EoL care. They also completed baseline medical record reviews of 145 patient records to identify key EoL characteristics. The authors then crafted a vision statement and a strategic plan, implemented new research protocols,and established publication and funding trajectories. They conclude that establishing a state-of-the-art palliative and EoL program in a cure-oriented pediatric setting is achievable via consensus building and recruitment of diverse institutional resources.

    View details for DOI 10.1177/1043454207303882

    View details for Web of Science ID 000249143400002

    View details for PubMedID 17827490

  • Key factors affecting dying children and their families. Journal of palliative medicine Hinds, P. S., Schum, L., Baker, J. N., Wolfe, J. 2005; 8 Suppl 1: S70-8

    Abstract

    The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.

    View details for DOI 10.1089/jpm.2005.8.s-70

    View details for PubMedID 16499471