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.
Professor - University Medical Line, Pediatrics
Children with cancer at the end of life in a middle-income country: integrated pediatric palliative care improves outcomes.
BMC palliative care
2024; 23 (1): 31
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
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
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
2023; 146: 102701
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
2023; 66 (3): 248-257
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
The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review.
Journal of pain and symptom management
2021; 61 (5): 1060-1079.e2
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
NCCN Guidelines Insights: Palliative Care, Version 2.2021.
Journal of the National Comprehensive Cancer Network : JNCCN
2021; 19 (7): 780-788
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
- The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review JOURNAL OF PAIN AND SYMPTOM MANAGEMENT 2020; 61 (5): 1060-+
Palliative Care Version 1.2016
JOURNAL OF THE NATIONAL COMPREHENSIVE CANCER NETWORK
2016; 14 (1): 82-113
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
Palliative Care, Version 1.2014 Featured Updates to the NCCN Guidelines
JOURNAL OF THE NATIONAL COMPREHENSIVE CANCER NETWORK
2014; 12 (10): 1379-1388
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