Annemarie Jagielo
Casual - Non-Exempt, Psych/General Psychiatry and Psychology (Adult)
Current Role at Stanford
Doctoral Candidate, Clinical Psychology, PGSP-Stanford PsyD Consortium
All Publications
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Adding Virtual Reality Mindful Exposure Therapy to a Cancer Center's Tobacco Treatment Offerings: Feasibility and Acceptability Single-Group Pilot Study.
JMIR formative research
2024; 8: e54817
Abstract
Smoking contributes to 1 in 3 cancer deaths. At the Stanford Cancer Center, tobacco cessation medication management and counseling are provided as a covered benefit. Patients charted as using tobacco are contacted by a tobacco treatment specialist and offered cessation services. As a novel addition, this study examined the acceptability of a virtual reality (VR) mindful exposure therapy app for quitting smoking called MindCotine.The objective of this study was to determine the feasibility and acceptability of offering 6 weeks of MindCotine treatment as a part of Stanford's Tobacco Treatment Services for patients seen for cancer care.As part of a single-group pilot study, the MindCotine VR program was offered to English- or Spanish-speaking patients interested in quitting smoking. Given the visual interface, epilepsy was a medical exclusion. Viewed from a smartphone with an attachable VR headset, MindCotine provides a digital environment with audiovisual content guiding mindfulness exercises (eg, breathing techniques, body awareness, and thought recognition), text-based coaching, and cognitive behavioral therapy-based self-reflections for quitting smoking. Interested patients providing informed consent were mailed a MindCotine headset and asked to use the app for 10+ minutes a day. At the end of 6 weeks, participants completed a feedback survey.Of the 357 patients reached by the tobacco treatment specialist, 62 (17.3%) were ineligible, 190 (53.2%) were not interested in tobacco treatment services, and 78 (21.8%) preferred other tobacco treatment services. Among the 105 eligible and interested in assistance with quitting, 27 (25.7%) were interested in MindCotine, of whom 20 completed the informed consent, 9 used the program, and 8 completed their end-of-treatment survey. Participants using MindCotine completed, on average, 13 (SD 20.2) program activities, 19 (SD 26) journal records, and 11 (SD 12.3) coaching engagements. Of the 9 participants who used MindCotine, 4 (44%) reported some dizziness with app use that resolved and 7 (78%) would recommend MindCotine to a friend. In total, 2 participants quit tobacco (22.2% reporting, 10% overall), 2 others reduced their smoking by 50% or more, and 2 quit for 24 hours and then relapsed.In a feasibility and acceptability pilot study of a novel VR tobacco treatment app offered to patients at a cancer center, 4 of 9 (44%) reporting and 4 of 20 (20%) overall substantially reduced or quit using tobacco after 6 weeks and most would recommend the app to others. Further testing on a larger sample is warranted.ClinicalTrials.gov NCT05220254; https://clinicaltrials.gov/study/NCT05220254.
View details for DOI 10.2196/54817
View details for PubMedID 39042439
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Cancer and Fertility: Exploring Uncertainty Management Strategies of Young Adult Female Survivors.
Journal of adolescent and young adult oncology
2024
Abstract
This study describes young adult female (YA-F) cancer survivors' uncertainty management strategies related to fertility/family building. Cross-sectional data were analyzed (n = 98). Participants reported higher rates of seeking information to reduce fertility-related uncertainty (M = 5.48, ±1.03), than avoiding information (M = 4.77, ±1.29). Controlling for relevant covariates (i.e., reproductive distress, household income, and health literacy), greater avoidance was related to higher reproductive distress (β = 0.293, p = 0.011) and lower household income (β = -0.281, p = 0.047). Evidence suggests that some survivors may avoid fertility-related information to manage uncertainty and distress, which may impact family-building success. Fertility avoidance may be an important target of intervention.
View details for DOI 10.1089/jayao.2024.0015
View details for PubMedID 38904117
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Group Coping Intervention in Patients With Chronic Graft-Versus-Host Disease: A Pilot Randomized Clinical Trial.
Journal of the National Comprehensive Cancer Network : JNCCN
2024; 22 (1): 34-42
Abstract
More than half the long-term survivors of allogeneic hematopoietic cell transplantation develop chronic graft-versus-host disease (GVHD), a debilitating inflammatory syndrome. Supportive interventions to assist survivors in coping with chronic GVHD are critically needed.We conducted a pilot randomized clinical trial of a multidisciplinary group intervention (Horizons Program; n=39) versus minimally enhanced usual care (n=41) for patients with moderate or severe chronic GVHD. Horizons participants received 8 weekly sessions about GVHD and coping co-led by a transplant clinician and a behavioral health expert via a secure videoconferencing platform. Participants completed the following surveys before randomization, at 10 weeks, and at 18 weeks: Functional Assessment of Cancer Therapy-Bone Marrow Transplant Scale (FACT-BMT) for quality of life (QoL), Lee Symptom Scale for symptom burden, and Hospital Anxiety and Depression Scale-Depression Symptoms (HADS) for mood. The primary endpoint was feasibility (≥50% enrollment, ≥80% attendance in half the sessions for the Horizons arm only, and ≥80% retention). We also explored preliminary efficacy of the Horizons intervention on changes in patient-reported outcomes with linear mixed effects models and estimates of effect size at 10 weeks.We enrolled and registered 80 (67.2%) of 119 eligible patients (mean age, 62 years; 48.8% female). Of the participants in the Horizons Program, 84.6% attended at least half the sessions. Of registered participants, 91.3% completed assessment follow-ups (Horizons, 35/39 [89.7%]; minimally enhanced usual care, 38/41 [92.7%]). Horizons participants reported improvements in QoL (b = 2.24; d=0.53), anxiety symptoms (b = -0.10; d=0.34), and depression symptoms (b = -0.71; d=0.44) compared with participants who received minimally enhanced usual care.Participation in a multidisciplinary group intervention study was feasible for patients with chronic GVHD, with promising signals for improving QoL and mood. A full-scale efficacy trial is needed to confirm effects on patient-reported outcomes.
View details for DOI 10.6004/jnccn.2023.7080
View details for PubMedID 38394783
View details for PubMedCentralID PMC11112519
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Predictors of Patient Engagement in Telehealth-Delivered Tobacco Cessation Treatment during the COVID-19 Pandemic.
International journal of environmental research and public health
2024; 21 (2)
Abstract
Smoking causes one in three cancer deaths and may worsen COVID-19 outcomes. Telehealth tobacco cessation treatment is offered as a covered benefit for patients at the Stanford Cancer Center. We examined predictors of engagement during the COVID-19 pandemic. Data were abstracted from the Electronic Health Record between 3/17/20 (start of pandemic shelter-in-place) and 9/20/22, including patient tobacco use, demographics, and engagement in cessation treatment. Importance of quitting tobacco was obtained for a subset (53%). During the first 2.5 years of the pandemic, 2595 patients were identified as recently using tobacco, and 1571 patients were contacted (61%). Of the 1313 patients still using tobacco (40% women, mean age 59, 66% White, 13% Hispanic), 448 (34%) enrolled in treatment. Patient engagement was greater in pandemic year 1 (42%) than in year 2 (28%) and year 3 (19%). Women (41%) engaged more than men (30%). Patients aged 36-45 (39%), 46-55 (43%), 56-65 (37%), and 66-75 (33%) engaged more than patients aged 18-35 (18%) and >75 (21%). Hispanic/Latinx patients (42%) engaged more than non-Hispanic/Latinx patients (33%). Engagement was not statistically significantly related to patient race. Perceived importance of quitting tobacco was significantly lower in pandemic year 1 than year 2 or 3. Nearly one in three cancer patients engaged in telehealth cessation treatment during the COVID-19 pandemic. Engagement was greater earlier in the pandemic, among women, Hispanic/Latinx individuals, and patients aged 36 to 75. Sheltering-in-place, rather than greater perceived risk, may have facilitated patient engagement in tobacco cessation treatment.
View details for DOI 10.3390/ijerph21020131
View details for PubMedID 38397622
View details for PubMedCentralID PMC10887648
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Circadian, hormonal, and sleep rhythms: effects on cancer progression implications for treatment.
Frontiers in oncology
2023; 13: 1269378
Abstract
Circadian, hormonal, and sleep rhythm disruptions are commonly experienced concerns among cancer patients throughout the cancer care continuum. This review aims to summarize the existing literature on circadian, hormonal, and sleep rhythms in the oncological population, focusing on circadian disruption and physiological and psychological abnormalities, disease progression, and chronomodulated treatment approaches. The findings demonstrate that subjectively and objectively measured circadian rhythm disruption is associated with adverse mental health and disease outcomes in patients with cancer. Chronomodulated chemotherapy, light therapy, cognitive behavioral therapy for insomnia, and physical activity have shown evidence of effectiveness in improving sleep, and occasionally, disease outcomes.
View details for DOI 10.3389/fonc.2023.1269378
View details for PubMedID 37746277
View details for PubMedCentralID PMC10514358
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Factors Associated with Health Care Utilization at the End of Life for Patients with Acute Myeloid Leukemia.
Journal of palliative medicine
2022; 25 (5): 749-756
Abstract
Background: Patients (≥60 years) with acute myeloid leukemia (AML) often receive intense health care utilization at the end of life (EOL). However, factors associated with their health care use at the EOL are unknown. Methods: We conducted a secondary analysis of 168 deceased patients with AML within the United States. We assessed quality of life (QOL) (Functional-Assessment-Cancer-Therapy-Leukemia), and psychological distress (Hospital-Anxiety-and-Depression Scale [HADS]; Patient-Health-Questionnaire-9 [PHQ-9]) at diagnosis. We used multivariable logistic regression models to examine the association between patient-reported factors and the following outcomes: (1) hospitalizations in the last 7 days of life, (2) receipt of chemotherapy in the last 30 days of life, and (3) hospice utilization. Results: About 66.7% (110/165) were hospitalized in the last 7 days of life, 51.8% (71/137) received chemotherapy in the last 30 days of life, and 40.7% (70/168) utilized hospice. In multivariable models, higher education (odds ratio [OR] = 1.54, p = 0.006) and elevated baseline depression symptoms (PHQ-9: OR = 1.09, p = 0.028) were associated with higher odds of hospitalization in the last seven days of life, while higher baseline QOL (OR = 0.98, p = 0.009) was associated with lower odds of hospitalization at the EOL. Higher baseline depression symptoms were associated with receipt of chemotherapy at the EOL (HADS-Depression: OR = 1.10, p = 0.042). Higher education was associated with lower hospice utilization (OR = 0.356, p = 0.024). Conclusions: Patients with AML who are more educated, with higher baseline depression symptoms and lower QOL, were more likely to experience high health care utilization at the EOL. These populations may benefit from interventions to optimize the quality of their EOL care.
View details for DOI 10.1089/jpm.2021.0249
View details for PubMedID 34861118
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Palliative care for patients undergoing stem cell transplant: intervention components and supportive care measures.
Bone marrow transplantation
2021; 56 (8): 1971-1977
Abstract
An inpatient palliative care intervention during HCT led to improvement in patient QOL and mood. We sought to describe components of the intervention, investigate differences in supportive care practices by treatment arm, and explore whether these differences mediated the impact of the intervention on patient QOL and mood. We conducted a secondary analysis of a randomized trial investigating inpatient palliative care integrated with transplant care versus standard transplant care for HCT recipients. Palliative care clinicians completed weekly surveys to describe topics addressed during visits. We extracted use of supportive care medications from the medical record. Participants completed QOL and mood assessments at baseline and two weeks post-HCT. Causal mediation assessed whether differences in supportive care practices mediated the impact of the intervention on patient-reported outcomes. A total of 160 HCT recipients participated. Palliative care visits most frequently focused on managing symptoms and coping with HCT. Patients randomized to the intervention were more likely to use Patient-Controlled Analgesia (PCA) (32.1% vs. 15.2%, p = 0.02) and atypical antipsychotics (35.8% vs. 17.7%, p = 0.01). Neither PCA nor atypical antipsychotics mediated the effect of the intervention on patient-reported outcomes. Future work to explore mechanisms by which the palliative care intervention improves QOL and mood is needed.
View details for DOI 10.1038/s41409-021-01281-2
View details for PubMedID 33824441
View details for PubMedCentralID PMC9245444
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Posttraumatic stress disorder symptoms in patients with acute myeloid leukemia.
Cancer
2021; 127 (14): 2500-2506
Abstract
Patients with acute myeloid leukemia (AML) receiving intensive chemotherapy face a life-threatening illness, isolating hospitalization, and substantial physical and psychological symptoms. However, data are limited regarding risk factors of posttraumatic stress disorder (PTSD) symptoms in this population.The authors conducted a secondary analysis of data from 160 patients with high-risk AML who were enrolled in a supportive care trial. The PTSD Checklist-Civilian Version was used to assess PTSD symptoms at 1 month after AML diagnosis. The Brief COPE and the Functional Assessment of Cancer Therapy-Leukemia were to assess coping and quality of life (QOL), respectively. In addition, multivariate regression models were constructed to assess the relation between PTSD symptoms and baseline sociodemographic factors, coping, and QOL.Twenty-eight percent of patients reported PTSD symptoms, describing high rates of intrusion, avoidance, and hypervigiliance. Baseline sociodemographic factors significantly associated with PTSD symptoms were age (B = -0.26; P = .002), race (B = -8.78; P = .004), and postgraduate education (B = -6.30; P = .029). Higher baseline QOL (B = -0.37; P ≤ .001) and less decline in QOL during hospitalization (B = -0.05; P = .224) were associated with fewer PTSD symptoms. Approach-oriented coping (B = -0.92; P = .001) was associated with fewer PTSD symptoms, whereas avoidant coping (B = 2.42; P ≤ .001) was associated with higher PTSD symptoms.A substantial proportion of patients with AML report clinically significant PTSD symptoms 1 month after initiating intensive chemotherapy. Patients' baseline QOL, coping strategies, and extent of QOL decline during hospitalization emerge as important risk factors for PTSD, underscoring the need for supportive oncology interventions to reduce the risk of PTSD in this population.
View details for DOI 10.1002/cncr.33524
View details for PubMedID 33764526
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Association Between Baseline Patient-Reported Outcomes and Complications of Hematopoietic Stem Cell Transplantation.
Transplantation and cellular therapy
2021; 27 (6): 496.e1-496.e5
Abstract
Hematopoietic cell transplantation (HCT) is a potentially curative therapy for hematologic malignancies, but it often results in significant toxicities and impaired quality of life (QOL). Although the value of patient-reported outcomes (PROs) is increasingly recognized in HCT, data are limited regarding the relationship between PROs and HCT complications. We conducted a secondary data analysis of 250 patients who were hospitalized for autologous or allogeneic HCT at Massachusetts General Hospital from 2011 through 2016. We assessed QOL (Functional Assessment of Cancer Therapy-General), mood (Hospital Anxiety and Depression Scale), and fatigue (FACT-Fatigue) at baseline. We abstracted from the Electronic Health Record (1) hospitalization during the first 100 days after HCT, (2) days alive and out of the hospital in the first 100 days after HCT, and (3) cumulative incidence of acute graft-versus-host disease (GVHD) among allogeneic HCT recipients. We assessed the association of baseline PROs with HCT complications using multivariable models adjusting for patient and transplant characteristics. Overall, 44.4% (111/250) of patients underwent an autologous HCT, 25.2% (63/250) received a myeloablative allogeneic HCT, and 30.4% (76/250) underwent a reduced-intensity allogeneic HCT. In multivariable logistic regression, higher anxiety (odds ratio [OR] = 1.14, P = .004) was associated with higher likelihood of rehospitalization within 100 days after HCT. In multivariable Poisson regression, lower fatigue (β = 0.003, P = .015) was associated with increased days alive and out of the hospital in the first 100 days post-HCT. In multivariable logistic regression, lower baseline QOL (OR = 0.97, P = .034), higher fatigue (OR = 0.95, P = .004), and higher depression (OR = 1.15, P = .020) were associated with increased likelihood of acute GVHD. Baseline PROs are associated with health care utilization after HCT and risk of acute GVHD in allogeneic HCT recipients. These findings underscore the potential utility of pretransplantation PROs as important prognostic factors for HCT.
View details for DOI 10.1016/j.jtct.2021.02.029
View details for PubMedID 33789836
View details for PubMedCentralID PMC10637282
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Anxiety and Depression Symptoms in Caregivers Prior to Hematopoietic Stem Cell Transplantation (HCT).
Transplantation and cellular therapy
2021; 27 (6): 517.e1-517.e5
Abstract
Family and friends caring for hematopoietic stem cell transplantation (HCT) recipients experience substantial disruptions in daily life as they prepare for transplant. These disruptions may increase their psychological distress, yet little research has described the extent of this distress. The goals of the present study were to characterize rates of anxiety and depression symptoms immediately prior to HCT and their relationship with modifiable caregiving domains. We conducted a secondary analysis of cross-sectional data of caregivers of patients undergoing HCT. Caregivers completed self-report measures to assess 8 domains of caregiving (Caregiver Oncology Quality of Life Questionnaire) and anxiety and depression symptoms (Hospital Anxiety and Depression Scale [HADS]) prior to transplant. Scores ≥8 on the HADS anxiety and depression subscales signified clinically significant symptoms. We used multivariable regression models adjusting for age, sex, caregiver relationship, and HCT type to examine the associations between caregiving domains and anxiety and depression symptoms. We enrolled 193 caregivers (median age = 60 years, 70.0% female, 52.3% allogeneic transplant). A majority of participants were providing care for a spouse (79.8%), followed by a child (7.8%) or parent (5.2%). On average, caregivers reported more anxiety (mean = 7.04, SD = 3.94) than depression symptoms (mean = 4.18, SD = 3.49), with 46.6% and 16.1% endorsing clinically significant anxiety and depression symptoms, respectively. Caregiver anxiety was associated with worse physical well-being, less leisure time, and poorer coping (Ps < .05). Caregiver depression symptoms were associated with worse physical well-being and less leisure time (Ps < .05). Caregivers of HCT recipients experience substantial psychological distress, particularly anxiety, prior to transplant. This distress is linked to modifiable caregiving domains. Study findings identify possible targets for psychosocial interventions aimed at managing caregiver anxiety and depression symptoms as well as highlight the need for intervention early during the course of transplant.
View details for DOI 10.1016/j.jtct.2021.03.002
View details for PubMedID 33812804
View details for PubMedCentralID PMC8217210
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Clinical Outcomes of Patients Hospitalized with Coronavirus Disease 2019 (COVID-19) in Boston.
Journal of general internal medicine
2021; 36 (5): 1285-1291
Abstract
Outcomes of hospitalized patients with COVID-19 have been described in health systems overwhelmed with a surge of cases. However, studies examining outcomes of patients admitted to hospitals not in crisis are lacking.To describe clinical characteristic and outcomes of all patients with COVID-19 who are admitted to hospitals not in crisis, and factors associated with mortality in this population.A retrospective analysis PARTICIPANTS: In total, 470 consecutive patients with COVID-19 requiring hospitalization in one health system in Boston from January 1, 2020 to April 15, 2020.We collected clinical outcomes during hospitalization including intensive care unit (ICU) admission, receipt of mechanical ventilation, and vasopressors. We utilized multivariable logistic regression models to examine factors associated with mortality.A total of 470 patients (median age 66 [range 23-98], 54.0% male) were included. The most common comorbidities were diabetes (38.5%, 181/470) and obesity (41.3%, 194/470). On admission, 41.9% (197/470) of patients were febrile and 60.6% (285/470) required supplemental oxygen. During hospitalization, 37.9% (178/470) were admitted to the ICU, 33.6% (158/470) received mechanical ventilation, 29.4% (138/470) received vasopressors, 16.4% (77/470) reported limitations on their desire for life-sustaining therapies such as intubation and cardiopulmonary resuscitation, and 25.1% (118/470) died. Among those admitted to the ICU (N=178), the median number of days on the ventilator was 10 days (IQR 1-29), and 58.4% (104/178) were discharged alive. Older age (OR=1.04, P<0.001), male sex (OR=2.14, P=0.007), higher comorbidities (OR=1.20, P=0.001), higher lactate dehydrogenase on admission (2nd tertile: OR=4.07, P<0.001; 3rd tertile: OR=8.04, P<0.001), and the need for supplemental oxygen on admission (OR=2.17, P=0.014) were all associated with higher mortality.The majority of hospitalized patients with COVID-19 and those who received mechanical ventilation survived. These data highlight the need to examine public health and system factors that contribute to improved outcomes for this population.
View details for DOI 10.1007/s11606-021-06622-x
View details for PubMedID 33629266
View details for PubMedCentralID PMC7904295
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Post-Traumatic Stress Symptoms in Hematopoietic Stem Cell Transplant Recipients.
Transplantation and cellular therapy
2021; 27 (4): 341.e1-341.e6
Abstract
Hematopoietic stem cell transplantation (HCT) is an intensive and potentially curative therapy for patients with hematologic malignancies. Patients admitted for HCT experience a prolonged, isolating hospitalization and endure substantial physical and psychological symptoms. However, there is a paucity of research on the impact of HCT on post-traumatic stress disorder (PTSD) symptoms in transplant recipients. This secondary analysis of 250 patients who underwent autologous and allogeneic HCT examined PTSD using the PTSD Checklist-Civilian measured at 6 months after HCT. We used the Functional Assessment of Cancer Therapy-Bone Marrow Transplant, and the Hospital Anxiety and Depression Scale to assess quality of life (QOL) and depression and anxiety symptoms at the time of admission for HCT, week 2 during hospitalization, and 6 months after HCT. We used multivariate regression models to assess factors associated with PTSD symptoms. Given collinearity between QOL, depression, and anxiety symptoms, we modeled these separately. The rate of clinically significant PTSD symptoms at 6 months after HCT was 18.9% (39/206). Participants with clinically significant PTSD symptoms experienced hypervigilance (92.3%), avoidance (92.3%), and intrusion (76.9%) symptoms. Among patients without clinically significant PTSD symptoms, 24.5% had clinically significant hypervigilance symptoms and 13.7% had clinically significant avoidance symptoms. Lower QOL at time of HCT admission (B = -0.04, P = .004) and being single (B = -3.35, P = .027) were associated with higher PTSD symptoms at 6 months after HCT. Higher anxiety at time of HCT admission (B = 1.34, P <.001), change in anxiety during HCT hospitalization (B = 0.59, P =.006), and being single (B = -3.50, P = .017) were associated with higher PTSD symptoms at 6 months. In a separate model using depression, younger age (B = -0.13, P = .017), being single (B = -3.58, P = .018), and higher baseline depression symptoms were also associated with higher PTSD symptoms at 6 months (B = 0.97, P < .001). Approximately one fifth of patients undergoing HCT experience clinically significant PTSD symptoms at 6 months after transplantation. The prevalence of hypervigilance and avoidance symptoms are notable even among patients who do not have clinically significant PTSD symptoms. Interventions to prevent and treat PTSD symptoms in HCT recipients are clearly warranted.
View details for DOI 10.1016/j.jtct.2021.01.011
View details for PubMedID 33836886
View details for PubMedCentralID PMC10636532
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Psychological Distress in Bereaved Caregivers of Patients With Advanced Cancer.
Journal of pain and symptom management
2021; 61 (3): 488-494
Abstract
Individuals caring for patients with advanced cancer (caregivers) experience psychological distress during the patient's illness course. However, data on the prevalence of bereaved caregivers' psychological distress and its relationship with the quality of patient's end of life (EOL) care are limited.To describe rates of depression and anxiety symptoms in bereaved caregivers of patients with advanced cancer and to understand the relationship between these outcomes and patient distress at the EOL.We conducted a secondary analysis of 168 caregivers enrolled in a supportive care trial for patients with incurable lung and gastrointestinal cancers and their caregivers. We used the Hospital Anxiety and Depression Scale to assess caregivers' depression and anxiety symptoms at three months after the patient's death. Caregivers also rated the patient's physical and psychological distress in the last week of life on a 10-point scale three months after the patient death. We used linear regression adjusting for caregiver age, sex, randomization, and cancer type to explore the relationship between bereaved caregivers' depression and anxiety symptoms and their ratings of physical and psychological distress in patients at the EOL.Of the 168 bereaved caregivers, 30.4% (n = 51) and 43.4% (n = 73) reported clinically significant depression and anxiety symptoms, respectively. Caregiver ratings of worse physical (B = 0.32; P = 0.009) and psychological (B = 0.50; P < 0.001) distress experienced by the patient at the EOL were associated with worse depression symptoms in bereaved caregivers. Only caregiver rating of worse psychological distress experienced by the patient at the EOL (B = 0.42; P < 0.001) was associated with worse bereaved caregivers' anxiety symptoms.Many bereaved caregivers of patients with advanced cancer experience symptoms of depression and anxiety, which are associated with their perceptions of distress in their loved ones at the EOL.
View details for DOI 10.1016/j.jpainsymman.2020.08.028
View details for PubMedID 32882355
View details for PubMedCentralID PMC7914132
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Development of a Prognostic Awareness Impact Scale for Patients with Advanced Cancer.
Journal of palliative medicine
2021
Abstract
Background: No reliable instruments exist to measure prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer. Methods: We developed the Prognostic Awareness Impact Scale (PAIS) using a qualitative approach. During phase 1, we convened a working group with a transdisciplinary team of clinicians from oncology (n = 2), psychology (n = 2), psychiatry (n = 1), palliative care (n = 3), and survey development (n = 1) to identify key domains of PAIS. Using a consensus-driven process, the team generated an item bank for each domain. During phase 2, we conducted cognitive interviews with 39 patients with advanced cancer to assess the understandability of the PAIS. Results: The working group developed a conceptual framework for PAIS, identifying three domains: (1) cognitive understanding of prognosis (capacity to understand intellectually one's prognosis), (2) emotional coping (capacity to process prognostic uncertainty and terminal prognosis), and (3) adaptive response (capacity to use prognostic awareness to inform life decisions). Cognitive interviews revealed that patients had an accurate understanding of most PAIS items. Patients reported difficulty with binary response options for questions pertaining to emotional coping. They expressed difficulty answering numerous questions regarding their cognitive understanding of their prognosis. We revised the PAIS by (1) replacing binary response options with ordinal agreement scales; and (2) reducing the number of items focused on cognitive understanding of prognosis. Conclusion: We developed a conceptual framework to capture prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer using the PAIS. Future work should focus on validating the PAIS by testing its psychometric properties.
View details for DOI 10.1089/jpm.2021.0238
View details for PubMedID 34637630
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Enhanced coping and self-efficacy in caregivers of stem cell transplant recipients: Identifying mechanisms of a multimodal psychosocial intervention.
Cancer
2020; 126 (24): 5337-5346
Abstract
In a recent trial, a 6-session intervention (BMT-CARE) integrating medical information with cognitive-behavioral strategies improved quality of life (QOL), mood, coping skills, and self-efficacy for family/friend caregivers of hematopoietic stem cell transplantation (HCT) recipients. This study examined whether improvements in coping and self-efficacy mediated the intervention effects on QOL and mood.From December 2017 to April 2019, 100 caregivers of HCT recipients were enrolled into a randomized clinical trial of BMT-CARE versus usual care. Caregivers completed self-report measures of QOL (CareGiver Oncology Quality of Life questionnaire), depression and anxiety symptoms (Hospital Anxiety and Depression Scale), coping skills (Measure of Current Status), and self-efficacy (Cancer Self-Efficacy Scale-Transplant) at enrollment (before HCT) and 60 days after HCT. Causal mediation regression models were used to examine whether changes in coping and self-efficacy mediated intervention effects on QOL as well as depression and anxiety symptoms.Improvements in 60-day QOL in patients assigned to BMT-CARE were partially mediated by improved coping and self-efficacy (indirect effect, 6.93; SE, 1.85; 95% CI, 3.71-11.05). Similarly, reductions in 60-day depression and anxiety symptoms were partially mediated by improved coping and self-efficacy (indirect effect for depression, -1.19; SE, 0.42; 95% CI, -2.23 to -0.53; indirect effect for anxiety, -1.46; SE, 0.55; 95% CI, -2.52 to -0.43). Combined improvements in coping and self-efficacy accounted for 67%, 80%, and 39% of the total intervention effects on QOL and depression and anxiety symptoms, respectively.Coping and self-efficacy are essential components of a brief psychosocial intervention that improves QOL and mood for caregivers of HCT recipients during the acute recovery period.A 6-session program (BMT-CARE) focused on providing medical information, caregiving skills, and self-care and coping strategies has been previously reported to improve the quality of life and mood of caregivers of hematopoietic stem cell transplantation recipients in comparison with caregivers who receive care as usual. Using statistical models, this study suggests that learning coping skills and improving self-efficacy are the most essential components of this program that likely lead to better quality of life and mood for caregivers.
View details for DOI 10.1002/cncr.33191
View details for PubMedID 33026658
View details for PubMedCentralID PMC7950641
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Multimodal psychosocial intervention for family caregivers of patients undergoing hematopoietic stem cell transplantation: A randomized clinical trial.
Cancer
2020; 126 (8): 1758-1765
Abstract
Caregivers of patients undergoing hematopoietic stem cell transplantation (HCT) experience an immense caregiving burden before, during, and after HCT.We conducted an unblinded, randomized trial of a psychosocial intervention (BMT-CARE) for caregivers of patients undergoing autologous and allogeneic HCT at Massachusetts General Hospital. Caregivers were randomly assigned to BMT-CARE or usual care. BMT-CARE was tailored to the HCT trajectory and integrated treatment-related education and self-care with cognitive-behavioral skills to promote coping. Caregivers assigned to BMT-CARE met with a trained interventionist (a psychologist or a social worker) in person, via telephone, or via videoconferencing for 6 sessions starting before HCT and continuing up to day +60 after HCT. The primary endpoint was feasibility, which was defined as at least 60% of eligible caregivers enrolling and completing 50% or more of the intervention sessions. We assesed caregiver quality of life (QOL; Caregiver Oncology Quality of Life Questionnaire), caregiving burden (Caregiver Reaction Assessment), psychological distress (Hospital Anxiety and Depression Scale), self-efficacy (Cancer Self-Efficacy Scale-Transplant), and coping (Measures of Current Status) at baseline and 30 and 60 days after HCT. We used mixed linear effect models to assess the effect of BMT-CARE on outcomes longitudinally.We enrolled 72.5% of eligible caregivers (100 of 138), and 80% attended 50% or more of the intervention sessions. Caregivers randomized to BMT-CARE reported improved QOL (B = 6.11; 95% CI, 3.50-8.71; P < .001), reduced caregiving burden (B = -6.02; 95% CI, -8.49 to -3.55; P < .001), lower anxiety (B = -2.18; 95% CI, -3.07 to -1.28; P < .001) and depression symptoms (B = -1.23; 95% CI, -1.92 to -0.54; P < .001), and improved self-efficacy (B = 7.22; 95% CI, 2.40-12.03; P = .003) and coping skills (B = 4.83; 95% CI, 3.04-6.94; P < .001) in comparison with the usual-care group.A brief multimodal psychosocial intervention tailored for caregivers of HCT recipients is feasible and may improve QOL, mood, coping, and self-efficacy while reducing the caregiving burden during the acute HCT period.
View details for DOI 10.1002/cncr.32680
View details for PubMedID 31899552
View details for PubMedCentralID PMC7103553