BACKGROUND:Patients undergoing bone marrow transplantation (BMT) experience significant physical and psychological symptoms. Scalable psychosocial interventions to reduce distress and improve quality of life (QoL) are limited. Virtual reality (VR), with its 3-dimensional capabilities, offers a novel, scalable, patient-centered modality to address these needs. METHODS:We randomized adult patients with hematologic malignancies undergoing autologous or allogeneic BMT to receive either a VR supportive care intervention (BMT-VR) or usual care during hospitalization. BMT-VR consists of 6 modules focused on: (1) psychoeducation and managing expectations; (2) psychosocial skill-building to promote coping; and (3) strategies to facilitate acceptance while facing uncertainty. The primary endpoint was feasibility (≥60% enrollment and ≥60% completion of ≥4 of 6 modules). Secondary outcomes included QoL (Functional Assessment of Cancer Therapy-Bone Marrow Transplant), depression and anxiety (Hospital Anxiety and Depression Scale), and posttraumatic stress disorder symptoms (Post-Traumatic Stress Disorder Checklist-Civilian Version) at baseline and at weeks 2, 4, 12, and 24 post-BMT. The System Usability Scale (≥80 indicates excellent usability) was administered at 4 weeks post-BMT. RESULTS:Of eligible patients, 62.5% (85/136) consented and 59.6% (81/136) enrolled in the study (mean [SD] age, 57.9 [14.7] years; 51.9% female; 70.4% underwent allogeneic BMT). Among those assigned to BMT-VR, 64.1% completed ≥4 of 6 modules, exceeding feasibility benchmarks, and 69.2% (27/39) rated usability as excellent. After 4 weeks, patients assigned to BMT-VR reported improved QoL (108.2 vs 96.8; P=.014) and anxiety symptoms (3.6 vs 5.3; P=.016) versus usual care. No differences in depression or PTSD symptoms emerged at 4 weeks. Longitudinally, BMT-VR participants showed greater improvements in QoL (β = 3.8; P=.002), depression (β = -0.8; P<.001), and PTSD (β = -1.7; P=.006), but not in anxiety, compared with usual care. CONCLUSIONS:A VR-delivered psychosocial intervention is feasible during hospitalization for autologous or allogeneic BMT and shows promising preliminary effects on QoL and psychological outcomes. A future multisite trial is needed to assess efficacy for improving QoL and psychological distress in BMT recipients.

Background No data exists examining chimeric antigen receptor T-cell therapy (CAR-T) outcomes among those with limited social support (LSS) and/or increased psychosocial complexity (IPC). Methods We identified adults undergoing CAR-T at Massachusetts General Hospital (MGH) from 6/2016-1/2025 using our institutional database. Each patient underwent a systematic social work assessment prior to CAR-T. We reviewed the social work assessment and generated a social support score (SSS, 0-4, higher scores equaling higher caregiver support) and psychosocial complexity score incorporating caregiver support plus financial concerns, language barrier, substance use disorder, unstable housing, transportation concerns, and other concerns (PCS, 0-10, with higher scores equaling higher complexity). We utilized the median split to define LSS and IPC. We assessed the relationship between LSS and IPC with CAR-T toxicity (intensive care unit [ICU] admission, cytokine release syndrome [CRS] [yes vs no and grade 3+], immune cell-associated neurotoxicity syndrome [ICANS] [yes vs no and grade 3+] and length of stay [LOS]) using Fisher's exact test for categorical variables and t-tests for LOS. We also evaluated the association of SSS and PCS with overall survival (OS) using multivariable Cox regression adjusting for age, diagnosis, ECOG performance status, and location of CAR-T infusion. Results We identified 449 patients with a systematic social work assessment. The median age was 68 years (range: 23-94), and the most common diagnoses were non-Hodgkin lymphoma (71%) and multiple myeloma (28%). A plurality of patients received liso-cel (29%), followed by tisa-cel (19%), axi-cel (18%), and ide-cel (13%). On assessment, 5% of patients could not identify a caregiver, 13% had caregiver availability concerns, 4% had unstable housing, and 5% had substance use disorders. Overall, 24% of patients had financial concerns, 7% had transportation concerns, and 7% had other concerns noted by social work assessment. SSS below the median (compared to above median) was not associated with ICU admission (5% vs. 7%, p=0.69), CRS (76% vs. 77%, p=0.65), grade 3+ CRS (3% vs. 2%, p=0.76), ICANS (32% vs 39%, p=0.16), grade 3+ ICANS (14% vs. 17%, p=0.36), or LOS (17 vs 17, p=0.87). PCS above the median (compared to below median) was not associated with ICU admission (6% vs. 6%, p=0.84), CRS (78% vs. 77%, p=0.73), grade 3+ CRS (3% vs. 2%, p=0.76), ICANS (33% vs 38%, p=0.27), grade 3+ ICANS (14% vs. 17%, p=0.51), or LOS (17 vs 17, p=0.79). Neither SSS (HR 1.02, p=0.76) nor PCS (HR 0.98, p=0.71) were associated with OS. Conclusions In a systematic social support analysis, a significant percentage of patients noted caregiver availability issues and/or financial concerns. However, neither LSS nor IPC were associated with increased CAR-T toxicity or worse survival, underscoring that psychosocial barriers should not limit access to CAR-T.

Background: Chronic graft-versus-host disease (cGVHD) affects up to 40% of allogeneic hematopoietic cell transplant (HCT) survivors, producing lasting physical and psychosocial sequelae. Despite their high symptom burden, survivors with cGVHD are rarely included in survivorship intervention research. This pilot study evaluated the feasibility and acceptability of a group-based coping intervention for patients with cGVHD (Horizons program), delivered in English and Spanish to patients in South Florida, USA to inform larger-scale testing. Methods: We conducted a single-arm trial of the Horizons program, enrolling adults with moderate or severe cGVHD from an academic medical center. Enrollment and group assignment were stratified by language. Participants engaged in eight weekly 90-minute videoconference sessions co-led by a transplant clinician and behavioral health expert (5-6 participants per group). Feasibility benchmarks included ≥50% enrollment, ≥80% attendance, and ≥80% retention. Exit interviews were analyzed using content analysis to assess acceptability. Results: From December 2023 to August 2024, 21 of 40 approached patients enrolled (52.5%). The sample (median age 60) was 71% male and 71% Hispanic/Latino; 11 participated in English and 10 in Spanish. Nineteen participants (90.5%) attended ≥4 sessions, and 95.2% completed follow-up. Treatment fidelity averaged 96.7%. Qualitative feedback underscored increased support, self-efficacy, and connection. Participants emphasized peer validation, the development of coping skills, and comfort in discussing their experiences. Conclusion: Horizons demonstrated high feasibility, excellent fidelity, and acceptability among diverse, English- and Spanish-speaking cGVHD survivors, supporting further evaluation in larger, multisite trials.

BACKGROUND:Chimeric antigen receptor T-cell therapy (CAR-T) is a transformative therapy for relapsed/refractory hematologic malignancies but often results in significant toxicities. While patient-reported outcomes (PROs) are associated with outcomes in patients receiving other oncologic therapies, the relationship between pre-CAR-T PROs and CAR-T outcomes remains unknown. OBJECTIVE:We aimed to analyze the association between pre-CAR-T infusion PROs (Quality of life [QOL], physical symptoms, anxiety, depression, post-traumatic stress disorder [PTSD] symptoms, physical symptoms) and clinical outcomes in CAR-T, including cytokine release syndrome (CRS), neurotoxicity, hospital length of stay (LOS), and overall survival (OS). STUDY DESIGN:We conducted a secondary analysis of a longitudinal study of 100 adults 18+ years with relapsed/refractory hematologic malignancies receiving CAR-T at a single academic center. We assessed QOL (Functional Assessment of Cancer Therapy-General), mood (Hospital Anxiety and Depression Scale), and physical symptoms (Edmonton Symptom Assessment Scale-revised) prior to CAR-T infusion. We assessed the association of pre-CAR-T PROs with CRS (grade 2+), neurotoxicity (yes or no), LOS, and OS using univariate models and multivariable models adjusting for patient-, disease-, and treatment-factors. We assessed all PROs continuously. RESULTS:The median age was 66 (range 23-90) years, 37% of patients were female, and the majority were White (87%) and married/partnered (77%). The most common diagnosis was non-Hodgkin lymphoma (70%) followed by multiple myeloma (28%). The most frequently used CAR-T products were tisagenlecleucel (34%), followed by lisocabtagene maraleucel (16%), axicabtagene ciloleucel (13%), and idecabtagene vicleucel (12%). CRS occurred in 76% (26% grade 2+) and neurotoxicity occurred in 33%. The median LOS for CAR-T was 14.5 days. In multivariable analyses, greater pre-CAR-T QOL was associated with lower risk of CRS (odds ratio [OR] 0.97, P = .03) and neurotoxicity (OR = 0.97, P = .03); while greater depression symptoms pre-CAR-T (OR = 1.15, P = .02) were associated with higher risk of neurotoxicity. In multivariable analyses, worse physical symptoms pre-CAR-T (HR 1.03, P = .04) were associated with worse OS. There was no significant association between QOL, depression or anxiety symptoms with OS. Pre-CAR-T PROs were not associated with LOS. CONCLUSIONS:Pre-CAR-T PROs are associated with OS post-CAR-T and risk of CRS and neurotoxicity in CAR-T recipients. These findings underscore the potential utility of pre-CAR-T PROs as important prognostic factors for CAR-T outcomes.

PURPOSE:Family and friend caregivers of patients undergoing hematopoietic stem-cell transplantation (HSCT) struggle with immense caregiving burden, leading to substantial quality of life (QOL) impairments and psychological distress. Yet, interventions to address caregivers' needs are limited. MATERIALS AND METHODS:We conducted a randomized controlled trial of a psychosocial digital application (BMT-CARE App) versus usual care for adult caregivers of patients with hematologic malignancies undergoing HSCT. The BMT-CARE App included five modules combining psychoeducation and evidence-based behavior change strategies. Participants completed self-report measures at baseline and day 60 post-HSCT. The primary end point was QOL at day 60 assessed by the CareGiver Oncology QOL (CarGOQOL) measure. We also assessed caregiving burden (Caregiver Reaction Assessment), anxiety and depression symptoms (Hospital Anxiety and Depression Scale), and post-traumatic stress disorder (PTSD) symptoms (PTSD Checklist [PCL-5]). We used analysis of covariance adjusting for baseline scores to assess the effect of the intervention on study outcomes. RESULTS:Between February 2023 and July 2024, we enrolled 125 of 174 approached caregivers (71.8%). Participants assigned to the BMT-CARE App used the app for a median of 146.9 minutes (range, 0-384.8). At day 60, BMT-CARE App caregivers reported clinically and significantly better QOL than those assigned to usual care (adjusted means = 76.3 v 69.9, P = .006). BMT-CARE App participants also reported significantly lower caregiving burden (11.2 v 12.3, P = .023), depression (3.8 v 5.6, P = .002), and PTSD symptoms (26.1 v 31.3, P = .012). The groups did not differ significantly in anxiety symptoms at day 60. CONCLUSION:The BMT-CARE App led to significantly improved QOL, caregiving burden, depression, and PTSD symptoms among HSCT caregivers. This intervention should be tested in a multicenter study with a diverse HSCT caregiver population to determine generalizability and scalability.

BACKGROUND:Immune checkpoint modulators (ICMs) have revolutionized cancer treatment but have unique immune-related adverse events (irAEs). The aim of this study was to develop and validate a brief measure of the most common, distressing, and diagnostically useful symptomatic irAEs. METHODS:Items were generated to assess symptomatic irAEs through a multistep process of (1) literature review and iterative expert input and (2) qualitative interviews of patients, caregivers, and clinicians regarding ICM-related irAEs and quality of life (QOL) impacts. An initial item set was administered across five longitudinal or cross-sectional studies. The final item set was selected using a Delphi method; validity, reliability, minimally important differences (MIDs), and sensitivity to change were evaluated. RESULTS:Qualitative interviews with 14 patients, seven caregivers, and six clinicians informed an initial set of 46 symptomatic irAEs, which was administered to patients (N = 503, 52% female, mean age = 64) treated with ICMs for non-small cell lung cancer (n = 342), head and neck cancer (n = 72), renal cell carcinoma (n = 43), or melanoma (n = 46). A final item set was selected and mapped to FACIT library items. This produced the 17-item FACT-ICM Symptom Index, which showed reliability (α = 0.86), construct validity (comparative fit index = 0.93), convergent validity with validated measures of physical QOL (r = 0.69-0.73), discriminant validity with emotional and social QOL (r = 0.03-0.65), and criterion validity (i.e., better performance status was associated with fewer concerns). Response option anchors adequately captured MIDs and were sensitive to change. CONCLUSIONS:This brief 17-item FACT-ICM Symptom Index demonstrates initial construct, convergent, and divergent validity, reliability, MID, and sensitivity to change and is ready for use in research and clinical care.

Background:Caregivers of cancer survivors experience chronic stress, increasing emotional and physical health risks. Many caregivers report unmet psychosocial needs and maladaptive coping strategies, resulting in high caregiver burden and impaired quality of life. Existing interventions primarily address caregiver needs during active treatment or in relation to end-of-life care, with few providing targeted resources for caregivers coping with the challenges of post-active treatment survivorship - either for those supporting curvivors (cancer survivors who have completed curative therapy) or metavivors (patients living with metastatic disease). Objective:This single-site pilot randomized trial, Forward Together (ForTe), aims to determine the feasibility (e.g., enrollment, survey completion, and group attendance rates), acceptability (e.g., program satisfaction and quality rating), and preliminary effects on resilience and healthcare utilization of the Stress Management and Resiliency Training: The Relaxation Response Resiliency Program (SMART-3RP) compared to Enhanced Usual Care (EUC; referral to CanCare.org caregiver and patient virtual support groups). (Clinical Trials ID: NCT05702723). Methods:A multimodal recruitment approach, including both proactive and reactive methods, will be used to identify potential dyads for this study. Dyads (cancer survivor and caregiver) will be randomized 1:1 to SMART-3RP or EUC. Dyads randomized to the SMART-3RP will participate separately but simultaneously in 9 survivor- or caregiver-specific group sessions. Results:This study is funded by the National Cancer Institute. Study procedures were approved by the Dana-Farber Harvard Cancer Center Institutional Review Board. Study procedures are complete; data analysis is ongoing.

BACKGROUND:Chimeric antigen receptor-T (CAR-T) cell therapy has improved survival, yet its toxic profile may impact on survivors' well-being. We examined patients' and caregivers' perspectives on the most common, severe, and distressing side effects across recovery (ie, first 60 days) and survivorship (ie, 60 days and onwards) and explored their perspectives on the education received to prepare for CAR-T. MATERIALS AND METHODS:We conducted semi-structured interviews with patients and caregivers addressing (1) how they prepared for CAR-T, (2) the side effects experienced during the first-year post-treatment, and (3) how to best educate future patients and caregivers. RESULTS:We included 19 patients and 12 caregivers. We identified 6 major themes. First, participants reported intense hope as well as stress and fear when presented with CAR-T, viewing it as a distinct and exceptional treatment. Second, following CAR-T infusion, some patients experienced intense symptoms (eg, fatigue, pain), while others were confused if not presenting with symptoms. Third, following discharge, patients experienced a myriad of ongoing symptoms, some of which were severe (eg, fatigue, cognitive symptoms, pain) and negatively impacted on their recovery. Fourth, some long-term survivors experienced ongoing symptoms but accepted this trade-off for being alive. Fifth, most patients and caregivers felt well prepared to cope with CAR-T, although some expressed the desire for more information on long-term side effects. Sixth, participants would recommend CAR-T to others while acknowledging the risk of experiencing side effects. CONCLUSIONS:Participants commonly reported significant symptoms throughout treatment and recovery. Additional education on long-term survivorship is needed.

Graft-versus-host disease (GVHD) is a complication of hematopoietic cell transplantation (HCT) that has a low chance of complete remission and a substantial effect on morbidity and mortality. To better understand how to improve the field of GVHD research, management, and care, the cGVHD Eurograft Initiative organised a European community advisory board of patient advocates, with the assistance of the Lymphoma Coalition, to identify unmet needs. We present the results of this project in this Viewpoint, which identify unmet GVHD needs from the patient advocates' perspectives and provide five key actionable themes to improve GVHD management and care. The identified themes were: the need for reliable and tailored information, increased patient empowerment, access to professional dedicated care, optimal emotional support, and attention to the financial implications of GVHD, with improved communication as an overarching theme. This first step in patient-centred research opens the way to future collaborative initiatives by merging stakeholder perspectives to strive for better care and outcomes after HCT by addressing the most pertinent patient needs.

Patients hospitalized for hematopoietic cell transplantation (HCT) may experience prolonged length of stay (PLOS). However, the associations between PLOS and patient-reported outcomes (PROs) during and after HCT hospitalization is unknown. We aimed to evaluate the associations of pre-HCT demographic and disease characteristics and PROs with PLOS, as well as the associations between PLOS and trajectory of PROs and risk of rehospitalization in the first year post-HCT. We conducted a secondary analysis of data from adult patients with hematologic malignancies undergoing HCT who were enrolled in a prospective observational study or one of two randomized clinical trials evaluating integrated specialty palliative care during HCT hospitalization. PLOS was defined as ≥30 continuous days for allogeneic HCT and ≥21 continuous days for autologous HCT. Quality of life (QOL; Functional Assessment of Cancer Therapy Bone Marrow Transplant), symptom burden (Edmonton Symptom Assessment Scale), anxiety and depression symptoms (Hospital Anxiety and Depression Scale and Patient Health Questionnaire-9), and posttraumatic stress symptoms (PCL) were measured at time of admission (ie, prior to HCT), 2 weeks, and 3 and 6 months post-HCT. Multivariate logistic regression was used to assess the association between pre-HCT PROs and PLOS adjusting for relevant covariates. Linear mixed-effects models were used to characterize the trajectory of PROs by PLOS during and after HCT. Cox proportional hazards regression was used to evaluate differences between LOS groups in time to readmission or death in the first year post-HCT. A total of 606 patients (mean age = 55.7 years [18.3 to 78.0 years]; 56.6% male; 81.5% White; 53.1% allogeneic HCT) were included. Patients with PLOS were younger (mean 53.3 versus 56.6 years, P = .004), in complete remission prior to HCT (52.8% versus 46.3%, P = .02), diagnosed with acute leukemia (34.2% versus 26.1%, P < .001), and underwent allogeneic HCT (62.1% versus 49.9%, P < .0001). In multivariate analyses, worse pre-HCT QOL (OR 0.99, P = .003), symptom burden (OR 1.02, P = .01), and depressive symptoms (OR 1.07, P = .01) were associated with higher risk of PLOS. Patients with PLOS reported worse QOL at 2 weeks (∆ = -12.3, P < .0001), 3 months (∆ = -6.9, P = .002), and 6 months post-HCT (∆ =-4.8, P = .02) compared to those without PLOS. Patients with PLOS reported greater symptom burden at 2 weeks (∆ = 10.2, P < .0001) and 3 months (∆ = 3.9, P = .04), but not 6 months post-HCT (∆ = 0.5, P = .79). Patients with PLOS reported higher depression burden at 2 weeks (∆ = 2.5, P < .0001) and 3 months (∆ = 1.1, P = .03), but not 6 months post-HCT (∆ = 0.6, P = .19). Patients with PLOS experienced shorter time to death or re-admission in the first year post-HCT (median 221 days versus not reached, HR 1.7; CI 1.3 to 2.2, P < .001). Pre-HCT PROs including QOL, symptom burden, and depressive symptoms were associated with PLOS. Moreover, patients with PLOS go on to experience worse QOL, symptom burden, and depressive symptoms up to 6 months post-HCT and are at an increased risk of mortality and greater healthcare utilization. Patients with PLOS may have unique needs compared to the usual HCT population and may benefit from augmented supportive care during and after HCT.

Many transplant centers (TCs) require a patient to have a caregiver 24 hours a day, 7 days a week for a minimum timeframe to proceed with an allogeneic hematopoietic cell transplant (alloHCT). However, this requirement varies across TCs, with timing of requirements varying from no requirements up to 180 days, and there is inconclusive evidence to support the need for this requirement. The current caregiver requirement paradigm can limit access for many patients, besides causing a significant physical, emotional, and financial burden on caregivers. This article reviews literature on the current alloHCT caregiver paradigm and identifies barriers to change. Lastly, it highlights alternative caregiving models that are currently being implemented, as well as opportunities for future directions to improve access, including the need for research on interventions such as remote monitoring, community partnerships, policy changes, and enhanced screening. There is a need for evidence-based patient-centered care models to transform the caregiver paradigm to ensure that all patients can receive the treatment they need, irrespective of whether they have a caregiver. The future of post-alloHCT care demands a shift towards patient-centered, flexible caregiving models that accommodate the diverse needs and circumstances of patients. Such evidence-based changes in the paradigm can help improve access to, and outcomes for, alloHCT.

Introduction Caregivers of patients undergoing haematopoietic stem cell transplantation (HSCT) experience tremendous psychological distress before, during and after HSCT. However, few interventions are tailored to the protracted needs of these caregivers while considering scalability and accessibility. We previously developed an evidence-based intervention for caregivers of patients undergoing HSCT that improved quality of life (QOL), caregiving burden and mood. We have since adapted this clinician-delivered intervention into a self-administered, digital health application (BMT-CARE app) and are currently evaluating the effect of this intervention on QOL in caregivers of patients receiving HSCT.Methods and analysis The study design is a non-blinded randomised controlled trial of a digital health intervention for caregivers of patients undergoing HSCT at the Massachusetts General Hospital Cancer Center. We are enrolling and randomising 125 caregivers to receive the BMT-CARE app or usual care in a 1:1 assignment, stratifying by transplant type (autologous vs allogeneic). Caregivers assigned to the BMT-CARE app complete five self-guided modules designed to improve coping and stress management prior to and up to 60 days post-HSCT. The modules include interactive, gamified features and video vignettes to optimise engagement. Participants complete questionnaires at baseline and days 10, 60 and 100 post-HSCT. The primary outcome is comparison of QOL at day 60 post-HSCT. Secondary outcomes include caregiver burden, anxiety and depression symptoms, as well as post-traumatic stress symptoms. We are also exploring the usability of the BMT-CARE app to inform refinements prior to future testing.Ethics and dissemination The study is funded by the Leukemia and Lymphoma Society and approved by the Dana-Farber/Harvard Cancer Center Institutional Review Board (Protocol #22–634 v.1.5). The results of this study will be reported in accordance with the Consolidated Standards of Reporting Trials statement for non-pharmacological trials. Results will be disseminated at scientific meetings and in peer-reviewed journals.Trial registration number NCT05709912; Pre-results.

Patient-reported outcomes (PROs) to measure quality of life (QOL) and other symptoms play an increasingly important role in clinical trials and regulatory approvals for hematopoietic cell transplantation (HCT) and chimeric antigen receptor T-cell (CAR-T) therapy. However, their adoption has been hindered by wide heterogeneity in the choice of PRO measures for clinical research, including the Functional Assessment of Cancer Therapy Bone Marrow Transplantation (FACT-BMT) and the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30) inventories. In addition, the potential for PRO integration into routine standard-of-care (SOC) practice for patients undergoing HCT or CAR-T therapy has not yet been realized. As part of a coordinated effort by 3 American Society for Transplantation and Cellular Therapy Special Interest Groups, we developed best practices for PRO integration in adult and pediatric recipients of HCT and CAR-T therapy. We strongly encourage the use of the Patient-Reported Outcomes Measurement Information System (PROMIS) or the PRO version of Common Terminology Criteria for Adverse Events (PRO-CTCAE) instruments as the primary PRO measures for most HCT and CAR-T trials. Measures such as the PROMIS-29 inventory can be used for QOL assessments, while PRO-CTCAE item banks can be used for specific symptoms. Rationales for our strong recommendation to move from FACT-BMT and EORTC QLQ-C30 to PROMIS/PRO-CTCAE instruments include: (1) free licensing and ease of implementation, including in electronic medical records; (2) psychometric validation in a variety of oncologic settings, including during inpatient hospitalizations; (3) translation into multiple languages, with validation in both adult and pediatric settings; and (4) adoption into centrally collected PRO protocols from the Center for International Blood and Marrow Transplant Research for both HCT and CAR-T recipients. Steps to operationalize these PRO measures are discussed, as are methods to migrate existing data from legacy PRO instruments. We similarly recommend the consideration of PRO integration into SOC clinical practice, including the development of threshold-based workflows to both personalize and standardize care in this setting. Other panel recommendations include the use of standardized timepoints for longitudinal PRO assessments and the inclusion of patient advocates when implementing PRO measures. Implementing these steps will improve the ability of PROs to improve outcomes for patients undergoing HCT or CAR-T therapy, both in trials and-more importantly-in SOC practice.

CONTEXT:Fatigue is the most commonly-reported symptom during long-term survivorship after hematopoietic cell transplant (HCT). OBJECTIVES:We sought to describe how HCT recipients experience and manage persistent post-transplant fatigue and to identify patient perceptions of and preferences for fatigue support. METHODS:HCT recipients who were at least six months after autologous or allogeneic HCT and experiencing moderate to severe fatigue based on the fatiue symptom inventory (severity rating ≥4 / 0-10 scale) participated in this qualitative study conducted at a tertiary care transplant center. Participants completed in-depth individual interviews using semi-structured guides that probed their experiences with persistent fatigue. We simultaneously interviewed a small sample of five HCT clinicians. We used thematic analysis to code verbatim transcripts for a priori and identified themes. RESULTS:Participants (N = 20; median (range) age = 55 (31-78) years; n = 9 female) were a median of 3.88 years (6 months-13 years) post-transplant and reported moderate fatigue severity (median = 5 (4-9)/0-10 scale). Final themes included: 1) challenges describing the multidimensional symptom of persistent fatigue, 2) fatigue as an impairing ongoing symptom, 3) identification of a variety of factors modulating persistent fatigue, 4) use of action- and emotion-oriented strategies to manage fatigue, and 5) desire for additional information and fatigue support. CONCLUSION:Study findings highlight the numerous and ongoing disruptions to everyday life experienced by patients living with persistent fatigue following HCT, variety of management strategies, and their desire for supportive programs to aid in the management of this symptom. Results support the need for future research into evidence-based interventions to alleviate HCT survivors' fatigue.

Background CAR T-cell therapy (CAR-T) is leading to durable responses in patients with cancer but there is concern that cytokine release syndrome (CRS) and neurotoxicity may impact survivors' cognitive function. We assessed long-term cognitive function in CAR-T recipients and examine factors associated with change in cognition over time. Methods We assessed perceived cognition (Functional Assessment of Cancer Therapy-Cognition) and neurocognitive performance (standardized neuropsychological battery) in adult patients prior to receiving CAR-T and at 6 month follow-up. We examined changes in cognitive outcomes using paired T-tests. We used univariate and multivariate linear regression models to explore whether patient-, disease-, or CAR-T specific factors were associated with change in cognition over time. Results We included 106 participants (mean age = 62.7 years, 60.4% male, 56.6% diagnosed with non-Hodgkins lymphoma), of whom 70 reported perceived cognition data and 26 underwent neurocognitive performance assessments at both timepoints. There were no changes in perceived cognition (P = .560), overall neurocognitive performance (P = .924), or neurocognitive domains (Ps > .05) from baseline to 6 months post CAR-T. At 6 months, 32.9% reported improved, 47.1% stable, and 20.0% declined perceived cognition relative to baseline. In unadjusted analyses, progressive disease (beta = -8.86, P = .012), baseline elevated C-reactive protein (beta = -5.60, P = .076) and baseline neurologic comorbidity (beta = -11.4, P = .052) were numerically associated with worse perceived cognition over time. In multivariate analyses, only progressive disease was statistically significantly associated with worse perceived cognition (beta = -7.32, P = .032) over time. Conclusions We found stable cognition among CAR-T recipients and identified an association of therapy response with change in perceived cognition over time.