A novel psychosocial virtual reality intervention (BMT-VR) for patients undergoing hematopoietic stem cell transplantation: Pilot randomized clinical trial design and methods.

BACKGROUND: Although patients undergoing hematopoietic stem cell transplantation (HSCT) must cope with psychological distress and isolation during an extended transplant hospitalization, psychosocial interventions to address these unmet needs are lacking. Virtual reality offers an innovative modality to deliver a patient-centered psychosocial intervention to address psychosocial needs of patients undergoing HSCT. However, there are currently no supportive care interventions leveraging virtual reality in patients undergoing HSCT. OBJECTIVE: To describe the methods of a randomized clinical trial (RCT) to assess the feasibility and preliminary efficacy of a self-administered, virtual reality-delivered psychosocial intervention (BMT-VR) to improve psychological distress and quality of life (QOL) for patients hospitalized for HSCT. METHODS: This study entails a single-center RCT of BMT-VR compared to usual transplant care in 80 patients hospitalized for HSCT. Adult patients with hematologic malignancies hospitalized for autologous or allogeneic HSCT are eligible. BMT-VR includes psychoeducation about the HSCT process, psychosocial skill building to promote effective coping and acceptance, and self-care and positive psychology skills to promote post-HSCT recovery. The primary aim is to assess the feasibility defined a priori as ≥60% of eligible patients enrolling in the study, and of those enrolled and randomized to the BMT-VR, ≥ 60% completing 4/6 BMT-VR modules. Secondary objectives include assessing the preliminary effects on psychological distress and QOL. DISCUSSION: This is the first RCT of a virtual reality-delivered psychosocial intervention for the HSCT population. If deemed feasible, a future larger multi-site clinical trial can evaluate the efficacy of BMT-VR on outcomes for patients hospitalized for HSCT.

Outcomes of a Formal Hematopoietic Cell Transplantation Survivorship Program on Screening for Late Effects.

Allogeneic hematopoietic cell transplantation (HCT) survivors may benefit from routine screening for post-transplant complications. However, the impact of formal survivorship efforts to promote screening adherence is uncertain. The effect of a formal HCT survivorship program to promote screening adherence was evaluated. We conducted a retrospective analysis of an academic formal HCT survivorship program with primary and specialty consult components. We included patients who underwent allogeneic HCT and were alive and relapse-free 1-year post-HCT. We excluded patients who died <2-year post-HCT or transferred care. We measured screening adherence to cardiovascular, pulmonary, ocular, secondary cancer, and endocrine evaluations. The primary outcome was proportion of patients completing ≥1 evaluation per screening domain prior to 2-year post-HCT. We examined screening adherence during 3 time periods: presurvivorship (2012 to 2014) and 2 postsurvivorship (2016 to 2018 and 2019 to 2021) using multivariate logistic and Cox proportional hazards regression. Four hundred ten patients (2012 to 2014: n = 136, 2016 to 2018: n = 153, 2019 to 2021: n = 121) were included. Compared to the presurvivorship period (16.9%), patients in 2016 to 2018 (47.7%, odds ratio [OR] = 4.9, P < .0001) and 2019 to 2021 (34.7%, OR = 2.7, P = .001) were more likely to complete ≥1 evaluation per screening domain. Except for pulmonary function tests in 2019 to 2021, median time to completion of survivorship evaluations was shorter in the survivorship periods compared to presurvivorship. Patients who completed a formal HCT survivorship consult in 2016 to 2018 and 2019 to 2021 were more likely to complete ≥1 evaluation per screening domain (OR = 5.1, P = .0004). Survivorship consult had similar effect on the primary screening outcome in 2016 to 2018 and 2019 to 2021 (consult × time interaction OR: 2.5, P = .2). However, patients who received a consult in 2019 to 2021 were more likely to complete all screenings (consult × time interaction: OR = 5.7, P = .03). Our HCT survivorship program with primary and specialty components improved screening adherence. Additional studies are needed to evaluate efficacy, dissemination, and implementation of formal HCT survivorship programs.

Barriers, Facilitators, and Preferences for Mental Health Services Among Patients With Systemic Lupus Erythematosus: A Qualitative Study.

OBJECTIVE: Although patients with systemic lupus erythematosus (SLE) experience high levels of depression and anxiety disorders, evidence concerning patient perceptions of facilitators and barriers to effective uptake of mental health services (eg, referral to therapists and psychiatrists, psychoeducational interventions, or support groups) is limited. METHODS: We conducted semistructured qualitative interviews with 15 adults with SLE to explore patient experiences and perceptions of mental health services to identify facilitators and barriers to accessing mental health care among patients with SLE. Qualitative interviews were conducted via telephone and audio recorded for transcription and directed content analysis using NVivo software by two coders. RESULTS: The median age of the 15 participants was 48 years, 87% were female, 33% identified as Black or African American, and 33% identified as Hispanic or Latino. Qualitative themes were organized into three domains: barriers, facilitators, and preferences for mental health services. Barriers to the use of mental health services include mental health stigma, sociodemographic factors, lack of autonomy, and time commitment. Facilitators to the use of mental health services included strong relationships with their rheumatologists and mental health care clinician experience with patients with SLE. Preferences for mental health services included education-based formats, mental health providers who work with patients with SLE, peer group formats, demographically and disease-matched psychological resources, and an emphasis on non-disease-related activities. CONCLUSION: In the setting of persistent unmet psychosocial needs of patients living with SLE, data from this qualitative study will inform the development and refinement of mental health interventions that bolster psychological wellbeing in the SLE population.

Annual Meeting Content Analysis: Leveraging Annual Meetings to Promote Diversity, Equity, Inclusion, and Belonging in the Academy of Consultation-Liaison Psychiatry.

BACKGROUND: There is an increasing need to promote diversity, equity, and inclusion (DEI) in all aspects of academic medicine, including through continuing medical education. Although professional medical organizations' annual meetings play an instrumental role in continuing medical education for physicians, there are no studies describing DEI content in the annual meeting programming of professional medical organizations, including the Academy of Consultation-Liaison Psychiatry (ACLP), the primary professional organization for consultation-liaison psychiatrists. OBJECTIVE: To examine the ACLP annual meeting titles using Content Analysis. METHODS: We examined the publicly available ACLP annual meeting content titles on the ACLP website from 2010 to 2021. National DEI leaders from ACLP's DEI subcommittee iteratively generated keywords that covered a broad scope of DEI-related themes. Each annual meeting's content was independently coded by 2 members of the DEI subcommittee with discrepancies adjudicated by 2 additional members. Descriptive statistics were used to characterize the content of the annual meeting. RESULTS: Of the 2615 annual meeting titles from 2010 to 2021 that were analyzed, 2531 were not coded to have DEI themes. Three percent (n = 84) of titles were coded to have a DEI theme as follows: Culture/diversity (n = 20, 24%), bias/disparities (n = 17, 20%), race/racism (n = 17, 20%), social justice (n = 12, 14%), gender/sexism (n = 10, 12%), and LGBTQ+ (n = 8, 10%). The frequency of DEI titles each year ranged from 1% (2010, 2018) to 17% (2021) with an increase in DEI content in 2021 (n = 24, 17%). CONCLUSIONS: Although professional medical organizations like the ACLP are poised to leverage their continuing medical education platforms embedded in annual meeting programming to train consultation-liaison psychiatrists on DEI topics, our findings suggest more work is needed to develop and promote DEI-focused educational programming for their annual meetings.

Gratitude, optimism, and satisfaction with life and patient-reported outcomes in patients undergoing hematopoietic stem cell transplantation.

OBJECTIVE: Associations between positive psychological well-being (PPWB) and patient-reported outcomes (PROs, e.g., quality of life [QOL]) have yet to be studied extensively in patients with hematologic malignancies who are allogeneic hematopoietic stem cell transplant (HSCT) survivors, despite substantial evidence that PPWB impacts PROs of other medical populations. METHODS: We conducted a secondary analysis of cross-sectional data examining the association of PPWB and PROs at day 100 post-transplant among 158 allogeneic HSCT recipients. Optimism, gratitude, life satisfaction, and PROs (i.e., QOL, anxiety, depression, and PTSD symptoms) were assessed using the Life Orientation Test-Revised, Gratitude Questionnaire, Satisfaction with Life Scale, Functional Assessment of Cancer Therapy-Bone Marrow Transplant, Hospital Anxiety and Depression Scale, and Post-Traumatic Stress Disorder (PTSD) Checklist-Civilian Version, respectively. We used linear and multivariate regressions for all analyses and controlled for patient factors. RESULTS: Optimism was associated with better QOL (ß = 1.46; p < 0.001) and lower levels of anxiety (ß = -0.28; p < 0.001), depression (ß = -0.31; p < 0.001), and PTSD (ß = -0.58; p < 0.001). Gratitude was associated with better QOL (ß = 1.11; p < 0.001) and lower levels of anxiety (ß = -0.21; p = 0.001), depression (ß = -0.14; p = 0.021), and PTSD (ß = -0.32; p = 0.032). Finally, satisfaction with life was associated with better QOL (ß = 1.26; p < 0.001) and lower levels of anxiety (ß = -0.18; p < 0.001), depression (ß = -0.21; p < 0.001), and PTSD (ß = -0.49; p < 0.001). CONCLUSION: Optimism, gratitude, and satisfaction with life were all associated with better QOL and lower levels of psychological distress in allogeneic HSCT survivors. These data support studies to harness PPWB as a therapeutic intervention for this population throughout HSCT recovery.

Pilot Randomized Controlled Trial of an Educational Video for CAR T-Cell Therapy Recipients.

BACKGROUND: CAR T-cell therapy has transformed the treatment of hematologic malignancies, but it is complex and challenging to convey to patients. Educational video interventions are efficacious for improving patient knowledge about cancer therapeutics and informing their care preferences, yet no educational videos have been evaluated in CAR T-cell therapy. METHODS: We conducted a randomized controlled trial comparing an educational video versus usual care in adults (age ≥18 years) with hematologic malignancies receiving CAR T-cell therapy at Massachusetts General Hospital. Intervention participants watched a 13-minute video depicting how CAR T-cell therapy works, logistics, toxicities, prognosis, recovery, and approaches for dealing with prognostic uncertainty. The primary outcome was feasibility (≥60% enrollment rate). Secondary outcomes included acceptability (≥80% reporting comfort with the video), patients' knowledge about CAR T-cell therapy (10-item test), and self-efficacy (Communication and Attitudinal Self-Efficacy Scale-Cancer), decision satisfaction (Decision Conflict Scale), psychological distress (Hospital Anxiety and Depression Scale), and preference for CAR T-cell therapy. RESULTS: We enrolled 79% (80/101) of eligible patients. Of that group, 91% (30/33) reported being very or somewhat comfortable watching the video, and 94% (31/33) would definitely or probably recommend the video. At 1 month, participants in the video arm reported higher self-efficacy (mean difference [MD], 9.2 [95% CI, -4.0 to 22.3]; Cohen's d, 0.32), decision satisfaction (MD, 2.5 [95% CI, 0.7-4.2]; Cohen's d, 0.67), and lower anxiety (MD, -0.8 [95% CI, -2.5 to 0.7]; Cohen's d, 0.26) compared with participants in the usual care arm. At 1 week, both arms reported high preferences for CAR T-cell therapy (video arm, 94% [33/35]; usual care, 84% [27/32]). CONCLUSIONS: We found that an educational video for patients receiving CAR T-cell therapy was feasible and acceptable. The educational video demonstrated promising preliminary effects on patient self-efficacy and decision satisfaction and warrants further study.

A Positive Psychology Intervention for Caregivers of Hematopoietic Stem Cell Transplantation Survivors (PATH-C): Initial Testing and Single-Arm Pilot Trial.

Caregivers of patients with hematologic malignancies undergoing allogeneic hematopoietic stem cell transplantation (HSCT) play a crucial role in supporting their loved ones through physical, emotional, and practical challenges. This role has been associated with high levels of psychological distress and low levels of positive psychological well-being (PPWB). Positive psychology interventions for caregivers in other disease groups (eg, breast cancer) have been associated with improved outcomes. However, positive psychology interventions that specifically address HSCT caregivers' psychological needs are currently lacking. The goal of this single-arm open-pilot trial was to determine the feasibility and acceptability of the Positive Affect in the Transplantation of Hematopoietic Stem Cells (PATH) intervention for HSCT Caregivers to identify caregiver preferences to tailor PATH for HSCT caregivers. Adult caregivers of HSCT recipients were eligible for PATH during the HSCT recipient's first 100 d post-transplant. We defined, a priori, feasibility as >60% of participants who start the intervention completing ≥6/9 intervention sessions and acceptability as weekly ratings of ease and utility of the PP exercises ≥7/10 on a 10-point Likert Scale (0 = very difficult/not helpful; 10 = very easy/very helpful). We conducted semistructured qualitative exit interviews (n = 15) to explore HSCT caregivers' perception of PATH's content, benefits of PATH, as well as facilitators and barriers to engaging with the intervention. Transcribed interviews were analyzed using framework-guided rapid analysis by 2 coders. The intervention was feasible with 83% (15/18) of caregivers who started the intervention completing ≥6/9 intervention sessions. Among caregivers who completed ≥6/9 intervention sessions, ratings of ease (mean = 8.1; 95% CI: 7.4, 8.7) and utility (mean = 8.3; 95% CI: 7.8, 8.9) also exceeded our a priori threshold of ≥7/10. Caregivers identified benefits of PATH, including identifying and responding to emotions, dedicating time to self-care, and cultivating important relationships. Sociodemographic factors (eg, being retired) and the manualized structure of PATH were cited as facilitators to intervention engagement. Barriers to PATH engagement included lack of time and competing caregiving responsibilities. Caregivers preferred remote intervention delivery within the first 100 d post HSCT. This is the first study to show a 9-wk, phone-delivered positive psychology intervention is feasible in caregivers of allogeneic HSCT recipients. Our findings also underscore the specific preferences of this population for positive psychology interventions. Larger studies are warranted to establish the efficacy of these interventions in addressing persistent unmet psychological needs for HSCT caregivers.

Coping in patients with hematologic malignancies undergoing hematopoietic cell transplantation.

ABSTRACT: Patients undergoing hematopoietic cell transplantation (HCT) must cope with physical and psychological symptoms. Yet, studies examining pre-HCT coping are limited. We aimed to characterize pre-HCT coping, evaluate the association of coping with baseline quality of life (QOL) and psychological distress, and identify sociodemographic factors associated with pre-HCT coping. We conducted a cross-sectional analysis of baseline data from a multisite randomized supportive care intervention trial among patients with hematologic malignancies undergoing allogeneic or autologous HCT. We assessed patient-reported QOL, psychological distress, and coping within 72 hours of admission for HCT. We used the median split method to dichotomize coping and multivariate regression analyses to characterize the association of coping with psychological distress and QOL. Of patients awaiting HCT (n = 360; mean age, 55.4 years; 49.7% autologous), 43.5% were high users of approach-oriented coping, whereas 31.3% were high users of avoidant coping. Patients reported high use of emotional support (60.9%), acceptance (51.2%), self-blame (33%), and denial (31.3%). Older age (≥65 years) was associated with less frequent use of avoidant coping (odds ratio, 0.5; P = .01). Approach-oriented coping was associated with better pre-HCT QOL (Beta(B) = 6.7; P = .001), and lower depression (B = -1.1; P = .001) and anxiety (B = -0.9; P = .02) symptoms. Avoidant coping was associated with worse pre-HCT QOL (B = -13.3; P < .001) and symptoms of depression (B = 1.9; P < .001), anxiety (B = 3.1; P < .001), and posttraumatic stress disorder (B = 8.1; P < .001). Pre-HCT coping is strongly associated with psychological distress and QOL. These data support the need for interventions to address coping during HCT hospitalization. This clinical trial was registered at www.clinicaltrials.gov as #NCT03641378.

Quality of Life and Prognostic Awareness in Caregivers of Patients Receiving Chimeric Antigen Receptor T Cell Therapy.

Caregivers of patients undergoing chimeric antigen receptor T cell therapy (CAR-T) play a critical role during treatment, yet their experience remains largely unaddressed. We aimed to longitudinally describe quality of life (QoL) and psychological distress, as well as prognostic awareness, in caregivers and explore the association of prognosis awareness with baseline psychological distress. We conducted a longitudinal study of caregivers of patients undergoing CAR-T and examined QoL (CAReGiverOncology QoL questionnaire) and psychological distress (Hospital Anxiety and Depression Scale) prior to CAR-T (baseline) and at days 7, 30, 90, and 180 post-CAR-T. At baseline, caregivers and patients completed the Prognostic Awareness Impact Scale, which examines cognitive understanding of prognosis, emotional coping with prognosis, and adaptive response (ie, capacity to use prognostic awareness to inform life decisions). We enrolled 58% (69 of 120) of eligible caregivers. Caregivers reported QoL impairments that did not change over time (B = 0.09; P = .452). The rates of clinically significant depression and anxiety symptoms were 47.7% and 20.0%, respectively, at baseline, and 39.1% and 17.4% at 180 days. One-third (32%) of the caregivers and patients reported that their oncologist said the cancer is curable. Caregivers' greater emotional coping with prognosis was associated with fewer symptoms of anxiety (B = -.17; P < .001) and depression (B = -.02; P < .001). Cognitive understanding of prognosis and adaptive response were not associated with psychological distress. Caregivers reported QoL impairments throughout the study period. A substantial proportion of caregivers experienced psychological distress and reported misperceptions about the prognosis, highlighting the need for supportive care interventions.

Communication About Chimeric Antigen Receptor T-Cell (CAR-T) Therapy.

Chimeric Antigen Receptor T-cell (CAR-T) therapy has revolutionized the treatment of patients with hematologic malignancies, yet treatment may coincide with the potential for life-threatening toxicities. Currently, no studies have investigated how oncologists communicate with patients about CAR-T therapy or what patients and their caregivers want to know prior to consenting for CAR-T therapy. This study characterizes the content of oncologist communication with patients and caregivers about the risks and benefits of CAR-T therapy and explore the information preferences of patients and their caregivers about CAR-T therapy. We conducted a multimethod study of 20 patients with hematologic malignancies referred for CAR-T therapy at the Massachusetts General Hospital and 10 caregivers. We audio recorded the initial outpatient visit with the oncologist to review and sign consent for CAR-T therapy. We subsequently surveyed patients and caregivers about information gaps that remained after consent. We then interviewed patients and caregiver about their perceptions of oncologist communication and information preferences after the consent visit, 1 month, and 3 months post-CAR-T therapy treatment. Qualitative data analysis was conducted using the framework approach. Six major themes regarding communication about CAR-T therapy were identified: (1) oncologists create a narrative of power and innovation about CAR-T therapy, (2) oncologists set clear expectations regarding CAR-T therapy, (3) oncologists preferentially discuss positive treatment outcomes and less frequently address treatment failures or uncertainties, (4) oncologists couple their discussion about risks of CAR-T therapy with assurances about risk mitigation strategies, (5) oncologists engage in empathetic communication throughout the consent visit, (6) patients and caregivers vary in their preferences regarding communication about CAR-T therapy but largely favor a positive discourse during the consent visit and (7) patients who completed CAR-T therapy and their caregivers report significant knowledge gaps during and after treatment. Overall, patients and caregivers felt well informed about CAR T-therapy yet identified communication gaps regarding, advanced care planning, treatment failure and treatment toxicities. A predominantly positive discourse between patients, caregivers, and oncologists around CAR-T therapy leaves patients and caregivers with significant knowledge gaps about negative outcomes. Further research is needed to help oncologists communicate about treatment uncertainties and help patients and their caregivers prepare for negative outcomes of CAR-T therapy.

Social media use and health promotion among cancer survivors.

OBJECTIVE: Social media is becoming recognized as an effective platform for cancer health promotion, education, care, and support. However, its utility as a health promotion tool remains relatively unexplored. METHODS: Using cross-sectional data from the 2017-2020 Health Information National Trends Survey, we evaluated health-related usage of social media among cancer survivors and individuals without a history of cancer. We also examined the participant characteristics associated with social media usage and evaluated the relationship between social media use and positive health behaviors among the cancer survivors. RESULTS: Overall, cancer survivors (n = 2579) were as likely as individuals without a history of cancer to use social media for health promotion. Males [OR 0.65; 95% CI (0.45, 0.93)] and older adults (>60 years old) [OR 0.27; 95% CI(0.10, 0.77)] were less likely to use social media, while higher income [OR 2.27; 95% CI (1.05, 4.92) middle income; OR 1.90; 95% CI (1.17, 3.09) high income] and educational levels [OR 3.29; 95% CI (1.85, 5.84) some college; OR 2.36; 95% CI (1.30, 4.28) college graduate or more] were associated with more health-related social media use among survivors. Cancer survivors used social media for online support groups more than other individuals, and those who used at least one form of social media for health-related purposes increasingly meet national recommendations for strength training compared to non-users [OR 2.15; 95% CI (1.48, 3.13)]. CONCLUSIONS: Our findings demonstrate the potential utility of social media to promote positive health behaviors among cancer survivors. Further research is needed to describe the efficacy of social media-based interventions for improving health behaviors in diverse cancer populations.

Associations between Health-Related Use of Social Media and Positive Lifestyle Behaviors: Findings from a Representative Sample of US Adult Smokers.

Background: Cigarette smokers have elevated cardiovascular risk factors, which contributes significantly to mortality. Although social media is a potential avenue to deliver smoking interventions, its role in health promotion among smokers remains relatively unexplored.Objective: To examine the uptake and impact of health-related social media use in cigarette smokers.Methods: Using data from the 2017-2020 Health Information National Trends Survey, we evaluated differences in health-related social media use between smokers and nonsmokers. Multivariable logistic regression was performed to examine the association between social media use and positive health behaviors.Results: We included 1863 current smokers and 13,560 nonsmokers; Most participants were women (51.0%), White (64.6%), and 49.2% were aged ≥50 years. Smokers who used ≥1 social media site for health-related purposes in the past year were significantly more likely to meet the guideline recommendations for: (i) weekly physical activity (AOR 2.00, 95% CI 1.23-3.24), (ii) daily vegetable intake (AOR 2.48, 95% CI 1.10-5.59), and (iii) weekly strength training (AOR 1.80, 95% CI 1.10-2.94). However, the odds of reporting intentions to quit smoking (AOR 1.81, 95% CI 0.98-3.34) and attempts at smoking cessation (AOR 1.68, 95% CI 0.90-3.12) did not differ by health-related social media use.Conclusion: Smokers use social media for health-related purposes at comparable rates to nonsmokers. While our findings indicate that these platforms present a novel opportunity for health promotion among smokers, future research exploring the utility of social media in smoking cessation is crucial.

Political Ideology and Trust in Government Health Agencies for Cancer Information.

This cross-sectional study assesses the association between political ideology and trust in government health agencies for cancer information.

Coping and Perception of Prognosis in Patients With Indolent Non-Hodgkin's Lymphoma.

BACKGROUND: Indolent non-Hodgkin's lymphomas (iNHL) are a heterogenous group of mostly incurable diseases with prolonged illness courses and prognostic uncertainty. Yet, studies evaluating coping and perception of prognosis are limited. METHODS: We conducted a cross-sectional study of adults newly diagnosed with iNHL in the past 3 months at a single academic center. We assessed quality of life (QOL: Functional Assessment of Cancer Therapy-General), psychological symptoms (Hospital Anxiety and Depression Scale), coping (Brief-COPE), and perception of prognosis (Prognosis Awareness Impact Scale). RESULTS: We enrolled 70.6% (48/68) of eligible patients. Patients had older age (mean = 66.9,sd = 10.5), were female (60.4%), predominantly identified as White (85.4%), and had at least received a college degree (75%). Chronic lymphocytic leukemia (39.6%) and follicular lymphoma (33.3%) were the most common diagnoses. Overall, 27.1% and 14.6% of patients reported clinically significant anxiety and PTSD symptoms, respectively. Patients highly utilized acceptance (56.2%), seeking emotional support (47.9%), and denial (47.9%) as coping strategies at diagnosis. While 66.7% of patients recalled their oncologist assessment of illness as incurable, only 35.4% reported that the illness is unlikely to be cured. Overall, 45.8% indicated that they were worried about prognosis and 31.2% reported perseverating on their prognosis. Higher emotional coping with prognosis was associated with fewer anxiety (B = -0.6, SE = 0.2, P < .001), depression (B = -0.3, SE = .1, P = .005), and PTSD (B = -1.3, SE = 0.4, P < .001) symptoms and better QOL (B = 1.7, SE = 0.4, P < .001). DISCUSSION: Patients with iNHL report substantial psychological distress, a diversity of coping strategies, and complex cognitive understanding of their prognosis. Interventions, which address prognostic uncertainty and promote positive emotional coping with prognosis, may ameliorate psychological distress in this population.

Family Caregiver Experiences in the Inpatient and Outpatient Reduced-Intensity Conditioning Allogeneic Hematopoietic Cell Transplantation Settings: A Qualitative Study.

Caregivers (ie, family and friends) are essential in providing care and support for patients undergoing hematopoietic cell transplantation (HCT) and throughout their recovery. Traditionally delivered in the hospital, HCT is being increasingly provided in the outpatient setting, potentially heightening the burden on caregivers. Extensive work has examined the inpatient HCT caregiving experience, yet little is known about how caregiver experiences may differ based on whether the HCT was delivered on an inpatient or outpatient basis, particularly during the acute recovery period post-HCT. This study explored the similarities and differences in caregiver experiences in the inpatient and outpatient settings during the early recovery from reduced-intensity conditioning (RIC) allogeneic HCT. We conducted semistructured interviews (n = 15) with caregivers of adults undergoing RIC allogeneic HCT as either an inpatient (n = 7) or an outpatient (n = 8). We recruited caregivers using purposeful criterion sampling, based on the HCT setting, until thematic saturation occurred. Interview recordings were transcribed and coded through thematic analysis using Dedoose v.9.0. The study analysis was guided by the transactional model of stress and coping and the model of adaptation of family caregivers during the acute phase of BMT. Three themes emerged to describe similar experiences for HCT caregivers regardless of setting: (1) caregivers reported feeling like they were a necessary yet invisible part of the care team; (2) caregivers described learning to adapt to changing situations and varying patient needs; and (3) caregivers recounted how the uncertainty following HCT felt like existing between life and death while also maintaining a sense of gratitude and hope for the future. Caregivers also reported distinct experiences based on the transplantation setting and 4 themes emerged: (1) disrupted routines: inpatient caregivers reported disrupted routines when caring for the HCT recipient while simultaneously trying to manage non-caregiving responsibilities at home and work, and outpatient caregivers reported having to establish new routines that included frequent clinic visits with the patient while altering or pausing home and work responsibilities; (2) timing of caregiver involvement: inpatient caregivers felt more involved in care after the patient was discharged from the HCT hospitalization, whereas outpatient caregivers were already providing the majority of care earlier in the post-transplantation period; (3) fear of missing vital information: inpatient caregivers worried about missing vital information about the patient's care and progress if not physically present in the hospital, whereas outpatient caregivers feared overlooking vital information that may warrant contacting the care team as they monitored the patient at home; and (4) perceived adequacy of resources to meet psychosocial and practical needs: inpatient caregivers reported having adequate access to resources (ie, hospital-based services), whereas outpatient caregivers felt they had more limited access and needed to be resourceful in seeking out assistance. Inpatient and outpatient HCT caregivers described both similar and distinct experiences during the acute recovery period post-HCT. Specific interventions should address caregiver psychosocial needs (ie, distress, illness uncertainty, communication, and coping) and practical needs (ie, community resource referral, preparedness for home-based caregiving, and transplantation education) of HCT caregivers based on setting.

Psychosocial assessment practices for hematopoietic stem cell transplantation: a national survey study.

Psychosocial health predicts and contributes to medical outcomes for patients undergoing hematopoietic stem cell transplantation (HSCT). Yet, there are no standards for psychosocial assessments or support for both patients and caregivers across the care continuum. To examine the current state of psychosocial care, clinicians were sent a survey of their psychosocial assessment practices for patients and caregivers undergoing HSCT via the Listservs of professional organizations. Descriptive statistics and bivariate analyses were performed to summarize the findings. While 96% of participants reported routine pre-HSCT psychosocial assessment of patients, only 10.6% routinely used a validated transplant risk-assessment measure. Just 27% routinely performed follow-up psychosocial assessments. In contrast, only 47% of participants routinely assessed the psychosocial needs of family caregivers pre-HSCT, and 13% routinely performed follow-up assessments for caregivers. Most (90%) reported social workers were the primary providers of assessments. While patient-report measures were used for evaluation, the majority of assessments were clinical interviews. No significant differences were found between programs that treated adult and pediatric patients versus those only treating adult patients. Our findings highlight the lack of standard psychosocial practices for patients and family caregivers undergoing HSCT and we offer recommendations to fill this gap.

Medication Adherence in Patients with Hematologic Malignancies Who Are Hematopoietic Stem Cell Transplantation Survivors: A Qualitative Study.

Medication adherence is critical for optimal health outcomes in patients with hematologic malignancies who have undergone allogeneic hematopoietic stem cell transplants (HSCT). However, this population struggles with medication nonadherence. Research that comprehensively describes the complex patient- and medication-related factors which impact medication adherence in this population is lacking. Hence, we used semistructured qualitative interviews to explore the diverse and complex factors contributing to medication adherence in HSCT recipients. We conducted 30 in-depth interviews with patients who were more than 180 days post-allogeneic HSCT at the Dana-Farber Cancer Institute. The interviews explored the physical, social, psychological, and sociodemographic factors that facilitate or discourage adherence to the post-transplantation medication regimen. Interviews were audio-recorded, transcribed, and coded using NVivo software. Two themes emerged that characterized the barriers patients face with their medication regimen. Patients reported factors outside of their control, such as managing multiple pharmacies, health insurance difficulties, and dosage timing, as significant barriers to medication adherence. Patients also reported barriers within their control, such as familial responsibilities. Important facilitators for medication adherence included caregiver and clinician support, previous experience managing a medication regimen, and tools that aid pill organization and timing. Furthermore, patients reported that although medication side effects and quantity of pills did not directly impact medication adherence, it increased their psychological distress. Facilitators and barriers to medication adherence can be physical, psychological, organizational, and social. There are many aspects of medication regimens that significantly increase patient distress. Hence, supportive interventions to improve medication adherence in patients undergoing HSCT may need to incorporate strategies to manage medication side effects and skills to improve psychological well-being and social support.

Positive Psychological Well-Being in Hematopoietic Stem Cell Transplantation Survivors.

Positive thoughts and emotions contribute to overall psychological health in diverse medical populations, including patients undergoing HSCT. However, few studies have described positive psychological well-being (eg, optimism, gratitude, flourishing) in patients undergoing HSCT using well-established, validated patient-reported outcome measures. We conducted cross-sectional secondary analyses of baseline data in 156 patients at 100 days post-HSCT enrolled in a randomized controlled trial of a psychological intervention (ClinicalTrials.gov identifier NCT05147311) and a prospective study assessing medication adherence at a tertiary care academic cancer center from September 2021 to December 2022. We used descriptive statistics to outline participant reports of positive psychological well-being (PPWB) using validated measures for optimism, gratitude, positive affect, life satisfaction, and flourishing. The participants had a mean age of 57.4 ± 13.1 years, and 51% were male (n = 79). Many, but not all, participants reported high levels of PPWB (ie, optimism, gratitude, positive affect, life satisfaction, and flourishing), defined as agreement with items on a given PPWB measure. For example, for optimism, 29% of participants did not agree that "overall, I expect more good things to happen to me than bad." Aside from life satisfaction, mean PPWB scores were higher in the HSCT population than in other illness populations. Although many patients with hematologic malignancies undergoing HSCT report high levels of PPWB, a substantial minority of patients reported low PPWB (i.e., no agreement with items on a given PPWB measure). Because PPWB is associated with important clinical outcomes in medical populations, further research should determine whether an intervention to promote PPWB can improve quality of life in HSCT recipients.

Peer support interventions in patients with kidney failure: A systematic review.

BACKGROUND: Peer support has been associated with improved health-related outcomes (e.g., psychological well-being and treatment adherence) among patients with serious, chronic conditions, including kidney disease. Yet, there is little existing research evaluating the effects of peer support programs on health outcomes among patients with kidney failure being treated with kidney replacement therapy. METHODS: Following Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines, we conducted a systematic review using five databases to assess the effects of peer support programs on health-related outcomes (e.g., physical symptoms, depression) among patients with kidney failure undergoing kidney replacement therapy. RESULTS: Peer support in kidney failure was assessed across 12 studies (eight randomized controlled trials, one quasi-experimental controlled trial, and three single-arm trials) with 2893 patients. Three studies highlighted the links between peer support and improved patient engagement with care, while one found peer support did not significantly impact engagement. Three studies showed associations between peer support and improvements in psychological well-being. Four studies underscored the effects of peer support on self-efficacy and one on treatment adherence. CONCLUSIONS: Despite preliminary evidence of the positive associations between peer support and health-related outcomes among patients with kidney failure, peer support programs for this patient population remain poorly understood and underutilized. Further rigorous prospective and randomized studies are needed to evaluate how peer support can be optimized and incorporated into clinical care for this vulnerable patient population.

The influence of political ideology on clinical trial knowledge, invitation, and participation among adults in the United States.

BACKGROUND: Clinical trials remain a critical component of medical innovation. Evidence suggests that individuals' political ideologies may impact their health behaviors. However, there is a paucity of literature examining the relationship between political ideologies and clinical trial knowledge and participation. METHODS: Study data were derived from Health Information National Trends Survey 5 Cycle 4 (n = 3300), which was conducted from February to June 2020. We used participants' characteristics to estimate the prevalence of clinical trial knowledge and participation. We used multivariable logistic regressions to investigate whether political ideology had a significant impact on clinical trial knowledge and participation. Jack-knife replicate weights were applied for population-level estimates. RESULTS: Most participants were White (64.2%), earned above US$50,000 (62.4%), and lived in urban areas (88.0%). About 59.2% reported having some knowledge of clinical trials, and only 8.9% had ever been invited to participate in clinical trials. A total of 37.0%, 29.5%, and 33.5% of the population endorsed moderate, liberal, and conservative political viewpoints respectively. In the adjusted logistic regression analysis, compared to conservatives, liberals (adjusted odds ratio, 1.92; 95% confidence interval, 1.31-2.80) and moderates (adjusted odds ratio, 1.43; 95% confidence interval, 1.09-1.88) had significantly greater odds of having knowledge of clinical trials. Also, liberals had higher odds of receiving invitations to participate in clinical trials (odds ratio, 1.76; 95% confidence interval, 1.08-2.85; p = 0.023) and greater odds of trial participation (odds ratio, 3.90; 95% confidence interval, 1.47-10.33; p = 0.007) compared to moderates. CONCLUSIONS: The mechanism underlying the higher rates of clinical trial invitations to liberals is unclear and requires further comprehensive investigation. Similarly, further qualitative studies are needed to understand the attributes that promote knowledge and increased likelihood of clinical trial participation among liberals. This will provide crucial insight to help design interventions that further involve conservatives and moderates in clinical trials and scientific enterprise.