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While curing a patient's underlying disease is the primary goal of physicians performing hematopoietic cell transplantation (HCT), the ultimate objective is to provide patients with optimal post-HCT quality of life. For many survivors, this includes returning to work (RTW). We conducted a survey of 1- to 5-yr post-HCT survivors at our center to evaluate their perspective on facilitators and barriers to RTW as well as to gauge interest in potentially useful RTW support interventions. Survivors aged 18 to 65 yrs (n = 994) were sent an annual survey that included 36 supplementary questions about post-HCT RTW. Survey questions were selected from published national cancer survivor surveys and then modified specifically for HCT survivors. Three hundred forty-four (35%) survivors with a mean age of 53 yrs completed the survey, of whom 272 (79%) had worked prior to their diagnosis. Of those 272 patients, 145 (53%) were working currently and another 22 (8%) had attempted to go back to work following HCT but were not presently working. We found that having had an allogeneic versus autologous HCT (P = .006) was associated with a decreased likelihood of currently working, whereas frequent employer communication (>once a month) (P = .070) and having a more supportive employer (P = .036) were associated with a greater chance of currently working. Of survivors currently working, 45% reported that they had made one or more changes to their work schedule (e.g., flexible schedule or part-time work) or environment (e.g., work from home) upon RTW. Ninety-five percent of responders reported that they could have benefited from RTW support provided by the transplant center, but only 13% indicated that they had received it. Education on RTW challenges, information on disability benefits, and access to physical therapy were among the most requested support interventions. To improve post-HCT quality of life for survivors open to assistance, providers should address work status and goals, recognize barriers to successful return, and offer RTW support including working directly with employers. Allogeneic HCT survivors are particularly vulnerable to failing attempts to RTW and should be the target of retention interventions. A previously published manuscript on RTW guidance for providers of stem cell transplant patients endorsed by the American Society of Transplant and Cellular Therapy is available in Open Access and can be used as a tool to counsel and support these patients., (Copyright © 2024 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

Hematopoietic cell transplantation (HCT) health care providers report a desire to improve long-term outcomes and quality of life for their patients. One of the items frequently cited by patients in terms of transitioning from being a patient back to pre-HCT life is return to work (RTW). However, these patients report little support from their health care providers in facilitating this process, and only 50% to 60% achieve RTW, at a median of 3 years post-HCT. Barriers are physical, psychological, and logistical, as well as poor communication between the patient and their employer. We convened a group of experts in survivorship, rehabilitation, social work, and psychology to draft an evidence-based document to assist health care providers in guiding their patients' RTW journey. Guidance is drawn from the existing literature for HCT and general cancer patients and is divided into pre-HCT, peri-HCT, and post-HCT categories. Collaboration among health care providers, patients, and their employers is key to this transition. Suggested referrals and evaluations also are provided. The goal is for this guidance to be continually updated as we advance the field with more HCT-specific literature., (Copyright © 2022 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

Young adults (YA), age 18 to 39 years, are at a stage of life that may make them more vulnerable than older adults to impairments in health-related quality of life (HRQOL) during and after hematopoietic cell transplantation (HCT). Health self-efficacy (HSE), the belief that one can implement strategies to produce a desired health outcome, has been associated with health outcomes in oncology research. Little is known about HRQOL or HSE in YA HCT survivors compared with older HCT survivors. Given the age-specific psychosocial challenges facing YA HCT recipients and research on non-transplant YA cancer survivors, we hypothesized that YA survivors would have worse post-HCT HRQOL compared with older adults, and that among YA HCT survivors, higher levels of HSE would be associated with higher levels of HRQOL and lower levels of cancer-related distress. This was a cross-sectional secondary analysis of 2 combined baseline datasets from multicenter studies of HCT survivors approached for participation in clinical trials of survivorship interventions. Participants from 20 transplantation centers in the United States were at 1 to 10 years post-HCT and age ≥18 years at the time of study enrollment, had no evidence of disease relapse/progression or subsequent malignancies, and could read English adequately to consent for and complete assessments. Medical record and patient-reported data were obtained for demographics and HCT-related clinical factors and complications (eg, total body irradiation, chronic graft-versus-host disease [cGVHD]). Participants completed surveys on HRQOL, including the Short-Form [SF]-12, HSE, and Cancer and Treatment Distress (CTXD), which includes 6 subscales and reports an overall mean score. On the SF-12, both the Mental Component Score (MCS) and Physical Component Score (PCS) were calculated. Two cohorts were compared: YAs (age 18 to 39 years at transplantation) and older adults (age ≥40 years at transplantation). Multiple linear regression analyses identified factors associated with HSE, PCS, MCS, and CTXD in YAs. In this analysis of 979 survivors, compared with the older adults, the YA participants had lower median mental health scores (SF-12 MCS: 48.40 versus 50.23; P = .04) and higher cancer-related distress (CTXD: .96 versus .85; P = .04), but better physical health (SF-12 PCS: 48.99 versus 47.18; P = .049). Greater overall cancer-related distress was driven by higher levels of uncertainty, financial concern, and medical demand subscales for YAs compared with older adults. Young adults also had lower HSE (2.93 versus 3.08; P = .0004). In a multivariate model, HSE was strongly associated with age group (P = .0005) after adjusting for multiple other transplantation-related factors. Among YAs, HSE was associated with the SF-12 MCS and PCS and the CTXD, and HSE remained significant after adjusting for other transplantation-related factors. Overall, the YA HCT survivors had lower mental health, increased cancer-related distress, and lower levels of HSE compared with the older adults. Although the direction of these effects cannot be determined with these data, the strong association between HSE and HRQOL among YAs suggests that targeting interventions to improve HSE may have broad impact on health outcomes., (Copyright © 2022 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

Hematopoietic cell transplantation (HCT) survivors have a complex and multiphase recovery period. Health care delivery and psychosocial interventions for HCT survivors are challenging because many HCT recipients live great distances from the facility where they had their HCT. Therefore identifying factors associated with a patient's capability to self-manage symptoms is a significant focus of survivorship research. A patient's self-efficacy may be important for the successful management of major stressors associated with treatments and recovery. Here, we aimed to evaluate the impact of perceived self-efficacy on distress, quality of life (QoL), depression, and fatigue and identify the factors associated with lower self-efficacy. This cross-sectional study analyzed baseline data from a randomized controlled trial INSPIRE (NCT01602211) in adult (age 18 and older) survivors 2 to 10 years after HCT. Patients with recurrence or subsequent malignancy requiring cancer treatment during the 2 years before enrollment, inability to read and understand English, and lack of access to email and the Internet were excluded. Data included medical records and patient-reported outcomes including Cancer and Treatment Distress (CTXD) with 6 subscales, Patient Health Questionnaire depression scale (PHQ-8), Short Form 12 Health Survey (SF-12) physical function and mental function scores, Brief Fatigue Inventory (BFI) and Self-Efficacy. Pearson correlations were used to test bivariate associations for self-efficacy of CTXD, SF-12, BFI, and PHQ-8. General linear models were used to test the independent associations for CTXD and SF-12 outcomes with self-efficacy, controlling for selected sociodemographic and treatment covariates. Tenability of statistical model assumptions were examined, and no remediation was necessary. A total of 1078 HCT survivors were included in the analysis. Participants were 19 to 85 years (mean age 58), 53% male, and over 90% White and non-Hispanic. Only 16% reported living in a rural area. A majority received an autologous HCT (55%) and were less than 5 years from their first HCT (54%). Among the allogeneic HCT recipients, more than half (55%) had active chronic Graft-versus-Host (cGVHD) and nearly 40% were on active systemic treatment. The mean self-efficacy score was 3.01 (SD = 0.49). Female sex (P = .014), younger age at HCT, younger age at cGVHD presentation (P = .031), moderate to severe currently active cGVHD (P = .003) and household income less than $40,000 (P< .001) were associated with lower self-efficacy. In bivariate analyses, self-efficacy was negatively correlated with mean total distress (CTXD, r = -.5, P< .001) and each of the CTXD subscales. HCT survivors with higher self-efficacy also reported better physical (r 0.48, P< .001) and mental function on the SF-12 (r = 0.57, P< .001). Moreover, self-efficacy was negatively correlated with symptoms such as fatigue (r = -.44, P< .001) and depression (r = -.48, P< .001). In a regression model investigating the impact of self-efficacy on CTXD controlled for demographics and disease characteristics, lower self-efficacy was independently associated with higher distress (CTXD, β = -.232; 95% CI [-.294, -.169], P< .001). Moreover, there was a significant positive relationship between self-efficacy and both mental (β = 4.68; 95% CI [3.82, 5.54]; P< .001) and physical (β = 2.69; 95% CI [1.74, 3.64]; P< .001) components of QoL. Our study demonstrates that lower levels of self-efficacy reported by HCT survivors were independently associated with higher levels of symptoms such as fatigue and depression, lower QoL, and more cancer-related distress. Furthermore, self-efficacy was more likely to be impaired in females, younger adults, those with lower incomes, and survivors with active cGVHD. These findings support the value of self-management interventions focused on improving self-efficacy as having the potential to improve multiple symptoms and QoL in HCT survivors., (Copyright © 2022 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

The medical and psychological sequelae of hematopoietic cell transplantation (HCT) are well established, but less is known about the impact on intimate relationships. We sought to describe the prevalence of relationship distress among married HCT survivors and to identify factors associated with relationship distress. The study was cross-sectional. HCT survivors treated at a National Cancer Institute-designated cancer center completed a survey that included measures of psychological and relationship distress (Revised Dyadic Adjustment Scale [RDAS]), demographic, and medical factors. A total of 1047 respondents reported being married and completed the RDAS. Sample characteristics were a mean age of 58 years (range, 22 to 83 years), a mean interval post-HCT of 12.3 years (range, <1 to 43 years), 42% female, and 89% non-Hispanic white. RDAS total adjustment scores were comparable to published community sample values. Nineteen percent of the respondents were classified as relationship-distressed. Three factors were associated with greater odds of relationship distress: cancer and treatment distress (odds ratio [OR], 1.59; 95% confidence interval [CI], 1.09 to 2.31); depression (OR, 1.44; 95% CI, 1.17 to 1.76), and time post-transplantation (OR, 1.03; 95% CI, 1.01 to 1.04). These findings were qualified by sex-stratified analyses. Depression was associated with relationship distress among females; the other 2 variables were associated with relationship distress among males. Our results paint an overall picture of positive long-term marital functioning among HCT survivors, with a subset reporting relationship distress. Screening is warranted to identify survivors at risk for relationship distress and to inform targeted intervention., (Copyright © 2022 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

Allogeneic hematopoietic cell transplantation (HCT) requires a complex, multicomponent medical regimen after hospital discharge. Patients must manage multiple medications; care for their catheter; minimize exposure to sources of potential infection; follow diet, exercise, and self-care guidelines; and attend frequent follow-up medical appointments. Their caregivers are tasked with helping them manage the regimen. Despite the importance of this management in preventing adverse clinical outcomes, there has been little study of regimen nonadherence and its predictors. We sought to prospectively determine rates and predictors of nonadherence to components of the post-HCT medical regimen during the first 8 weeks after hospital discharge. Patients (n = 92) and their caregivers (n = 91) (total n = 183) completed interview assessments pre-HCT, and at 4 weeks and 8 weeks after hospital discharge post-HCT. Sociodemographic factors (eg, age, sex), patient clinical status (eg, disease type, donor type), patient and caregiver self-reported health-related factors (eg, medical comorbidities), and patient and caregiver psychosocial factors (eg, anxiety, depression, HCT task-specific and general self-efficacy, relationship quality) were assessed pre-HCT. Nonadherence to each of 17 regimen tasks was assessed at 4 and 8 weeks after hospital discharge via self and caregiver collateral reports. Nonadherence rates varied among tasks, with 11.2% to 15.7% of the sample reporting nonadherence to immunosuppressant medication, 34.8% to 38.6% to other types of medications, 14.6% to 67.4% to required infection precautions, and 27.0% to 68.5% to lifestyle-related behaviors (eg, diet/exercise). Nonadherence rates were generally stable but worsened over time for lifestyle-related behaviors. The most consistent nonadherence predictors were patient and caregiver pre-HCT perceptions of lower HCT task efficacy. Higher caregiver depression, caregiver perceptions of poorer relationship with the patient, having a nonspousal caregiver, and having diseases other than acute myelogenous leukemia also predicted greater nonadherence in 1 or more areas. Rates of nonadherence varied across tasks, and both patient and caregiver factors, particularly self-efficacy, predicted nonadherence. The findings highlight the importance of considering not only patient factors, but also caregiver factors, in post-HCT regimen nonadherence., (Copyright © 2021 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

Early detection of bronchiolitis obliterans syndrome (BOS) after allogeneic hematopoietic cell transplantation (HCT) depends on recognition of subclinical spirometric changes, which is possible only with frequent interval spirometry. We evaluated the feasibility of home monitoring of weekly spirometry via a wireless handheld device and a web monitoring portal in a cohort of high-risk patients for the detection of lung function changes preceding BOS diagnosis. In this observational study, 46 patients with chronic graft-versus-host disease or a decline in forced expiratory volume in 1 second (FEV 1 ) of unclear etiology after allogeneic HCT were enrolled to perform weekly home spirometry with a wireless portable spirometer for a period of 1 year. Measurements were transmitted wirelessly to a Cloud-based monitoring portal. Feasibility evaluation included adherence with study procedures and an assessment of the home spirometry measurements compared with laboratory pulmonary function tests. Thirty-six patients (78%) completed 1 year of weekly monitoring. Overall adherence with weekly home spirometry measurements was 72% (interquartile range, 47% to 90%), which did not meet the predetermined threshold of 75% for high adherence. Correlation of home FEV 1 with laboratory FEV 1 was high, with a bias of 0.123 L (lower limit, -0.294 L; upper limit, 0.541 L), which is within acceptable limits for reliability. Of the 12 patients who were diagnosed with BOS or suspected BOS during the study period, 9 had an antecedent FEV 1 decline detected by home spirometry. Our data indicate that wireless handheld spirometry performed at home in a high-risk HCT cohort is feasible for close monitoring of pulmonary function and appears to facilitate early detection of BOS., (Copyright © 2021 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

This investigation characterized sexual activity and sexual function in hematopoietic cell transplantation (HCT) survivors, compared them with norms, and examined factors associated with sexual dysfunction, with the goal of identifying targets for intervention to improve sexual health. Surviving adults from a large transplantation center were asked to complete an annual survey with a core of health questions and a module on sexual activity and function. Participants completed the Sexual Function Questionnaire, Cancer and Treatment Distress form, and Revised Dyadic Adjustment Scale. Clinical data were collected from the transplantation medical database. Multivariate logistic regressions identified factors associated with sexual activity and function. Participating survivors (n = 1742) were a mean of 11.9 years (range, .4 to 43.1 years) after HCT, mean age 57.6 years, and 53% male. Women were more likely than men to report being sexually inactive in the past year (39% versus 27%) and, among those sexually active, to report low sexual function (64% versus 32%). Male and female survivors reported lower rates of sexual activity and function than comparison norms (all P < .01). In regressions, factors associated with being sexually inactive included older age, having <4 years of college education, low performance status, and not being in a committed relationship. Additional factors for men included receipt of nonmyeloablative conditioning and not being employed or in school. Low sexual functioning for men and women was associated with low performance status, and, for women, a committed relationship of lower quality, while for men the association was with older age. Sexual dysfunction is common in both men and women after HCT, regardless of time since treatment. Survivors need routine evaluation and access to multimodal interventions., (Copyright © 2020 American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)