A projected shortage of hematopoietic cell transplantation (HCT) health professionals was identified as a major issue during the National Marrow Donor Program/Be The Match System Capacity Initiative. Work-related distress and work-life balance were noted to be potential barriers to recruitment/retention. This study examined these barriers and their association with career satisfaction across HCT disciplines. A cross-sectional, 90-item, web-based survey was administered to advanced practice providers, nurses, physicians, pharmacists, and social workers in 2015. Participants were recruited from membership lists of 6 professional groups. Burnout (measured with the Maslach Burnout Inventory subscales of emotional exhaustion and depersonalization) and moral distress (measured by Moral Distress Scale-Revised) were examined to identify work-related distress. Additional questions addressed demographics, work-life balance, and career satisfaction. Of 5759 HCT providers who received an individualized invitation to participate, 914 (16%) responded; 627 additional participants responded to an open link survey. Significant differences in demographic and practice characteristics existed across disciplines (P < .05). The prevalence of burnout differed across disciplines (P < .05) with an overall prevalence of 40%. Over one-half of pharmacists had burnout, whereas social workers had the lowest prevalence at less than one-third. Moral distress scores ranged from 0 to 336 and varied by discipline (P < .05); pharmacists had the highest mean score (62.9 ± 34.8) and social workers the lowest (42.7 ± 24.4). In multivariate and univariate analyses, variables contributing to burnout varied by discipline; however, moral distress was a significant contributing factor for all providers. Those with burnout were more likely to report inadequate work-life balance and a low level of career satisfaction; however, overall there was a high level of career satisfaction across disciplines. Burnout, moral distress, and inadequate work-life balance existed at a variable rate in all HCT disciplines, yet career satisfaction was high. These results suggest specific areas to address in the work environment for HCT health professionals, especially the need for relief of moral distress and a greater degree of personal time. As the creation of healthy work environments is increasingly emphasized to improve quality care and decrease costs, these findings should be used by HCT leadership to develop interventions that mitigate work-related distress and in turn foster recruitment and retention of HCT providers.

In 2015 the National Institutes of Health (NIH) convened six working groups to address the research needs and best practices for patient-centered late effects of hematopoietic stem cell transplantation (HCT) survivors. The Patient-Centered Outcomes Working Group, charged with summarizing the HRQOL evidence base, used a scoping review approach to efficiently survey the large body of literature in adult and pediatric HCT survivors over 1 year after transplantation. The goals of this paper are to 1) summarize the current literature describing patient-centered outcomes (PCO) in survivors including the various dimensions of healthrelated quality of life affected by HCT and describe interventions tested to improve these outcomes; 2) highlight areas with sufficient evidence allowing for integration into standard practice; 3) address methodological issues that restrict progress in this field; 4) identify major gaps to guide future research; and 5) specify priority research recommendations. PCOs were summarized within physical, psychological, social and environmental domains, as well as for adherence to treatment, and health behaviors. Interventions to improve outcomes were evaluated for evidence of efficacy, although few interventions have been tested in long-term HCT survivors. Methodologic issues defined included lack of consistency in the selection of PCO measures, along with the absence of a standard for timing, frequency, and mode of administration. Recommendations for HCT survivorship care included: integration of annual screening of PCOs; use of evidence based practice guidelines; and provision of treatment summaries and survivorship care plans after HCT. Three priority research recommendations included: 1) Design and test risk-targeted interventions with dose intensity modulation matching the needs of HCT survivors with priority domains including sexual dysfunction, fatigue, sleep disruption, non-adherence to medications & recommended health care, health behaviors including physical inactivity and healthy eating, and psychological dysfunction, with particular consideration of novel technologies to reach HCT survivors distant from their transplant centers, 2) Design a consensus based methodologic framework for outcomes evaluation, and 3) Evaluate and compare existing practices for integrating PCOs screening and interventions across HCT survivorship programs.

There is a lack of multi-center cost-identification studies for hematopoietic cell transplantation (HCT). We used a single longitudinal administrative claims database representing a national, commercially insured population to evaluate the feasibility of identifying HCT recipients and to establish a cohort of autologous and allogeneic HCT recipients to study inpatient and outpatient direct medical costs from transplant hospitalization through first 100 days post-transplantation. Using ICD-9 procedure and diagnosis codes, we identified 3,365 patients who had received their first transplant in the United States between 2007 and 2009 (autologous-1,678, allogeneic-1,320, graft source not specified-367). The median 100-day total costs for autologous HCT were $99,899 (interquartile range [IQR], $73,914–140,555) and for allogeneic HCT were $203,026 (IQR, $141,742–316,426). The majority of costs (>75%) occurred during the initial transplant hospitalization for both autologous and allogeneic HCT recipients. Costs were greater among pediatric (≤ 20 years) compared to adult (>20 years) recipients and this difference was more pronounced with allogeneic HCT. Using a claims database representing a national HCT population, we highlight the high costs associated with autologous and allogeneic HCT. Our study lays the foundation for using claims data for future research on economic aspects of HCT.

Hematopoietic cell transplantation (HCT) is a highly specialized, expensive and resource-intense medical procedure that can be associated with racial disparities. We review the prevailing literature on racial disparities in HCT in the United States and describe areas for future research and interventions. We discuss the complexity of interpreting race as a biological and social determinant of disease in biomedical research, especially as it relates to HCT. In the United States, race is often a surrogate for socioeconomic, education and health insurance status. We also discuss some of the nuances to consider while reviewing the literature on racial disparities. Disparities by race exist in three areas related to HCT: donor availability, access to HCT and outcomes of HCT. African-Americans/Blacks have a lower likelihood of finding an unrelated donor. Race and ethnicity definitions are country-specific and reconciling race data can represent significant challenges to unrelated donor registries worldwide. African-Americans/Blacks do not have the same access to autologous and allogeneic HCT as Whites. Racial disparities in outcomes of HCT are more prevalent among allogeneic HCT than autologous HCT recipients. More research is required to understand the biological, social, cultural, medical and financial aspects of race that may influence access to HCT and survival after transplantation. Better understanding of racial disparities will minimize inequities, inform health policy, guide development of interventions targeted to eliminate disparities and ensure equitable access to HCT for all populations.

Hematopoietic cell-transplantation (HCT) is a highly specialized and resource-intense medical procedure that can be associated with disparities in access to transplantation. Barriers to access to HCT are multifactorial, complex and interrelated. Our current knowledge of specific barriers that prevent access to HCT is very limited. As the utilization of HCT increases, it is imperative that underserved populations receive the benefit of this life-saving procedure. We review the prevailing literature on access to HCT and describe research priorities for eliminating disparities in transplantation. Better understanding of these complex barriers will minimize inequities, inform health policy, guide development of interventions targeted to eliminate disparities and continue the expansion of HCT in the future.

Background Despite its established benefits, palliative care (PC) is rarely utilized for hematopoietic stem cell transplant (HSCT) patients. We sought to examine transplant physicians’ perceptions of PC. Methods We conducted a cross-sectional survey of transplant physicians recruited from the American-Society-for-Blood-and-Marrow-Transplantation. Using a 28-item questionnaire adapted from prior studies, we examined physicians’ access to PC services, and perceptions of PC. We computed a composite score of physicians’ attitudes about PC (mean=16.9, SD=3.37) and explored predictors of attitudes using a linear mixed model. Results 277/1005 (28%) of eligible physicians completed the questionnaire. The majority (76%) stated that they trust PC clinicians to care for their patients, but 40% felt that PC clinicians do not have enough understanding to counsel HSCT patients about their treatments. Most endorsed that when patients hear the term PC, they feel scared (82%) and anxious (75%). Nearly half (45%) reported that the service name ‘palliative care’ is a barrier to utilization. Female sex (β=0.85, P=0.024), having <10 years of clinical practice (β=1.39, P=0.004), and perceived quality of PC services (β=0.60, P<0.001) were all associated with a more positive attitude towards PC. Physicians with a higher sense of ownership over their patients’ PC issues (β=−0.36, P <0.001) were more likely to have a negative attitude towards PC. Conclusions The majority of transplant physicians trust PC, but have substantial concerns about PC clinicians’ knowledge about HSCT and patients’ perception of the term ‘palliative care’. Interventions are needed to promote collaboration, improve perceptions, and enhance integration of PC for HSCT recipients.

Interest is growing in economic and comparative effectiveness analyses, with increasing emphasis on optimizing healthcare resources and costs. Limited information is available on the economic aspects of hematopoietic cell transplantation (HCT). We review contemporary literature on the costs and cost-effectiveness of HCT in the United States and worldwide. Published studies confirm the high costs associated with HCT, although the reported costs are highly variable, related to the differing methodologies used across studies. We examine the challenges in reviewing costs and cost-effectiveness across studies specific to HCTand highlight factors identified as associated with higher costs of HCT. We also discuss opportunities for future research in this area.

Patient/caregiver out-of pocket costs associated with hematopoietic-cell transplantation (HCT) are not well known. We conducted a pilot study to evaluate patient/caregiver out-of-pocket costs in the first 3 months after allogeneic HCT. Thirty patients were enrolled at three sites. Prior to HCT, participants completed a baseline survey regarding household income and insurance coverage. Subsequently, they maintained a paper-based diary to track daily out-of-pocket expenses for the first 3 months after HCT. Telephone interviews were conducted to followup on missing/incomplete diaries and on study completion. Twenty-five patients/caregivers completed the baseline survey. Among these, the median pre-tax household income was $66,500 (range, $30-$375,000) and 48% had to temporarily relocate close to the transplant center. Insurance coverage was managed care plan (56%), Medicaid (20%), Medicare (17%) and other (8%). Twenty-two patients/caregivers completed ≥4 diaries; the median out-of-pocket expenses were $2,440 (range, $199-$13,769). Patients/caregivers who required temporary lodging had higher out-of-pocket expenses compared to those who did not (median, $5,247 vs. $716). Patients/caregivers can incur substantial out-of-pocket costs over the first 3 months, especially if they need to temporarily relocate close to the transplant center. Our study lays the foundation for future research on early and long-term financial impact of allogeneic HCT on patients/caregivers.