Abstract
Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT). Despite these improvements in patient-centered outcomes, PC is under-utilized in the care of patients undergoing HSCT. We hypothesized that this may in part be due to transplant physicians' perceptions and attitudes about PC, which have not been fully elucidated.
Methods: We conducted a cross-sectional, web-based survey of transplant physicians who care for patients with hematologic diseases in January-February 2017. Participants were recruited from the American Society for Blood and Marrow Transplantation (ASBMT) membership list. Using a 28-item questionnaire adapted from prior studies of medical oncologists, we examined transplant physicians' 1) access to PC services; 2) perceptions and attitudes about PC; and 3) perceptions of the unmet PC needs of HSCT patients and their caregivers.
Results: Of 1005 eligible physicians, 277 transplant physicians completed the questionnaire yielding a response rate of 28%. The majority were white (194/277, 70%), not Hispanic or Latino (194/277, 70%), and male (179/277, 65%). All regions in the United States were represented. Most physicians (179/277, 65%) provided care to adult patients, with 28% (77/277) to pediatric patients and 8% (21/277) to both groups. The majority (159/277, 57%) provided care to both non-HSCT and HSCT patients, with 43% (118/277) to HSCT patients only. Overall, 36% (101/277) had < 10 years of practice, 29% (80/277) had 10-20 years, and 35% (96/277) had > 20 years in practice. Physicians collaborated with PC services more often for inpatient (121/277, 44%) than outpatient care (57/277, 21%). The quality of inpatient and outpatient PC services were considered excellent by 45% (124/77) and 30% (82/277) of physicians, respectively. Only 14% (39/277) reported collaborating often with home hospice services. Most physicians (233/277, 84%) felt that they should coordinate the care of their patients across all stages of disease including at the end of life (EOL). The majority (210/277, 76%) stated that they trust PC clinicians to care for their patients, but 40% (110/277) agreed that PC clinicians do not have enough understanding to counsel their HSCT patients regarding their treatment. Most expressed concerns about how patients perceive PC [Figure 1 and Figure 2]. For example, 82% (227/277) of physicians reported that when patients hear the term PC, they feel scared. In addition, 65% (180/277) reported that if a PC referral is suggested, patients might think nothing more can be done for their disease. The majority of transplant physicians reported that the service name 'palliative care' is a barrier to PC utilization [Figure 3]. However, most physicians recognized substantial unmet PC needs in their population including 1) physical symptoms (56%); 2) graft-versus-host disease symptoms (51%), 3) emotional and psychological needs (71%); 4) spiritual needs (63%); 5) preparing for future medical care (65%); and 6) supporting family and friends (69%).
Conclusions: Despite reporting immense PC needs for HSCT patients, transplant physicians have a strong sense of commitment to address these needs. While the majority of respondents reported trusting PC, they also expressed substantial concerns about PC clinicians' knowledge about HSCT. In addition, most transplant physicians were concerned about patients' perception of the term 'palliative care'. Interventions are needed to promote collaboration, improve perceptions, and enhance integration of PC for transplant recipients.
LeBlanc: Boehringer Ingelheim: Membership on an entity's Board of Directors or advisory committees; American Cancer Society: Research Funding; AstraZeneca: Research Funding; Cambia Health Foundation: Research Funding; Pfizer: Consultancy; Janssen: Honoraria; Helsinn Therapeutics: Consultancy, Honoraria; Seattle Genetics: Research Funding; Flatiron Health: Consultancy; Otsuka: Membership on an entity's Board of Directors or advisory committees; Celgene: Honoraria.
