Perceptions of Hospice and Transfusion Access Among Patients with Advanced Blood Cancers: Results from a Best-Worst Scaling Survey

Background: Patients with hematologic malignancies have low rates of hospice use, and when they do enroll, they often do so in the last three days of life. While lack of access to transfusions in hospice has been posited to be a key barrier to hospice use for this population, data are lacking regarding the perception of patients with blood cancers about the importance of transfusion access compared to traditional hospice services. We sought to characterize the utility of transfusions and hospice services from the perspective of patients with advanced blood cancers, who would potentially be eligible for hospice care.

Methods: In October 2020, we began a web-based survey of patients with hematologic malignancies recruited from the clinics of two large cancer centers. Eligible patients were at least 18 years of age, had at least two outpatient visits to the cancer center, and had a physician-estimated prognosis of six months or less based on their hematologic oncologist answering "no" to a modified "surprise" question (Hudson KE, JPM 2018): "would you be surprised if this patient died within the next six months?" A physician-estimated prognosis of ≤ 6 months was used for study inclusion as this is an eligibility criterion for hospice. The survey was developed through literature review, a series of patient/caregiver focus groups (n=27) and cognitive debriefing with blood cancer patients (n=5). The survey included a best-worst scaling (BWS) section to assess patients' perceptions of the utility of various services routinely provided in hospice (visiting nurse, case manager, home health aide, chaplain, social worker, respite care) as well as non-routine services (transfusion access, transportation, peer support, telemedicine through videoconferencing). We asked patients to imagine a program developed to support quality of life for patients with blood cancers just like them. We then presented them with 10 questions with different combinations of the services in groups of 4 and participants were asked to select the service they considered "most important" and "least important" in deciding whether to sign up for the program. The BWS questions were constructed using a near balanced incomplete block design (Louviere JJ, Patient 2010). We conducted a hierarchical Bayesian analysis to ascertain a standardized utility score assigned to each service, a measure of the average propensity to choose a service as most important more often than least important. Analyses were conducted using Sawtooth (Sawtooth Software, Inc).

Results: As of July 2021, 102 patients had completed the survey (response rate: 64.6%). The median age of respondents was 71 years (IQR 63, 77). The majority of respondents were male, white, and married/living with partner (Table). The most common diagnosis was acute leukemia (38.2%). Patients considered access to blood transfusions to have the highest importance (Figure) with a standardized utility score of 21.1, 95% confidence interval [CI] [19.6-22.6], followed by telemedicine (19.4, 95% CI [17.8-20.9]), transportation to/from medical appointments (13.4, 95% CI 11.7-15.1), and visiting nurses (10.8, 95% [9.5-12.2]. The three least important services perceived by respondents were access to respite care (4.7, 95% CI [3.9-5.6]), social workers (4.5, 95% CI [3.5-5.5]), and chaplains (2.3, 95% CI [1.3-3.3]).

Conclusions: In this cohort of blood cancer patients who would potentially be eligible for hospice care, access to blood transfusions had the greatest level of importance relative to services routinely provided in hospice settings. The high value placed on transfusion access suggests that this factor plays a crucial role in hospice decision making. Accordingly, lack of transfusion access in many hospices likely reduces the propensity of patients with blood cancers to choose hospice. Innovative hospice delivery models that include access to palliative transfusions may have strong potential to increase hospice use and optimize end-of-life care for this patient population.

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