Sickle Cell Disease Providers' Perspectives on Palliative Care

Outcomes 1. Identify facilitators and barriers to palliative care referrals by sickle cell disease providers. 2. Utilizing results from the studies, participants will identify strategies to increase collaboration between palliative care and sickle cell disease providers. Key Message Despite healthcare providers acknowledging the potential benefits of palliative care for patients with sickle cell disease, its utilization within this population remains limited. Conducting studies to identify and address the barriers to the integration of palliative care in sickle cell disease is imperative. Abstract Sickle cell disease (SCD) a genetic blood disorder that affects primarily African Americans leads to premature death by up to 30 years. Sickle cell disease is characterized by acute and chronic pain, depression, anxiety, fatigue, existential distress, and social isolation. Patients with SCD require a multidisciplinary approach to provide comprehensive care that addresses not only their disease management but also their symptoms and psychosocial needs. Palliative care (PC) intervention is a promising opportunity to address the suffering in this patient population. However, the use of specialist PC services in SCD is low and introduced late in the disease course. (1) Objective We sought to explore SCD providers' perceptions and attitudes about PC. Methods We conducted a cross-sectional survey of SCD providers. Using a 47-item Likert survey, we examined providers' frequency of collaboration with PC and their awareness, perceptions, and attitudes about PC. We performed exploratory factor analysis which resulted in identification of seven domains. The internal consistency reliability of each domain was tested using Cronbach's alpha, and composite scores were calculated for the domains. Correlation analysis was performed to explore the relationships between the domains. Results 86 providers completed the survey. Overall, SCD providers had a positive attitude about PC and 84% stated that their patients would benefit from PC. SCD providers reported a low frequency of collaboration with PC teams. SCD providers reported a high frequency of involvement in symptom management but a low frequency of involvement in end-of-life issues. Conclusion SCD providers have a positive perception of PC but may face barriers in referrals to PC teams. Understanding these barriers could lead to the development of effective models for integrating early PC in SCD. Keywords Interdisciplinary Teamwork / Professionalism / Diversity, Equity, Inclusion, Belonging, Justice