Understanding the Landscape of Palliative Care Integration in the Care of People Affected by Sickle Cell Disease

Key Message: This session will present findings from the 2025 inaugural Palliative Care (PC) in Sickle Cell Disease (SCD) Summit, in which 58 experts representing 42 institutions across the United States convened to characterize the current landscape of PC/SCD integrated care models and discuss strategies to build and expand collaborative PC-SCD partnerships.

Abstract: Background
Sickle cell disease (SCD) is a serious illness characterized by physical, psychosocial, spiritual, and existential suffering, exacerbated by health and healthcare disparities due to systemic racism (1, 2). Many patients with SCD face extensive morbidities, early mortality, difficult treatment decisions, and complex care coordination. Palliative care (PC) teams are well positioned to provide holistic, multidisciplinary, longitudinal support to improve quality of life (QOL) for people with SCD. As the benefits of early PC integration for people with chronic, life-limiting illnesses are increasingly recognized, PC remains underutilized for people with SCD despite repeated calls for its integration (3–5).

Approach
To address this gap, the inaugural Palliative Care in Sickle Cell Disease Summit convened in June 2025, comprised of a group of 58 interprofessional clinicians from 42 institutions across the United States with expertise integrating PC in SCD across pediatric and adult settings. Participants engaged in large- and small-group discussions to characterize existing PC-SCD collaborations and identify strengths, weaknesses, opportunities, and threats to PC integration in SCD. In this presentation, we will report key findings from the Summit to aid the development and expansion of PC integration in SCD in nationally grounded in principles of justice and equity. We will present strategies to guide the growth of PC-SCD collaborations across institutions, describe novel and adaptable models of PC integration in SCD, and share approaches to mitigate healthcare disparities which can be leveraged by partnered PC and SCD teams.

Implications
PC teams can help improve QOL for people affected by SCD. Findings from the Summit offer a roadmap for actionable strategies to integrate PC and SCD with the goal of enhancing provision of equitable, culturally responsive care for this uniquely vulnerable population.

This work is presented on behalf of The Palliative Care in Sickle Cell Disease Summit Planning Committee and participants.

References: 1. Osunkwo I, Andemariam B, Minniti CP, et al. Impact of sickle cell disease on patientsʼ daily lives, symptoms reported, and disease management strategies: Results from the international Sickle Cell World Assessment Survey (SWAY). American Journal of Hematology 2021;96:404–417.
2. Smith WR, Valrie C, Sisler I. Structural Racism and Impact on Sickle Cell Disease. Hematology/Oncology Clinics of North America 2022;36:1063–1076.
3. McClain BC, Kain ZN. Pediatric Palliative Care: A Novel Approach to Children With Sickle Cell Disease. Pediatrics 2007;119:612–614.
4. Wilkie DJ, Johnson B, Mack AK, Labotka R, Molokie RE. Sickle cell disease: an opportunity for palliative care across the life span. Nurs Clin North Am United States 2010;45:375–397.
5. Ajayi TA, Edmonds KP, Thornberry K, Atayee RA. Palliative Care Teams as Advocates for Adults with Sickle Cell Disease. Journal of Palliative Medicine 2016;19:195–201.