RPD317 - Quantifying the Level of Involvement and Training of Palliative Care Programs for Patients with Sickle Cell Disease

Key Message : Patients with sickle cell disease (SCD) experience substantial disease burden, including increased pain, psychosocial distress and mortality. Academic PC programs’ involvement in SCD and barriers haven’t been quantified. Most PC programs don’t routinely care for SCD patients, and many barriers constrain access. Training, resources, and consensus guidelines are needed.

Abstract: Background

Despite high symptom burden and limited lifespan associated with sickle cell disease (SCD), specialty palliative care (PC) services remain underutilized in this marginalized population (1, 2). The extent of routine involvement, barriers to care, and training in the care of SCD patients at academic PC programs in the United States has not been quantified.

Objective

To assess PC involvement and training in SCD care, identify barriers to access, and inform integration strategies.

Design/Setting

An anonymous Qualtrics survey, developed through literature review and expert panel was emailed to 180 palliative medicine fellowship program directors or surrogates (June 18-July 25, 2025) (3). The survey included demographics, program practices regarding SCD and other chronic conditions (cystic fibrosis, ALS and chronic nonmalignant pain), frequency of routine SCD education and perceived barriers to providing care to these patients.

Results

Fifty-one responses were received (28.3% response rate). Only 37% of programs routinely care for SCD patients (31.5% inpatient only, 10.5% outpatient, 58% both). Among these, 68% regularly prescribed opioids. Programs not routinely involved reported exceptions for patients with limited prognosis, comorbidities such as active cancer, or imminent end-of-life needs. The most common reported barriers to seeing patients with SCD were lack of outpatient resources (46%) and staffing constraints (44%). Free-text responses cited limited referrals, competing specialty ownership (hematology), institutional restrictions, and scope-of-practice limitations. Only 38% of programs included SCD in their fellowship curriculum, and 20% offered routine training for all PC team members.

Conclusions

Fewer than half of academic PC programs routinely care for SCD patients, and most programs lack formal SCD training. Institutional and systemic barriers limit access, highlighting the need for resources and education to expand PC integration into SCD care. There is a need for consensus guidelines stratifying PC involvement in SCD patients.

References: 1. Jayakumar J, Ginjupalli M, Rajarajan S, et al. Palliative Care Utilization in Sickle Cell Disease: A Nationwide Analysis of Its Trends, and Impacts. Blood 2024;144:5317–5317.

2. Nwogu-Onyemkpa E, Dongarwar D, Salihu HM, et al. Inpatient palliative care use by patients with sickle cell disease: a retrospective cross-sectional study. BMJ Open 2022;12:e057361.

3. ERAS 2026 Participating Specialties & Programs. Available from: https://systems.aamc.org/eras/erasstats/par/display.cfm?NAV_ROW=PAR&SPEC_CD=540. Accessed July 10, 2024.