How to Integrate Palliative Care into Sickle Cell Disease Management

Sickle cell disease (SCD) is a genetic blood disorder that disproportionately affects African Americans, leading to increased morbidity and mortality. Historically considered a childhood disease, most individuals with SCD now live into adulthood. As life expectancy increases, so has the prevalence of chronic organ dysfunction, including pulmonary hypertension, chronic kidney disease, and iron overload in SCD. People living with this serious illness experience significant physical and emotional symptom burdens, and report lower health-related quality of life compared to the general population and other chronic diseases like cystic fibrosis. Meanwhile, palliative care presents a promising opportunity to address suffering and improve the quality of life for patients with SCD; however, the use of specialist palliative care services in SCD remains low and is typically introduced late in the disease course.

In this Interprofessional Grand Rounds session, the presenters explored the role and impact of palliative care integration in SCD management. Told through the lens of a patient story from their inpatient palliative care service at Baylor St. Luke’s Medical Center, the speakers explored the impact of emerging therapies, describe strategies to collaborate with sickle cell specialists, and more.