The role of palliative care in sickle cell disease: A single database literature review of contemporary outcomes data

Abstract Introduction: Patients with sickle cell disease (SCD) have been shown to have significantly reduced life expectancy relative to the average American. This patient population has also been found to be significantly burdened by chronic symptoms, and psychosocial stressors, that impair quality of life. With the medical community at large increasingly aware of the challenges faced by the SCD community, and of the unique function that the palliative care model plays in the healthcare system, there are frequent calls for there to be a role for palliative care in the management of SCD. However, there may continue to be an unmet need for high quality studies establishing an evidence base for integrating palliative care into the management of SCD. Objectives: To review the available literature for the presence of studies exploring outcomes in SCD patients who are under the management of a multidisciplinary palliative care team. Methods: This is a single database review implementing a search of MEDLINE via PubMed with terms (“Sickle Cell Disease” [MESH Majr Topic] AND “Palliative” [MESH Majr Topic]). Separate searches were made for articles published in English between January 01, 2004 and January 01, 2014 and for articles published between January 01, 2014 and January 01, 2024 without restrictions. Articles were screened for appropriateness of content and then stratified based on the conclusions derived. A descriptive analysis was performed in accordance with the PRISMA-ScR Checklist. Results: The search produced seven articles from 2004 to 2014. Of these, three were full length narrative reviews suggesting that palliative care would benefit patients with SCD. No articles explored outcomes in SCD patients receiving palliative care. The search produced seven articles from 2014 to 2024. Three articles were full length narrative reviews suggesting that palliative care would benefit patients with SCD. One article was a full-length cross-sectional study finding limited implementation of inpatient palliative care for SCD patients. No articles explored outcomes in SCD patients receiving palliative care. Conclusion: The medical literature continues to support the argument that patients with SCD would benefit from the involvement of palliative care. However, high quality research demonstrating outcome modification or changes in resource allocation as a result of the involvement of palliative care in the management of SCD patients remains largely absent in the literature. Improvements in this regard could provide the support for the ongoing calls to create more models of specialized multidisciplinary care for SCD patients. Limitations of this research include selection and framing biases related to the keywords and filters used.