Faculty, Staff and Student Publications
Publication Date
1-1-2025
Journal
The Journal of Sickle Cell Disease
DOI
10.1093/jscdis/yoaf030
PMID
41024865
PMCID
PMC12476912
Abstract
Objectives: Palliative care (PC) is rare for patients with sickle cell disease (SCD). This study evaluated clinician attitudes toward PC for SCD.
Methods: A cross-sectional survey was conducted between October 2022 and February 2023. Clinicians were recruited from institutions across the United States.
Results: Eighty-six participants completed the survey. Most were physicians (90%), female (72%), had >10 years of experience (63%), and lacked prior PC training (57%). Most participants agreed (83%) that patients with SCD would benefit from PC, disagreed (99%) that PC is only for dying patients, and expressed interest (91%) in learning about PC interventions. Clinicians with prior PC training were more likely to agree that patients with SCD would benefit from PC (p = 0.016). Most participants thought patients referred to PC would worry about discussions on dying (76%), might feel abandoned (63%), might feel greater control (59%), and would feel cared for by their SCD provider (65%). Survey responses indicated that 41% and 63% of participants had never worked with PC in a collaborative care inpatient or outpatient setting, respectively.
Conclusion: Clinicians caring for patients with SCD recognize the potential benefits of PC, although they are unsure about patient responses to PC referrals. Collaborative care teams of SCD and PC specialists are rare. Educating clinicians and patients with SCD about PC is urgently needed to encourage greater collaboration among care teams, particularly in outpatient settings. Strengthened collaborations between SCD and PC specialists could enhance holistic support and quality of life for patients with SCD.
Keywords
sickle cell disease, palliative care, quality of life, symptom management, supportive care, multidisciplinary care
Published Open-Access
yes
Recommended Citation
Nwogu-Onyemkpa, Eberechi; Amspoker, Amber B; Saleem, Nimrah; et al., "Clinician Attitudes Toward Palliative Care to Enhance the Quality of Life for Patients With Sickle Cell Disease" (2025). Faculty, Staff and Student Publications. 1286.
https://digitalcommons.library.tmc.edu/uthsph_docs/1286