A Survey-Based Needs Assessment of Barriers to Optimal Sickle Cell Disease Care in the Emergency Department.

Journal Article (Journal Article)

Study objective

Guided by an implementation science framework, this needs assessment identifies institutional-, provider-, and patient-level barriers to care of sickle cell disease (SCD) in the emergency department (ED) to inform future interventions conducted by the multicenter Sickle Cell Disease Implementation Consortium.


The consortium developed and implemented a validated needs assessment survey administered to a cross-sectional convenience sample of patients with SCD and ED providers caring for them. In total, 516 adolescents and adults with SCD and 243 ED providers from 7 and 5 regions of the United States, respectively, responded to the ED care delivery for SCD survey.


Survey results demonstrated that 84.5% of respondents with SCD have an outpatient provider who treats many patients with SCD. In the ED, 54.3% reported not receiving care fast enough and 46.0% believed physicians did not care about them and believed similarly of nurses (34.9%). Consequently, 48.6% of respondents were "never" or "sometimes" satisfied with their ED care. Of surveyed ED providers, 75.1% were unaware of the National Heart, Lung, and Blood Institute recommendations for vaso-occlusive crises, yet 98.1% were confident in their knowledge about caring for patients with SCD. ED providers identified the following factors as barriers to care administration: opioid epidemic (62.1%), patient behavior (60.9%), crowding (58.0%), concern about addiction (47.3%), and implicit bias (37.0%).


The results underscore that many patients with SCD are dissatisfied with their ED care and highlight challenges to optimal care on the practice, provider, and patient levels. Exploring these differences may facilitate improvements in ED care.

Full Text

Duke Authors

Cited Authors

  • Linton, EA; Goodin, DA; Hankins, JS; Kanter, J; Preiss, L; Simon, J; Souffront, K; Tanabe, P; Gibson, R; Hsu, LL; King, A; Richardsona, LD; Glassberg, JA; Sickle Cell Disease Implementation Consortium,

Published Date

  • September 2020

Published In

Volume / Issue

  • 76 / 3S

Start / End Page

  • S64 - S72

PubMed ID

  • 32928465

Pubmed Central ID

  • PMC7511000

Electronic International Standard Serial Number (EISSN)

  • 1097-6760

International Standard Serial Number (ISSN)

  • 0196-0644

Digital Object Identifier (DOI)

  • 10.1016/j.annemergmed.2020.08.013


  • eng