Exploration of Barriers and Facilitators to Optimal Emergency Department Care of Sickle Cell Disease: Opportunities for Patient–Physician Partnerships to Improve Care

Abstract

Sickle cell disease patients commonly present to an emergency department (ED) due to acute vaso-occlusive pain episodes (VOEs), also known as vaso-occlusive crises (VOCs). Unsatisfactory patient care leads to preventable morbidity, mortality, and substantial financial costs. This study investigated the current use of sickle cell disease patient-directed physician education (PDPE) in the clinical setting and also explored opportunities for improvement. A qualitative phenomenologic design was used with semi-structured in-depth interviews. Open-ended questions were used to probe participant’s experiences with EDs, the feasibility of a PDPE program as well as barriers and facilitators to PDPE. A total of nine patients and eight physicians participated in the study. Three major themes were identified: divergent challenges to patient recommendations, new targets for sickle cell disease education and triage process: not heard and not seen. Numerous challenges exist to the implementation and optimization of PDPE with sickle cell disease triage processes and nursing support identified as influential factors. Paramount to the process of improving PDPE is physicians perceiving patients as credible sources of information, especially as it relates to generalized concerns of opioid dosing. A patient provided written or digital education tool can be considered to facilitate PDPE to ease communication strain on patients while increasing communication efficiency.

Keywords:

• Patient education
• medical education
• sickle cell disease

Acknowledgments

The authors thank Mr. Ben Umakanthan (Department of Cancer Education, Cancer Health Literacy Research Centre, Princess Margaret Cancer Centre, Toronto, Ontario, Canada) for his contributions in preparing the manuscript.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Additional information

Funding

This study was supported by the Princess Margaret Cancer Education Research & Innovation Seed Grant Award. The funding source had no involvement in the study design, collection, analysis and interpretation of data, writing of the report or decision to submit the article for publication.