Care of Children With Sickle Cell Disease in the Emergency Department: Parent and Provider Perspectives Inform Quality Improvement Efforts

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Abstract

Children with sickle cell disease (SCD) present to the emergency department (ED) with complex medical and behavioral health needs. Little research has been conducted to understand elements necessary to provide a comprehensive approach. We conducted 9 focus groups and 2 individual interviews with ED nurses, ED physicians, parents, 1 SCD nurse practitioner, and 1 SCD hematologist in 6 states. The primary aim of the study was to assess the appropriateness of the Emergency Department Sickle Cell Assessment of Needs and Strengths for pediatric patients. Participants were asked to discuss important aspects of ED management. Transcripts were analyzed according to 5 key decision points, and common themes were identified for each decision. Decisions included triage, analgesic management, diagnostic evaluation, disposition, and high risk evaluation and referrals needed at discharge. Participants identified critical areas that can be used to organize and improve the assessment, management, and disposition/referral decisions in order to provide better care to children with SCD in the ED. Parent input was critical for each decision.

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