Hydroxyurea therapy for children with sickle cell disease: describing how caregivers make this decision.

• Type of Material: Article
• Authors: Susan Creary, Emory University; Susan Zickmund, Emory University; Diana Ross, Emory University; Lakshmanan Krishnamurti, Emory University; Debra L. Bogen, Emory University
• Language: English
• Date: 2015-08-25
• Publisher: BioMed Central
• Publication Version: Final Published Version
• Copyright Statement: © Creary et al. 2015
• License: Creative Commons Attribution 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1186/s13104-015-1344-0
• Title of Journal or Parent Work: BMC Research Notes
• ISSN: 1756-0500
• Volume: 8
• Issue: 1
• Start Page: 372
• End Page: 372
• Grant/Funding Information: T32HP22240 HRSA NRSA for Primary Medical Care Research. National Institutes of Health UL1 RR024153 and UL1TR000005 Grant.
• Keywords: Qualitative research; Decision making; Sickle cell; Hydroxyurea
• Research Categories: Health Sciences, General; Health Sciences, Oncology

Abstract

BACKGROUND: Hydroxyurea (HU) is underutilized in children with sickle cell disease (SCD) because caregivers frequently decline HU when it is offered. This study explores what impacts this decision. RESULTS: Caregivers of children with clinically severe SCD whose children were offered HU previously were interviewed. We used a qualitative analytical approach to analyze their telephone interview transcripts. Caregivers who chose HU (n = 9) reported their children had severe SCD, sought detailed information about HU, and accepted HU as a preventative therapy. In contrast, caregivers who did not choose HU (n = 10) did not perceive their children as having severe SCD and did not question their child's provider about HU. CONCLUSIONS: This study identifies specific areas that providers should address to when they discuss HU with families so that they can make informed decisions. Our study also uncovered factors that are important to consider when designing future interventions to improve hydroxyurea acceptance and when developing decision-aid tools to assist caregivers of children with SCD who are considering disease modifying therapies.