Abstract
BackgroundHydroxyurea (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.ResultsCaregivers 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.ConclusionsThis 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.
Highlights
Script: Thank you for agreeing to speak with me today about having a child with sickle cell disease
Clinical trials show that HU decreases vaso-occlusive pain (VOC), acute chest syndromes (ACS), hospitalizations, and transfusions in both pediatric and adult patients [4, 5], and current guidelines are to offer HU therapy to all pediatric patients with Hemoglobin SS and Sβ0 sickle cell disease (SCD) to reduce and prevent SCD complications [6]
We suggest that the first step is to formally assess caregivers’ health literacy since this is associated with health outcomes [13, 14] and to assess caregivers’ SCD knowledge, potentially using the validated Sickle Cell Knowledge Questionnaire [15]
Summary
Script: Thank you for agreeing to speak with me today about having a child with sickle cell disease. Please know that there are no right or wrong answers to these questions, I am only interested in your opinions. If you have any questions, please let me know. If you have questions regarding sickle cell disease or hydroxyurea, I will try and answer these at the end of the interview. Do you have any questions before we begin the interview? Hydroxyurea (HU) is underutilized in children with sickle cell disease (SCD) because caregivers frequently decline HU when it is offered. In this study we aim to explore what impacts caregivers’ decision to choose HU or not choose HU therapy for their children with SCD
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