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April 3, 2026Pediatric Blood & Cancer0 citations

Clinical Practice Patterns for Discussing Hydroxyurea Initiation With Families of Children With Sickle Cell Disease

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AHAimee K. HildenbrandALAmy LangAHAnna Hood

Key Points

  • The research aims to assess how hematology providers introduce hydroxyurea to families of children with sickle cell disease.
  • Analyzed process maps from 11 pediatric SCD clinics in the U.S. to summarize practices.
  • Conducted semi-structured interviews with nine healthcare providers from one clinic.
  • Employed thematic and descriptive content analysis to understand provider experiences.
  • Common steps identified included checking in, discussing hydroxyurea, providing materials, and follow-up.
  • Providers emphasized introducing hydroxyurea shortly after diagnosis and encouraged it for complicated cases.
  • Educational approaches used included in-person discussions, written materials, and online resources focusing on benefits and side effects.

Abstract

ABSTRACT Background Despite robust evidence of safety and efficacy, hydroxyurea (HU) uptake remains low for children with sickle cell disease (SCD). Guidelines recommend use of shared decision‐making for HU initiation, but limited resources exist to inform these conversations with families. This study examined practices among hematology providers when introducing HU to families of children with SCD. Procedure In Study 1, 11 pediatric SCD clinics within the United States completed process maps delineating their practice for discussing HU initiation with families. Process maps were compared to summarize processes. In Study 2, individual semi‐structured interviews were conducted with nine healthcare providers from one clinic from Study 1. Thematic and descriptive content analysis were used to summarize provider perspectives on existing processes. Results Process maps highlighted the following common steps: (1) check in for appointment and obtain laboratory studies ( n = 8); (2) medical provider discusses HU with family ( n = 11); (3) family given HU materials ( n = 8); and, (4) follow‐up HU discussion at next visit ( n = 6). Process variations were also identified. In Study 2, providers universally reported introducing HU shortly after diagnosis and strongly encouraging it for patients with disease complications. HU education was provided primarily via in‐person conversation, written materials, and websites, focusing on its expected benefits, historical context, and side effects. Conclusions We identified both similarities and variations in clinical practice for HU initiation in children with SCD. Results highlight potential opportunities to improve the ways in which HU initiation is discussed with families of children with SCD.

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Cite This Study

Hildenbrand et al. (2026) studied this question.

synapsesocial.com/papers/69cf5e745a333a821460cd69https://doi.org/10.1002/1545-5017.70292
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