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

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.

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.

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.

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.