Disease‐modifying therapies for sickle cell disease: Decisional needs and supports among adolescents and young adults

Abstract Background Shared decision‐making is one promising solution to addressing barriers in use of disease‐modifying therapies for adolescents and young adults (AYAs) with sickle cell disease (SCD). A thorough understanding of decisional needs can guide the development of decisional supports and promote shared decision‐making. Procedure Informed by the Ottawa Decision Support Framework (ODSF), we conducted a qualitative analysis to assess decisional needs and supports reported by AYAs with SCD, their caregivers, and healthcare providers. Semi‐structured qualitative interviews were conducted with AYAs and their caregivers, and online crowdsourcing was used with SCD providers. Thematic and descriptive content analyses were used to summarize perspectives on decisional needs and supports regarding disease‐modifying therapies. Results Fourteen AYAs ( M age = 21 years, 57% male, 93% non‐Hispanic Black, 79% HbSS), 11 caregivers (80% female, 100% non‐Hispanic Black), and 40 healthcare providers (65% female, 65% non‐Hispanic White, M years in practice = 14.8 years, 75% physicians) participated. Thematic analysis revealed needs related to: decisional conflict, inadequate knowledge, unclear expectations, and inadequate supports and resources. Six forms of support emerged as important for decision‐making: establishing an open and trusting patient/family–provider relationship, providing information, accepting ambivalence and unreadiness, supporting implementation of a decision, addressing inadequate health and social services, and promoting adequate social, emotional, and instrumental help. Conclusions This is the first study to assess decisional needs and supports for AYAs with SCD considering disease‐modifying therapies. Additional research is needed to examine which decision supports are the most impactful to promote effective shared decision‐making in this population.