Fertility and family-building in sickle cell disease: A qualitative analysis of hematologist perspectives

As survival for people with sickle cell disease (SCD) improves, fertility and family-building have become increasing priorities. This shift is especially important with the broader use of disease-modifying treatments that impact fertility. This qualitative study assessed pediatric hematologists' perspectives and practices regarding adolescents with SCD who may have fertility and family-building concerns. We interviewed 20 hematology providers about their roles, perceived barriers and facilitators, and recommendations for reproductive healthcare for adolescents with SCD. Ten participants (n = 5 men; n = 5 women; n = 5 within 5 years post-fellowship) specifically discussed fertility and family-building. We transcribed the interviews and coded them using applied thematic analysis. Three major themes emerged: the impact of disease-modifying, curative, and transformative therapies; patient-level factors that influence the timing and scope of fertility discussions; and the importance of multidisciplinary collaboration. Participants described uncertainty about the evidence surrounding fertility risks of treatments and the need to balance these with health benefits, patient age, and their care journey. Conversations about fertility and family-building in SCD are nuanced and benefit from multidisciplinary expertise. Future work should create standardized, age-based counseling and train clinic teams to address fertility concerns among adolescents with SCD.