Sexual and Reproductive Health in Sickle Cell Disease: A Qualitative Analysis of Pediatric Hematologist Perspectives.

Abstract

Purpose: Significant progress in managing sickle cell disease (SCD) has led to improved mortality and a growing population of people living with SCD. Sexual and reproductive health (SRH) for individuals with SCD is a critical but under-addressed aspect of care. This study characterizes clinicians' current practices in SRH care for adolescents with SCD.

Methods: In a cross-sectional qualitative study, we recruited clinicians who care for adolescents with SCD from a national professional listserv. Participants completed in-depth semistructured qualitative interviews over video conference from May 2022 to May 2023. The study involved 20 SCD providers (14 female and 6 male). Interviews explored the clinician's role, perceived barriers and facilitators, and recommendations for SRH care for adolescents with SCD.

Results: Key concerns identified included managing vaso-occlusive events during menstruation, priapism, and contraceptive choice. Clinicians expressed different readiness for incorporating SRH care in their practice and identified barriers, such as training, time, and subspecialist availability. While all participants acknowledged the priority of SRH care for adolescents with SCD, clearly outlined guidelines are needed to enhance counseling and the provision of SRH care. Clinicians with specific expertise or familiarity with the patient are best suited to providing aspects of SRH care.

Discussion: This study emphasizes clinician interest in comprehensive SRH care for individuals with SCD. Well-defined guidelines are necessary to aid clinicians in addressing the unique SRH needs in SCD. Further study is needed to understand patient attitudes and establish evidence-based guidelines for SRH in SCD.