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.
Key Findings
Results
Pediatric hematologists identified managing vaso-occlusive events during menstruation, priapism, and contraceptive choice as key SRH concerns for adolescents with SCD.
These concerns emerged as the most prominent clinical SRH issues across interviews
Menstruation-related vaso-occlusive events and priapism represent SCD-specific complications that intersect with sexual and reproductive health
Contraceptive choice was identified as a distinct area of concern, presumably due to interactions between hormonal contraceptives and SCD pathophysiology
Results
Clinicians expressed varying degrees of readiness for incorporating SRH care into their hematology practice.
The study involved 20 SCD providers (14 female and 6 male) recruited from a national professional listserv
Interviews were conducted via video conference from May 2022 to May 2023 using a semistructured qualitative format
Variability in readiness suggests that not all hematologists feel equally equipped or willing to address SRH topics
Results
Clinicians identified multiple barriers to providing SRH care to adolescents with SCD, including training, time, and subspecialist availability.
Training was identified as a barrier, suggesting many hematologists may not receive adequate preparation in SRH topics
Time constraints within clinical visits were cited as a limiting factor
Limited availability of relevant subspecialists (e.g., gynecology, urology) was identified as an additional barrier
These barriers were identified despite all participants acknowledging SRH care as a priority
Results
All 20 clinician participants acknowledged SRH care as a priority for adolescents with SCD, but noted the absence of clearly outlined guidelines.
Universal acknowledgment of SRH priority was found across all 20 participants
Participants indicated that well-defined guidelines are necessary to aid clinicians in addressing the unique SRH needs in SCD
The lack of evidence-based guidelines was identified as a gap hindering consistent care delivery
Results
Clinicians indicated that providers with specific expertise or familiarity with the patient are best suited to delivering aspects of SRH care.
This finding suggests a preference for individualized or relationship-based care models rather than a one-size-fits-all approach
Specific expertise (e.g., in gynecology or adolescent medicine) and established patient relationships were both cited as facilitating factors
This reflects a shared-care or team-based approach to SRH in the context of SCD management
Methods
The study used a cross-sectional qualitative design with in-depth semistructured interviews conducted via video conference with SCD clinicians recruited from a national professional listserv.
Sample size was 20 SCD providers (14 female, 6 male)
Recruitment occurred through a national professional listserv targeting clinicians who care for adolescents with SCD
Interviews were conducted from May 2022 to May 2023
Interviews explored the clinician's role, perceived barriers and facilitators, and recommendations for SRH care
What This Means
This research examined how doctors who specialize in treating sickle cell disease (SCD) currently approach sexual and reproductive health (SRH) topics with their adolescent patients. Researchers interviewed 20 pediatric hematologists across the United States, asking them about their practices, challenges, and recommendations. The study found that while all the doctors recognized SRH as an important part of caring for teens with SCD, there is wide variation in how prepared and willing individual clinicians feel to address these topics.
The doctors highlighted several health concerns specific to SCD that overlap with sexual and reproductive health, including painful episodes triggered by menstruation, a condition called priapism (prolonged, painful erections in males), and questions about which contraceptive methods are safe for people with SCD. Barriers to providing this care included a lack of training in SRH topics, not enough time during appointments, and difficulty accessing relevant specialists like gynecologists or urologists. Doctors who had developed specific expertise or strong relationships with their patients were seen as the most capable of addressing these needs.
This research suggests that there is genuine interest and concern among SCD specialists about addressing sexual and reproductive health, but the field currently lacks the evidence-based guidelines needed to support consistent, high-quality care. The authors call for the development of clear clinical guidelines and further research into patients' own perspectives and needs, which could ultimately help improve care for the growing number of people living with sickle cell disease into adolescence and adulthood.
Oberoi A, Clarke A, Jacob S, Kazmerski T, Fassel H, Askew M, et al.. (2025). Sexual and Reproductive Health in Sickle Cell Disease: A Qualitative Analysis of Pediatric Hematologist Perspectives.. The Journal of adolescent health : official publication of the Society for Adolescent Medicine. https://doi.org/10.1016/j.jadohealth.2025.03.008