Clinical Perspectives Regarding Sexual and Reproductive Health for Adolescents and Young Adults with Sickle Cell Disease

Abstract

Background: Sickle cell disease (SCD) is a genetic hematologic condition affecting more than 300,000 individuals worldwide. In the past decade, advances in therapy and management have enabled adolescents and young adults (AYA) with SCD to live longer. However, this population has increased morbidity and mortality as they reach adulthood and their reproductive years. Clinicians who care for individuals with SCD face challenges in advising patients about their sexual and reproductive health (SRH), and there are no standard guidelines for clinicians on SRH interventions or counseling. This study aims to characterize clinicians’ current attitudes, practices, and barriers/facilitators to providing SRH care for AYA with SCD. Methods: We recruited clinicians that care for AYA with SCD from a national sample of members of the American Society of Pediatric Hematology and Oncology (ASPHO) in a cross-sectional qualitative study. Participants completed in-depth semi-structured qualitative interviews. Interviews collected background information about the clinician and the nature of services offered for AYA with SCD at their health care center. Interviews also probed themes such as clinician role in providing SRH care, perceived barriers to providing SRH care, facilitators to providing SRH care, and clinician recommendations for ideal SRH care for AYA with SCD. We transcribed and systematically coded interviews to identify themes related to SRH care for AYA with SCD. Results: Thus far, we have interviewed 12 clinicians (75% female; 17% fellows). All participants stated that SRH discussions are important for AYA with SCD and agreed that SRH counseling should be a part of the standard of care. Key SRH topics for SCD patients included managing vaso-occlusive events including pain crises during menstruation, planning for pregnancy, contraceptive choice, and genetic counseling. However, many participants identified barriers to providing ideal SRH care, such as, training limitations, time constraints, staff availability and patient or family receptiveness to SRH discussions. Some clinicians identified other care providers that may be better suited to providing SRH care to AYA with SCD due to their expertise or familiarity with the patient. For example, pediatric hematologists feel comfortable with SRH counseling, but defer to primary care physicians for prescribing hormonal contraception. Conclusion: Clinicians that care for AYA with SCD agree that comprehensive SRH care is essential for their patients and would benefit from clearly outlined guidelines for counseling and provision of SRH care. Healthcare providers who treat individuals with SCD should be aware of the unique SRH needs of this population. Further study is needed to identify patient attitudes regarding SRH care needs.