Provider Attitudes, Preferences, and Practices Regarding Sexual and Reproductive Health for Adolescents and Young Adults with Sickle Cell Disease

Abstract

Purpose: With improvements in life expectancy, adolescents and young adults (AYAs) with sickle cell disease (SCD) increasingly face sexual and reproductive health (SRH) concerns. As subspecialists often serve as primary care providers for those with chronic disease, this study examines pediatric SCD providers' practices and attitudes related to SRH of AYA women with SCD.

Methods: We developed an adapted survey to identify SCD provider attitudes and practices in addressing menses, sexual activity, contraception, and pregnancy for their female patients. We electronically distributed this survey to the American Society of Pediatric Hematology/Oncology SCD interest group. We used descriptive statistics to analyze results.

Results: A total of 78 pediatric SCD providers completed the survey. A majority (95%) rated SRH discussions as moderately important or higher, with 89% agreeing this care should be standardized. Most respondents reported discussing SRH, such as menses (78%), teratogenic medications (61%), and contraception (90%), with their female patients with SCD at least annually. Although most refer AYAs with SCD for birth control (83%), 39% endorsed a preferred method, with 33% of these favoring levonorgestrel intrauterine devices in this population and 40% injectable contraception. Approximately half of respondents (57%) reported that the use of combined hormonal contraceptives was unacceptable despite published guidelines that support potential benefits outweighing theoretical risk in AYAs with SCD.

Conclusions: The range of SRH conversations and contraceptive recommendations for AYAs from pediatric SCD providers is broad. SCD providers and AYAs with SCD would benefit from improved evidence and educational resources related to contraception as well as coordinated SRH counseling.