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Provider Views on Sexual and Reproductive Health for Adolescent and Young Adult Women with Sickle Cell Disease
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  • Maayan Leroy-Melamed,
  • Seethal Jacob,
  • Marcia Shew,
  • Tracy Kazmerski
Maayan Leroy-Melamed
Indiana University School of Medicine
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Seethal Jacob
Indiana University School of Medicine
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Marcia Shew
Indiana University School of Medicine
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Tracy Kazmerski
Children's Hospital of Pittsburgh of UPMC
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Abstract

Background/Objectives With dramatic improvements in life expectancy, adolescents and young adults (AYA) with sickle cell disease (SCD) increasingly face sexual and reproductive health (SRH) concerns. Despite the high risk of maternal-fetal morbidity and mortality, over half of women with SCD experience pregnancy by age 21, indicating a gap in SRH care. This study examined SCD providers’ practices and attitudes related to SRH, particularly with regards to contraception. Design/Methods We distributed an adapted web-based survey to a national sample of SCD providers to identify their attitudes and practices in addressing SRH with their female patients. We analyzed results using descriptive statistics, independent sample t-tests, Chi-squared and Fishers exact tests. Results Ninety-two SCD providers completed the survey (84% pediatric and 13% adult providers). All respondents rated SRH discussions as moderately important or higher, with the majority (85%) agreeing this care should be standardized. Most respondents (76%) reported discussion of SRH, such as menses, pregnancy, and contraception, with their female patients with SCD at least annually. Although most providers refer SCD patients for birth control (87%), 37% favored the use of hormonal intrauterine devices in this population and 37% the use of injectable contraception among respondents who endorsed a preferred method. Approximately half of respondents (52%) felt the use of combined hormonal contraceptives (CHC) was unacceptable. Conclusion SCD providers consider SRH important for their female patients and largely believe these conversations should be standardized in their clinics. However, the range of conversations and contraceptive recommendations from SCD providers is broad, suggesting that this care can be improved.