Provider Views on Sexual and Reproductive Health for Adolescent and
Young Adult Women with Sickle Cell Disease
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.