Evaluating Menstruation Patterns and Contraceptive Use in Adolescents and Young Adult Women With Sickle Cell Disease

This study aimed to examine reproductive health and the experience of adolescents and young adult females with sickle cell disease (SCD). We investigated reproductive health experiences of adolescents and young adults aged 13-21 with SCD, examining menstruation's impact, sexual activity patterns, contraceptive use, and counseling received at Children's National Hospital.

A cross-sectional quality improvement project surveyed 75 females with SCD (ages 13-21) presenting to routine hematology visits from April to December 2024. We administered a 20-question survey that included sexual activity, pubertal, menstrual, and contraceptive history.

The median age of thelarche and menarche was 12 years; 12% of participants reported heavy periods or bleeding for >7 days. Seventy-five percent used hydroxyurea therapy. Twenty-three participants (31%) were sexually active, with 100% using contraception; 34.78% hormonal and 65.2% non-hormonal types. Only 25% received contraceptive counseling, significantly associated with older age (p = .01). Participants >18 years old reported significantly more pain crises related to menses (46.15%) than those 13-18 years (8.33%), p < .001; no significant difference in catamenial pain crises between those on hormonal vs. non-hormonal contraception 57.1% vs. 33.33% respectively (p = .38).

This study revealed significant age-related patterns in menstruation-associated pain crises and contraceptive counseling among SCD adolescents and young adults. Despite high contraceptive use among sexually active participants, overall contraceptive counseling rates remain low. The high prevalence of disease-modifying therapies such as hydroxyurea may influence pubertal timing compared to historical data, suggesting evolving reproductive health patterns in contemporary SCD management.