Abstract

Sickle cell disease (SCD) is associated with hypercoagulability, but adults with SCD also have an increased incidence of bleeding including heavy menstrual bleeding (HMB). HMB is common among adolescent females, but the impact of HMB in pediatric SCD is unclear. The objectives of this study were to examine menstrual health status, knowledge, and quality of life (QOL). We performed a single-institutional multi-clinic cross-sectional study comprised of a five-part survey in pediatric participants with SCD. The survey included the validated Menstrual Bleeding Questionnaire (MBQ) and Self-administered Bleeding Assessment Tool (Self-BAT). Forty-eight participants with a median age of 16years (range: 12-21years) completed the study. The mean age at onset of menarche was 13±1.3years. On the MBQ, 29% reported heavy/very heavy menstrual flow, 61% reported moderate or severe dysmenorrhea, and 96% had menses lasting less than 1week. The Self-BAT revealed that 42% of participants reported a history of HMB. Participants with severe dysmenorrhea or HMB had higher MBQ scores, corresponding to worse QOL. Despite this, less than 20% of participants had attempted any hormonal therapy for menstrual regulation. The odds of hormonal therapy utilization were comparable among participants on hydroxyurea versus not on hydroxyurea (odds ratio 1.58, 95% confidence interval [CI]: 0.33-7.56). The prevalence of HMB and dysmenorrhea is high among adolescents and young women with SCD. Strategies that incorporate menstrual health assessment into routine medical care in this population would help address this important area of pediatric health.

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