Concerns Regarding Gynecological Aspects of Brazilian Girls and Women With Down Syndrome: A Cross-Sectional Study of Caregivers’ Opinions

Abstract

PURPOSE Girls and women with Down syndrome (DS) and their caregivers may have more difficulties in dealing with puberty, menstruation, and sexuality than those without DS. Our aim was to understand the concerns of these caregivers about gynecological aspects, including menstruation, contraception, and sexual practice. METHODS We performed a cross-sectional study that included caregivers of females with DS aged 9 years or older and both in pre-and post-menarche. The caregivers answered a questionnaire about their concerns regarding puberty, menstruation, sexuality, and contraception methods. RESULTS We enrolled 100 caregivers of females with DS. Caregivers’ major concern was menstrual bleeding. Most caregivers (57%) would not prohibit romantic relationships, including sexual relationships. Of the care recipients, 78 had reached menarche and their most common complaints were pain and behavioral changes. Regarding sexual behavior, 2% had already had sexual intercourse. Contraception was used by 14 of the 78 (17.9%) post-menarche females with weight gain as the most common side effect (43%). CONCLUSIONS In our sample, females with DS had sexual development comparable to those without the syndrome. As these females become increasingly independent, it is necessary to guide caregivers and primary care physicians, especially gynecologists, about the difficulties related to the menstrual period.