(687) Beyond Function: Sexual and Fertility Perspectives in Women with Spina Bifida Across the Transition to Adult Care

Abstract Introduction Women with spina bifida (SB) experience multifactorial challenges impacting sexual health and fertility-ranging from neurologic dysfunction to psychosocial and privacy barriers. Despite increasing survival into adulthood, counseling in these domains remains inconsistent. Objective To describe sexual activity, desire, and educational interest rates among women with SB in transitional care, and to explore how ambulation and reconstructive surgery influence sexual and reproductive behaviors. Methods A prospectively maintained database of 221 SB patients (2015–2022) was reviewed, and all 85 female patients were included. Demographics, ambulation status, reconstructive surgery history, and responses to non-standardized sexual and fertility questionnaires were analyzed descriptively. Reconstructive surgery was defined as any urinary or colorectal procedure involving bowel. Results Eighty-five women with SB were included (49% ambulatory, 40% non-ambulatory, 11% not reported). The average age was 25.7 years (range 14.8–43.2), and 60% had undergone reconstructive surgery. Overall, 76% of patients had no desire to learn about sexuality, 69% had no desire to be sexually active, 68% had never been sexually active, and 78% had no desire to learn about fertility. Ambulatory patients were more likely to desire sexual activity (p = 0.008). There were no differences in current or prior sexual activity, or in desire to learn about sexuality or fertility, based on ambulation or reconstructive surgery status. Patients with reconstructive surgery were more likely to use birth control (p = 0.036) but were not more likely to have seen a gynecologist compared to non-reconstructed patients. The most frequently cited factors influencing sexual activity were personal health problems (23%) and lack of privacy (11%). Conclusions Sexual health needs remain underrecognized in women with SB. Nearly one in five expressed desire for sexual activity and fertility education, underscoring an unmet need for proactive, tailored counseling. Ambulatory patients more often desired sexual activity, and reconstructed patients more frequently used contraception, suggesting that functional status and surgical history influence sexual behaviors and reproductive decision-making. Disclosure No