Ambulatory status and sexual function and activity in young adults with spina bifida

Young adults with spina bifida may experience altered genital sensation and sexual function. There are no validated questionnaires and few studies examining sexual function and activity in this population. Ambulatory status has previously been associated with better erectile function, but few studies report on other domains of sexual function in men and women.

To understand the sexual function and activity of young adults with spina bifida. We hypothesize that ambulatory status is associated with better sexual function and increased sexual activity in young adults with spina bifida.

From 2013 to 2024, young adults with spina bifida were surveyed using a non-validated sexual questionnaire assessing genital sensation, sexual function, and sexual activity. Ambulatory status was defined using the 5-point Hoffer classification; patients were dichotomized for analysis. Fisher's exact and chi square tests were used to compare responses between the groups.

Responses from 103 patients were analyzed. There were 31 ambulatory (19 lumbar, 3 lumbosacral, 9 sacral) and 30 nonambulatory (9 thoracic, 20 lumbar, 1 lumbosacral) men (median age of 20.0 years, range 18.0-26.0 years). 97 % of ambulatory men reported having some penile sensation compared to 74 % of nonambulatory men (p = 0.02). Sexually active nonambulatory men were more likely to report ejaculatory dysfunction (43 %, 6/14) than sexually active ambulatory men (5 %, 1/21; p = 0.01). There were 24 ambulatory (12 lumbar, 2 lumbosacral, 10 sacral) and 18 nonambulatory (3 thoracic, 15 lumbar) women, with a median age of 20.5 years (range 17.8-26.2 years). We found no significant association between ambulatory status and sexual function in women or in sexual activity rates for either sex.

In men, ambulatory status was associated with higher rates of reported penile sensation and ability to ejaculate. No differences in sexual function according to ambulatory status were identified in women. Strengths of the study include the relatively large sample size and inclusion of a variety of sexual domains. A limitation of the study was the use of the non-validated questionnaire, though none exists for this target population.

In young men with spina bifida, ambulatory status was associated with positive responses regarding penile sensation and ejaculation. However, ambulatory status was not associated with reporting better sexual function in young women with spina bifida. These results can be used to facilitate discussion about sexual health with young adults with spina bifida.