The prognosis of patients with spina bifida (SB) has improved owing to advances in medical and surgical treatments, including the management of tethered SB syndrome, bladder and bowel management, and management of spinal and lower limb deformities.
As life prognosis improves, emphasis is being placed on quality of life (QOL), and lower urinary tract and sexual function are major concerns for patients (1,2). In this study, we evaluated the current status of lower urinary tract and sexual function in adult patients with SB compared to healthy adult volunteers.

This was a prospective, observational study. The participants were adults with SB who visited Nara Medical University Hospital and Osaka Red Cross Hospital, Otemae Seishi Gakuen, between September 2023 and December 2024. Age, height, weight, type of SB, comorbidities, medications, urinary management methods, International prostate symptom score (IPSS), Overactive bladder symptom score (OABSS), International consultation on incontinence-questionnaire: short form (ICIQ-SF), King Health Questionnaire, Female sexual function index (FSFI), Sexual health inventory for men (SHIM), Erection hardness score (EHS), and Aging males’ symptoms (AMS) were assessed. We posted a poster for the study on a university bulletin board and recruited healthy volunteers.

A total of 21 females had SB, a median age of 40 years, 16 had myelomeningocele, and 5 had spinal lipoma. All the patients underwent self-catheterization. The control group comprised 17 females with a median age of 40 years. Total IPSS, QOL, OABSS, and ICIQ-SF scores were significantly higher in the SB group than in the control group. The SB group scored higher on the King Health Questionnaire than the control group for all items except for general health perception. The arousal, lubrication, orgasm, satisfaction, pain, and total FSFI scores were significantly lower in the SB group than in the control group (Fig.1).
Nine males had SB (median age 41 years), seven had myelomeningocele, and two had spinal lipoma. All the patients underwent self-catheterization. The control group consisted of 11 males, with a median age of 34 years. Total IPSS, QOL, OABSS, and ICIQ-SF scores were significantly higher in the SB group than in the control group. In the King Health Questionnaire, the SB group scored higher than the control group for all items. The total SHIM and EHS scores were significantly lower in the SB group than in the control group. No significant differences were observed in the AMS between the SB and control groups (Fig.2).

The FSFI scores of adult females with SB were significantly lower than those of healthy volunteers in terms of arousal, lubrication, orgasm, satisfaction, and pain; however, there was no difference between the two groups in terms of sexual desire. This suggests that sexual desire exists regardless of whether or not one has sexual dysfunction. This suggests that satisfaction may change depending on the presence of a partner in both patients with SB and healthy volunteers (Fig.3).
All nine males with SB had moderate to severe erectile dysfunction. All patients who reported having attempted sexual intercourse had partners, but their sexual satisfaction was low. A positive correlation was observed between the SHIM and EHS scores.
Patients whose QOL was reduced owing to urinary issues were observed, even if their symptoms were relatively stable. Improving QOL by considering medication or changes in medication for urgent urinary incontinence and pelvic floor muscle training or surgical treatment for stress urinary incontinence is important.

Patients with SB had lower urinary tract and sexual dysfunctions, but their sexual desire was preserved. A correlation was observed between QOL and ICIQ-SF scores, and the patients had problems with urinary incontinence.

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