OBJECTIVES: To assess the adequacy of sex education and to determine the incidence of various difficulties encountered in relationships and sexual contact by young adults who have spina bifida (SB) with and without hydrocephalus (HC) in the Netherlands.
DESIGN: Cross-sectional.
SETTING: Community.
PARTICIPANTS: Patients with SB occulta or aperta (N=157; 41% male; mean age, 20.8 y; age range, 16-25 y). Interventions Not applicable.
MAIN OUTCOME MEASURES: Structured interview on sex education, relationships, sexual activities, and sexual functioning.
RESULTS: Although sex education had been provided to almost all patients, fewer than a quarter received information specific to people with SB. Of all patients, 25% had a partner, 70% desired sexual contact, 47% had had sexual contact, and 22% had had sexual intercourse during the last year. Only 52% were satisfied with their present sex life. Incontinence and lack of self-confidence were important obstacles. Compared with patients without HC (HC-), patients with HC (HC+) less often had a partner, were sexually less active, and more often had problems with sexual functioning. Predictors of not having sexual contact were having HC and being male.
CONCLUSIONS: Relationships and sexuality are important for young adults with SB. HC+ patients are less active and perceive more problems than HC- patients. Counseling in relationships and sexuality should be part of the regular care for this group.