Health-related quality of life in Brazilian adults with bladder exstrophy-epispadias complex: a cross-sectional study...

The bladder exstrophy-epispadias complex (BEEC) is a rare spectrum of congenital genitourinary malformations with potential negative impacts on health-related quality of life (HRQoL). This study aimed to describe HRQoL in adults with BEEC, evaluate its association with urinary continence, sexual function, and genital appearance satisfaction, and compare outcomes with normative Brazilian population data.

A cross-sectional study was conducted at a public tertiary paediatric centre. Participants included individuals diagnosed and treated with BEEC, aged ≥18 years, followed between 1987 and 2003. Data were collected between May 2022 and September 2024 via in-person or online questionnaires. Validated instruments were used: SF-36 (HRQoL), ICIQ-SF (urinary continence), IIEF-5 (male erectile function), FSFI-6 (female sexual function), a genital satisfaction scale, and self-reported psychological follow-up.

Of 123 eligible patients, 56 participated (34 men, 22 women; mean age: 26.3 years). Compared to the general population, participants had significantly lower scores in General Health, Vitality, Social Functioning, Role-Emotional, and Mental Health, particularly among younger men. Only 27 (48.2 %) participants were continent or had mild incontinence. Erectile dysfunction was reported by 9 (42.9 %) men and sexual dysfunction by 5 (35.7 %) women. Genital satisfaction was low, especially among men with erectile dysfunction. Only 18 (32.1 %) reported receiving psychological follow-up.

This study revealed significant HRQoL impairments, particularly in emotional, social, and general health domains. Urinary incontinence, sexual dysfunction, and dissatisfaction with genital appearance were strongly related to impaired HRQoL. An association was observed between sexual function, self-perception, and emotional well-being. Cross-cultural differences observed in the literature suggest that sociocultural context may influence HRQoL outcomes in individuals with BEEC.

These findings support the need for a multidisciplinary and continuous model of care, including psychological support, sexual counselling, and structured transition from paediatric to adult services.