Quality of life in female patients with bladder exstrophy-epispadias complex: Long-term follow-up.

Questionnaire studies on BEEC consistently report a high rate of patients not answering, 43% in the present study. The rarity of the disease determines a small sample size, which diminishes statistical power and could potentially conceal small differences with controls. Despite these limitations, the present findings are consistent with previous studies on BEEC with validated QoL questionnaires: adult women with BEEC suffer psychosocial impact mainly from incontinence, and also from gynecological complications, but their resilience and coping mechanisms allow them to achieve a quasi-normal QoL. Female patients with BEEC reported a normal QoL in five of eight items in the SF-36 questionnaire. Urinary incontinence was the main factor for the moderately decreased QoL according to specific questionnaires.