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

Introduction Bladder exstrophy-epispadias complex (BEEC) is a congenital malformation that requires multiple surgeries during childhood and life-long follow-up. It often presents with conditions that have the potential to impact quality-of-life (QoL) and psychosocial functioning of affected patients, such as incontinence and sexual dysfunction. The aim of this study is to examine the QoL, urinary continence, sexual function, and overall health in a long-term series of female patients with BEEC. Method A retrospective review was performed of female patients with BEEC born between 1964 and 1996. Thirty-three patients were asked to complete four validated questionnaires to evaluate their QoL regarding urinary continence and sexual activity (ICIQ, Potenziani-14, and PISQ-12 questionnaires). Nineteen patients completed and returned the questionnaires. The overall QoL was assessed with the SF-36 questionnaire, and demographics were evaluated. Statistical analysis was performed to compare the general QoL with that of the general population. Results The median age of the patients was 26 years (range 18e50) (Table). A low to moderate impact of urinary incontinence on QoL was reported by 30% of patients in the ICIQ. Also as a result of urinary incontinence, 84% of patients reported a moderate to severe impact on their sexual lives. Twelve patients got married with eight gestations and five births. SF-36 reported general QoL comparable with that of the general population in five out of eight items. Differences were seen in the mental health, emotional role, and physical functioning items (p < 0.001). The main factors for the differences were poor body image, anxiety, and urinary incontinence. A satisfactory social life was reported by 70% of patients. Conclusion 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.