Psychological and sexual outcomes in patients with bladder exstrophy and their caregivers

Bladder exstrophy is a rare congenital anomaly with long-term physical and psychosocial implications. While surgical management has improved, little is known about the psychological and sexual outcomes of affected individuals and their caregivers.

We retrospectively evaluated 27 patients (aged 12-33 years) who underwent bladder exstrophy closure and augmentation. Psychological and sexual well-being were assessed using validated psychometric tools, including the Arizona Sexual Experience Scale (ASES), Beck Depression Inventory (BDI), Maudsley Obsessive-Compulsive Inventory (MOCI), TEMPS Temperament Evaluation, State-Trait Anxiety Inventory (STAI), and the Zarit Caregiver Burden Interview. Ethical approval was obtained, and data were analyzed using standard statistical methods.

Depressive symptoms were common, with BDI scores averaging 12.6 (SD 11.7), and some patients showing severe depression. Anxiety levels were moderate (STAI-State: 37.1 ± 9.1; STAI-Trait: 41.2 ± 8.6). Sexual well-being varied, with ASES domains indicating reduced satisfaction but no significant correlation with age or gender. Caregivers reported a moderate to high burden (mean Zarit score: 36.4 ± 8.0). Significant correlations were found between depressive symptoms and both sexual dissatisfaction (ASES psychological arousal, rho = 0.625, p = 0.004) and trait anxiety (rho = 0.642, p = 0.003).

Patients with bladder exstrophy experience substantial psychological and sexual health challenges, while caregivers face a considerable burden. These findings highlight the need for holistic, long-term support that addresses both medical and psychosocial aspects in this population.