[Subjective developmental outcome in bladder exstrophy and epispadias. A pilot study].

Area of Science:

• Urology
• Developmental Pediatrics
• Psychology

Background:

• Bladder exstrophy-epispadias complex (BEEC) is a severe congenital malformation impacting the urinary tract and genitalia.
• Comprehensive understanding of long-term functional and psychosocial outcomes in BEEC patients is crucial for effective management.

Purpose of the Study:

• To evaluate the functional and psychosocial developmental outcomes in patients with bladder exstrophy-epispadias complex (BEEC).
• To assess continence rates, neurocognitive development, educational achievements, and psychosocial adaptation in different age groups.

Main Methods:

• A semi-standardized questionnaire was administered to 122 patients from German-speaking support groups.
• Data collected included surgical history, continence status, developmental milestones, education, life satisfaction, and partnership experiences.

Main Results:

• Patients underwent a mean of 1 to 7 surgeries depending on age group.
• Continence rates improved with age, reaching 80% in patients over 20.
• Neurocognitive development was normal, with most patients excelling academically and professionally.
• Psychological anxieties were noted concerning sexuality and partnerships.

Conclusions:

• BEEC patients demonstrate remarkable resilience, achieving good functional and educational outcomes.
• Psychosocial challenges, particularly in intimacy and relationships, require further investigation and targeted support.
• Future research should focus on the interplay between urological status, functional impairments, and psychosocial adaptation to enhance comprehensive care strategies.