Health-related Quality of Life and Mental Health in Adolescents and Adults Operated for Bladder Exstrophy and Epispadias

ObjectiveTo evaluate health-related quality of life (HRQoL) and psychiatric symptom aspects in patients with bladder exstrophy and epispadias.MethodsSixty-two adolescents or adults operated for BEE were mailed questionnaires evaluating HRQoL (RAND-36 questionnaire) and psychiatric symptoms (SCL-90 questionnaire). Thirty-two patients with a median age of 28 years responded. The results were compared with national reference values.ResultsOverall, RAND-36 scores and SCL-90 scores were comparable in the patients and the referral population. However, 7 patients (21%) had high SCL-90 scores, suggesting mental health problems. The patients with unsatisfactory genital appearance, urinary incontinence, or bladder augmentation tended to have poorer HRQoL and psychiatric symptom scores.ConclusionMost adults with BEE have satisfactory HRQoL and mental health. However, a possible mental health problem can be found in one-fifth of the patients. Abnormal genitalia and bladder function may have a negative effect on HRQoL and mental health. Bladder augmentation is not associated with better outcome than mild incontinence.