Bladder exstrophy and epispadias complex (BEEC) is a rare and severe midline malformation affecting external genitalia, urethra and bladder neck in epispadias and in addition, urinary bladder, bony pelvis and abdominal wall in bladder exstrophy cases.
Despite of many operations and various operative techniques, urinary incontinence or inability to void spontaneously as well as unsatisfactory genitals remain as a major problem for patients with BEEC. These problems as well as parental attitudes may have impact on the quality of life and even for mental health.
Nearly all BEEC patients in our country have had their treatment in our hospital and we wanted to evaluate quality of life and mental health aspects of adult BEEC patients in our country by using validated questionnaires and compare the results with national reference population. Especially we wanted to evaluate if bladder augmentation and the need of clean intermittent catheterization (CIC) program produced better results than accepting that the patient is incontinent to a minor degree. Also we wanted to evaluate if the degree of satisfaction with external genitals had impact on the quality of life and mental health.
Sixty-two adolescents or adults operated for BEE were mailed questionnaires evaluating health related quality of life (HRQoL, RAND-36 questionnaire) and psychiatric symptoms (SCL-90 questionnaire). The RAND-36 questions evaluate eight dimensions of HRQoL: physical functioning, role limitations due to personal or emotional problems, vitality, mental health, social functioning, bodily pain, and general health. The SLC-90 is designed to measure the intensity of self-reported psychiatric symptoms: somatization, obsessive-compulsivity, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation, and psychoticism). The Global Severity Index (GSI) is the mean value of all of the 90 items. Thirty-three patients (53%) responded (median age 28 years). The median amount of general anesthesias was 15 (range 4 to 30) in the 26 patients, in whom exact numbers were available. The results were compared with national reference values.
Overall RAND-36 scores and SCL-90 scores were comparable in the patients and the referral population. However, seven patients (21%) had high SCL-90 scores suggesting mental health problems. The patients with unsatisfactory genital appearance, urinary incontinence or bladder augmentation as well as female patients and bladder exstrophy patients tended to have poorer HRQoL and psychiatric symptom scores.
Most adults operated for BEEC in childhood, 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 negative impact on HRQL and mental health. Bladder augmentation was not associated with better outcome than mild incontinence.
Taskinen S, Suominen JS, Mattila AK.
Department of Pediatric Surgery, Children's Hospital, University of Helsinki, Helsinki, Finland; Gender Identity Unit, Department of Adult Psychiatry, University Hospital of Tampere, Tampere, Finland.