Examining long-term outcomes of bladder exstrophy: a 20-year follow-up.
OBJECTIVE
To examine long-term quality-of-life, urinary continence and sexual function outcomes in patients diagnosed with bladder exstrophy (BE).


METHODS
A total of 65 patients with BE and follow-up of at least 20 years were identified. After informed consent for inclusion in the study, the patients were asked to complete three validated questionnaires, the Short-Form 36 quality-of-life questionnaire (SF-36), the International Consultation on Incontinence Questionnaire (ICIQ) and the International Index of Erectile Function (IIEF), to assess quality of life, perceived urinary continence and sexual function.


RESULTS
In all, 21 patients responded to the questionnaires, yielding a 32% response rate. High scores in each of the eight dimensions of the SF-36 reflected a positive perception of quality of life by respondents; calculated scores were compared with those of a normal control group. The only significant difference found between the groups was that the study population perceived their general health to be poorer than those in the control group. High scores on the ICIQ indicate high levels of subjective incontinence in patients, with scores ranging from 0 to 21. Reporting scores of 0 (continent), 12/21 patients perceived their continence to be normal, 9/21 patients had scores >2 (mild), with one patient scoring a 16, and 11 (severe incontinence), patients reported no identifiable leakage during normal activities. There was a 29% response rate for the IIEF (15 patients completed this). IIEF scores were broken down into five dimensions and mean scores were calculated. The mean scores showed mild to moderate dysfunction in each category, including overall satisfaction with sexual experience.


CONCLUSIONS
The patient-reported quality of life in patients with BE was normal in all dimensions, with the exception of perception of general health. Half of the patients reported normal continence and had no complaints of urinary leakage. Sexual function in males was significantly affected across all dimensions, with mild to moderate dysfunction.
Department of Urology, Johns Hopkins Medical Institutions, Baltimore, MD, USA.
Angela D
AD
Gupta
Sameer K
SK
Goel
Christopher R J
CR
Woodhouse
Dan
D
Wood
D000328:Adult; D001746:Bladder Exstrophy / Q000150:complications / Q000453:epidemiology / Q000523:psychology*; D003075:Coitus / Q000523:psychology*; D007172:Erectile Dysfunction / Q000453:epidemiology / Q000209:etiology / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D017060:Patient Satisfaction; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013997:Time Factors; D006113:United Kingdom / Q000453:epidemiology; D014554:Urination
adolescent; bladder exstrophy; continence; quality of life; sexual function