OBJECTIVE: Examine long term quality of life, urinary continence, and sexual function outcomes in patients with a diagnosis of bladder exstrophy (BE).
PATIENTS: 65 patients with BE and follow up for at least twenty years were identified.
METHODS: The patients were identified and mailed study protocol and consent for inclusion in the study, after ethical approval was obtained. Three validated questionnaires, SF-36 Quality of Life Questionnaire, International Consultation on Incontinence Modular Questionnaire (ICIQ), and International Index of Erectile Function (IIEF), were administered to assess quality of life, perceived urinary continence and sexual function.
RESULTS: 21 patients responded to the questionnaires yielding a 32% response rate. High scores in each of the 8 dimensions of the SF-36 reflected a positive perception on quality of life by respondents; calculated scores were compared to normal controls. The only dimension with a significant difference demonstrated is that the study population perceived their general health to be poorer than normal controls. High scores from the ICIQ indicate high levels of subjective incontinence in patients, scores range from 0-21. Reporting scores of 0 (continent), 57.8% of patients perceived their continence to be normal. 42% of patients had scores greater than 2 (mild), with one patient scoring a 16. 11 (severe incontinence), patients reported no identifiable leakage during normal activities. The received 15 (29% response rate) IIEF scores were broken down into five dimensions and averages calculated. The average scores of each dimension demonstrated mild to moderate dysfunction in each category, including overall satisfaction with sexual experience.
CONCLUSION: The quality of life per patient report is normal in all dimensions with an exception of perception of general health. Half of the patients perceived normal continence and had no complaints of urinary leakage. Sexual function in males is significantly affected across all dimensions, with mild to moderate dysfunction.
Written by:
Gupta AD, Goel SK, Woodhouse CR, Wood D. Are you the author?
Johns Hopkins Medical Institutions, Department of Urology, 600 N Wolfe Street, Marburg 134, Baltimore, MD 21287.
Reference: BJU Int. 2013 Jul 25. Epub ahead of print.
doi: 10.1111/bju.12389
PubMed Abstract
PMID: 24053354
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