Quality of life in adults with bladder exstrophy-epispadias complex.
OBJECTIVE
We evaluated quality of life in adults with bladder exstrophy-epispadias complex to improve patient and parent counseling.


METHODS
We evaluated quality of life in a multicenter study using the SF-36® Medical Outcome Study questionnaire and a local questionnaire. A total of 47 patients born in 1957 to 1990 were followed due to bladder exstrophy-epispadias complex at the 4 participating hospitals.


RESULTS
Nine women and 16 men were included in analysis, including 15 who underwent staged reconstruction for bladder exstrophy-epispadias complex and 10 who underwent primary or secondary urinary diversion. Nine patients were married and 2 were in a long-term partnership. A total of 22 patients achieved a high school degree with examination success and 17 worked full time. Six women and 12 men achieved penetrative intercourse. A total of 13 children were born to 3 women and 7 men. Quality of life scores in our patients were less than the norm based scores on 2 of the 8 health concepts, including limitations in physical activity due to health problems and general health perception. Results were statistically different among patients depending on dryness, voiding and urinary reconstruction/diversion. Patient scores did not differ in regard to gender, number of interventions, sexual life, cosmesis or renal function.


CONCLUSIONS
Patient scores were less than norm based scores on only 2 health concepts and patients were generally well integrated into society. Urinary diversion was usually well tolerated. It remains a therapeutic option when incontinence interferes with social life or renal function is compromised.
Wittmeyer
Viviane
V
Département de Chirurgie et Orthopédie de l'Enfant, Hôpital Jeanne de Flandre, Centre Hospitalier Régional Universitaire Lille, Lille Cedex, France. vwittmeyer@yahoo.fr
Aubry
Estelle
E
Liard-Zmuda
Agnès
A
Grise
Philippe
P
Ravasse
Philippe
P
Ricard
Jannick
J
Biserte
Jacques
J
Besson
Rémi
R
D000015:Abnormalities, Multiple / Q000175:diagnosis; D000328:Adult; D001746:Bladder Exstrophy / Q000150:complications / Q000175:diagnosis; D004842:Epispadias / Q000150:complications / Q000175:diagnosis; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013997:Time Factors; D055815:Young Adult