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.
Département de Chirurgie et Orthopédie de l'Enfant, Hôpital Jeanne de Flandre, Centre Hospitalier Régional Universitaire Lille, Lille Cedex, France. vwittmeyer@yahoo.fr
Viviane
V
Wittmeyer
Estelle
E
Aubry
Agnès
A
Liard-Zmuda
Philippe
P
Grise
Philippe
P
Ravasse
Jannick
J
Ricard
Jacques
J
Biserte
Rémi
R
Besson
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