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Quality of life of adults with extrophy-epispadias complex

V. Wittmeyer, E. Aubry, A. Liard, P. Grise, P. Ravasse, J. Ricard, RH. Priso, J. Biserte, B. Herbaux, R. Besson

CHU Amiens, Caen, Lille, Rouen, France



Introduction: The extrophy-epispadias complex (EEC) is a rare congenital malformation requiring specialized long-term surveillance. The quality of life (QOL) is a preoccupation of the patients and of the patient’s parents.

Material and methods: We report a multicentre study on the QOL of 25 patients born with EEC between 1957 and 1990. The QOL was evaluated with the aid of the SF-36 questionnaire and a telephone questionnaire. Among these 25 patients, 15 underwent reconstructions and 10 had either a primary or a secondary derivation. The scores obtained by the patients were statistically inferior to the scores of the reference population for only 2 of the 8 dimensions evaluated by the SF-36: global perception of the state of health and limitation of physical activity due to the state of health. Results: There were significant differences in the QOL scores between patients according to dry-periods, urinary path and reconstruction/derivation. There were no significant differences according to sex, number of interventions, sexual life, and esthetic aspect. 9 patients were married and 2 lived together with their partners. 22 successfully graduated. 17 patients have full time jobs. 12 men and 6 women had sexual relations. 13 children were born from 10 patients (3 women and 7 men).

Conclusion: Only 2 dimensions of the SF-36 score were statistically inferior to the reference population. Patients are, in general, well integrated socially. The urinary derivations are often well tolerated and remain a therapeutic option when the incontinence is socially invalidating or has repercussions on the renal function.


Key words: extrophy-epispadias complex, quality of life