title: Short and long-term quality of life after reconstruction of bladder exstrophy in infancy: preliminary results of the QUALEX (QUAlity of Life of bladder EXstrophy) study.
abstract: OBJECTIVE
  The aim of the study was to assess quality of life (QOL) of patients born with bladder exstrophy (BE) and reconstructed during early childhood in 7 French university hospitals (QUALEX study: QUAlity of Life of bladder EXstrophy).
  
  
  METHODS
  Patients from 6 to 42 years old answered self-administered Short-Form 36 (SF-36), VSP-A (Vécu et Santé Perçue de l'Adolescent), VSP-AE (Vécu et Santé Perçue de l'Enfant), AUQUIE (AUto-QUestionnaire Imagé de l'Enfant), and general questionnaires about functional and socioeconomic data. Dimension scores were compared between adults and adolescents using SF-36 and adolescents and children using VSP-AE. Scores were also compared to the general French population.
  
  
  RESULTS
  Among the 134 eligible patients, 36 adults, 18 adolescents, and 17 children answered the questionnaire. There was no difference between responders and nonresponders in reconstruction criteria. Continence was achieved in 77% of adults, 65% of adolescents, and 12% of children. Adolescent QOL was globally superior to adults and children. Adult QOL was globally lower than the general population except on the physical dimension. Children's QOL was also globally lower than the general population except for relations with family and school work. Adolescents' scores on SF-36 were superior to the general population but lower on half of the dimensions with VSP-AE.
  
  
  CONCLUSIONS
  Patients presenting with reconstructed BE have impaired QOL, and functional results seem to be the most likely predictive factor of health-related QOL score.
authors: Saint-Jacques University Hospital, 2, Place Saint Jacques, 25030 Besançon Cedex, France.
authors: Sandy
authors: S
authors: Jochault-Ritz
authors: Mariette
authors: M
authors: Mercier
authors: Didier
authors: D
authors: Aubert
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D001746:Bladder Exstrophy / Q000523:psychology / Q000601:surgery*; D002648:Child; D004522:Educational Status; D004842:Epispadias / Q000523:psychology / Q000601:surgery; D005191:Family Characteristics; D005260:Female; D006304:Health Status; D006801:Humans; D007223:Infant; D008137:Longitudinal Studies; D008297:Male; D010290:Parents; D011788:Quality of Life; D019651:Plastic Surgery Procedures / Q000379:methods*; D011795:Surveys and Questionnaires; D013520:Urologic Surgical Procedures / Q000379:methods