title: Health related quality of life in patients with spina bifida: a prospective assessment before and after lower urinary tract reconstruction.
abstract: OBJECTIVE
  In a previous retrospective cohort study we challenged the assumption that lower urinary tract reconstruction improves health related quality of life in spina bifida cases. We readdressed this issue prospectively in a new series of patients.
  
  
  METHODS
  A total of 31 consecutive incontinent patients with spina bifida undergoing reconstruction with a continent stoma with or without augmentation, with or without bladder neck reconstruction and with or without cecostomy were assessed preoperatively and 6 months postoperatively with the Parkin disease specific health related quality of life score. The instrument stratifies patients by ages 12 years or younger and 13 years or older. An additional 4-item questionnaire was used to score bladder and bowel continence.
  
  
  RESULTS
  There was no significant change in health related quality of life following surgery in either age group. The median score changed from 167 to 174 in patients 12 years old or younger (p = 0.74) and from 199 to 193 in patients 13 years old or older (p = 0.42) despite a significant improvement in scores on all continence questions (p <0.05). In patients 12 years old or younger there was significant improvement in 3 items in the domains of independence and emotional expression (p <0.05). In adolescents 4 items changed significantly, and all were related to the independence and emotional domains (p <0.05).
  
  
  CONCLUSIONS
  Despite improvement in some question items we did not note an improvement in overall quality of life following reconstruction. Correcting only 1 system in a profound multisystem disability may be insufficient to improve health related quality of life or perhaps only caregiver quality of life is improved. The impact of lower urinary tract reconstruction on quality of life in patients with spina bifida requires further assessment before improvements are assumed.
authors.affiliation: Department of Pediatric Urology, University of British Columbia, Vancouver, British Columbia, Canada. amacneily@cw.bc.ca
authors.forename: A E
authors.initials: AE
authors.lastname: MacNeily
authors.forename: S
authors.initials: S
authors.lastname: Jafari
authors.forename: H
authors.initials: H
authors.lastname: Scott
authors.forename: A
authors.initials: A
authors.lastname: Dalgetty
authors.forename: K
authors.initials: K
authors.lastname: Afshar
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D008297:Male; D011446:Prospective Studies; D011788:Quality of Life; D016135:Spinal Dysraphism / Q000150:complications*; D011795:Surveys and Questionnaires; D014549:Urinary Incontinence / Q000209:etiology* / Q000601:surgery*; D013520:Urologic Surgical Procedures; D055815:Young Adult