title: Development and validation of a spina bifida-specific pediatric quality of life questionnaire: the Spina Bifida Pediatric Questionnaire, SBPQ.
abstract: OBJECTIVE
  Based on existing questionnaires and patient interview, a health-related quality of life (HRQoL) questionnaire in spina bifida (SB) children is created and validated, the Spina Bifida Pediatric Questionnaire (SBPQ).
  
  
  METHODS
  SB patients from the SB reference centre Ghent University Hospital, Belgium, with mental ability between 6 and 18 years old and their parents were asked to participate in the study, together with a control group.
  
  
  RESULTS
  Thirty-nine patients and parents answered the questionnaire once, 20 patients and their parents the test-retest. Thirty-five controls answered the questionnaire once, 34 controls and their parents the test-retest. The final questionnaire was retained when 3 consecutive patients approved all items. Visual clues were added for children with a mental ability below 10 years of age. The test-retest showed a good to excellent agreement for child self-report in 5 domains (not for social functioning), for parent proxy report in all domains (6), for control self-report in 4 domains (not for domain home) and for control parent proxy report in all domains (5). Internal consistency reliability was good in child self-report and in parent proxy report, except for physical functioning in child self-report. There was parent-child agreement for 4 out of 6 domains. Regarding social and emotional functioning, QoL was rated lower by parents than by children themselves.
  
  
  CONCLUSIONS
  A SB HRQoL questionnaire was developed and validated. Because of visual aid, this questionnaire can be used by both young children and adolescents.
authors.affiliation: Department of Paediatric Gastroenterology, Ghent University Hospital, De Pintelaan 185, 9000, Ghent, Belgium. saskia.vandevelde@ugent.be.
authors.forename: Saskia
authors.initials: S
authors.lastname: Vande Velde
authors.affiliation: Department of Paediatric Psychology, Ghent University Belgium, Ghent, Belgium.
authors.forename: Jolien
authors.initials: J
authors.lastname: Laridaen
authors.affiliation: Department of Paediatric Psychology, Ghent University Belgium, Ghent, Belgium.
authors.forename: Eline
authors.initials: E
authors.lastname: Van Hoecke
authors.affiliation: Department of Paediatric Gastroenterology, Ghent University Hospital, De Pintelaan 185, 9000, Ghent, Belgium.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Van Biervliet
authors.affiliation: Department of Paediatric Gastroenterology, Ghent University Hospital, De Pintelaan 185, 9000, Ghent, Belgium.
authors.forename: Ruth
authors.initials: R
authors.lastname: De Bruyne
authors.affiliation: Department of Paediatric Gastroenterology, Ghent University Hospital, De Pintelaan 185, 9000, Ghent, Belgium.
authors.forename: Myriam
authors.initials: M
authors.lastname: Van Winckel
authors.affiliation: Department of Psychology, Ghent University Belgium, Ghent, Belgium.
authors.forename: Liesbet
authors.initials: L
authors.lastname: Goubert
mesh_terms: D000293:Adolescent; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D016135:Spinal Dysraphism / Q000523:psychology*; D018709:Statistics, Nonparametric; D011795:Surveys and Questionnaires
keywords: Child; Quality of life; Spina bifida; Young adult