title: Quality of life and satisfaction after multilevel surgery in cerebral palsy: confronting the experience of children and their parents.
abstract: OBJECTIVE
  If the benefits of single-event multilevel surgery (SEMS) in ambulatory children with cerebral palsy have already been validated, especially in terms of functional outcomes, fewer studies have evaluated SEMS in terms of quality of life and satisfaction with surgical outcomes, especially pertaining to the opinions of children and their family. The objectives of this study were to confront the perceptions of parents and the experience of their operated children in terms of quality of life and surgical outcomes.
  
  
  METHODS
  This was an observational, descriptive, single-center study conducted in a regional Pediatric Physical Medicine and Rehabilitation (PM&R) center, which is considered a reference center in this region of France. The subjects recruited were ambulatory children with cerebral palsy (CP) who had SEMS between 2009 and 2011, and one of their parents. The specific "child" and "parent" CP-related modules of the DISABKIDS questionnaire were used to assess these children's quality of life post-surgery. Perceptions of parents and children regarding gait evolution and satisfaction with surgical outcomes were analyzed via a questionnaire developed by the author. Regarding quality of life and surgical outcomes, the correlation between the perception of parents and experience of children was estimated using the intraclass correlation coefficient (ICC) or prevalence-adjusted bias-adjusted kappa values (PABAK).
  
  
  RESULTS
  Twelve children (83% of them boys) and their parents participated in the study. For the DISABKIDS questionnaire, a moderate correlation was found regarding functional impact (ICC=0.58; P<0.0178) but a high correlation was reported for the communication item of the questionnaire (ICC=0.73; P=0.0025). Regarding satisfaction with surgical outcomes, results showed a good correlation (PABAK=0.64).
  
  
  CONCLUSIONS
  Concerning quality of life and satisfaction with surgical outcomes, our study showed a good or even high correlation between parents' perceptions and their child's experience. It is however essential to privilege the child's opinion whenever possible.
authors.affiliation: Service de médecine physique et de réadaptation, hôpital d'instruction des armées Legouest, 27, avenue de Plantières, BP 90001, 57077 Metz cedex 03, France. Electronic address: armelle.stephan@orange.fr.
authors.forename: A
authors.initials: A
authors.lastname: Stephan-Carlier
authors.affiliation: Service de médecine physique et de réadaptation, hôpital d'instruction des armées Legouest, 27, avenue de Plantières, BP 90001, 57077 Metz cedex 03, France.
authors.forename: J
authors.initials: J
authors.lastname: Facione
authors.affiliation: Pôle S2R, épidémiologie et évaluation cliniques, ESPRI, CHU de Nancy, Nancy 54000, France.
authors.forename: E
authors.initials: E
authors.lastname: Speyer
authors.affiliation: IRR Nancy, CMPRE Flavigny-sur-Moselle, 46, rue du Doyen-Jacques-Parisot, 54630 Flavigny-sur-Moselle, France.
authors.forename: E
authors.initials: E
authors.lastname: Rumilly
authors.affiliation: IRR Nancy, Centre Louis-Pierquin, 75, boulevard Lobau CS 34209, 54042 Nancy cedex, France.
authors.forename: J
authors.initials: J
authors.lastname: Paysant
mesh_terms: D000293:Adolescent; D002547:Cerebral Palsy / Q000503:physiopathology / Q000601:surgery*; D002648:Child; D005260:Female; D005684:Gait; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D017060:Patient Satisfaction; D010465:Perception; D011788:Quality of Life; D011795:Surveys and Questionnaires
keywords: Ambulatory children; Cerebral Palsy (CP); Chirurgie multi-étagée; Enfants marchants; Health-related quality of life; Paralysie cérébrale (PC); Qualité de vie; Satisfaction; Single-event multilevel surgery (SEMS)