title: Health-related quality of life in children and adolescents with stroke, self-reports, and parent/proxies reports: cross-sectional investigation.
abstract: OBJECTIVE
  Limited data are available on health-related quality of life (HR-QoL) in pediatric stroke survivors. The aim of the present study was to assess HR-QoL by self-assessment and parent/proxy-assessment in children and adolescents who survived a first stroke episode.
  
  
  METHODS
  We investigated HR-QoL in pediatric stroke survivors (71 preschool children [G1] and 62 school children/adolescents [G2]) and in 169 healthy controls. HR-QoL was assessed in patients and parents/proxies with the generic KINDL-R questionnaire exploring overall well-being and 6 well-being subdimensions (physical, psychological, self-esteem, family-related, friend-related, and school-related). In pediatric stroke survivors the neurological long-term outcome was measured with the standardized Pediatric Stroke Outcome Measure.
  
  
  RESULTS
  Of stroke survivors, 65% exhibited at least 1 neurologic disability. Pediatric stroke survivors reported lower overall well-being compared with healthy controls. In G2 stroke patients, friend-related well-being respectively emotional well-being was significantly reduced compared with healthy controls (73.0 vs 85.0 points; p < 0.001 respectively 80.2 vs 84.5 points; p = 0.049). Parents/proxies of both stroke survivors rated the overall well-being and all subdimensions (except family-related and school-related well-being in G1 and G2 stroke survivors and physical functioning in G2 stroke survivors) lower compared with parents/proxies of healthy children/adolescents. Overall well-being was significantly reduced in children with moderate/severe neurological deficits compared with normal/mildly affected patients (75.5 vs 83.3 points, p = 0.01). Neonatal stroke survivors reported a significantly better neurological long-term outcome compared to childhood stroke survivors (82.0 vs 75.0 points; p = 0.005).
  
  
  CONCLUSIONS
  Pediatric stroke survivors compared with healthy controls are strongly affected regarding their overall well-being and older children/adolescents regarding their well-being with peers.
authors.affiliation: Department of Clinical Epidemiology and Social Medicine, University of Münster, Münster, Germany.
authors.forename: Bruno
authors.initials: B
authors.lastname: Neuner
authors.forename: Sylvia
authors.initials: S
authors.lastname: von Mackensen
authors.forename: Anne
authors.initials: A
authors.lastname: Krümpel
authors.forename: Daniela
authors.initials: D
authors.lastname: Manner
authors.forename: Sharon
authors.initials: S
authors.lastname: Friefeld
authors.forename: Sarah
authors.initials: S
authors.lastname: Nixdorf
authors.forename: Michael
authors.initials: M
authors.lastname: Frühwald
authors.forename: Gabrielle
authors.initials: G
authors.lastname: deVeber
authors.forename: Ulrike
authors.initials: U
authors.lastname: Nowak-Göttl
mesh_terms: D000293:Adolescent; D000367:Age Factors; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D005260:Female; D005500:Follow-Up Studies; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D009422:Nervous System Diseases / Q000453:epidemiology / Q000209:etiology / Q000523:psychology; D010290:Parents / Q000523:psychology*; D019727:Proxy / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D057566:Self Report / Q000592:standards; D020521:Stroke / Q000150:complications / Q000453:epidemiology / Q000523:psychology*; D011795:Surveys and Questionnaires / Q000592:standards; D055815:Young Adult