title: Health related quality of life and parental perceptions of child vulnerability among parents of a child with juvenile idiopathic arthritis: results from a web-based survey.
abstract: BACKGROUND
  A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA.
  
  
  METHODS
  Parents of all JIA patients (0-18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi(2), Mann-Whitney U test). Variables associated with PPCV were identified by logistic regression analyses.
  
  
  RESULTS
  155 parents (87.5% mothers) completed online questionnaires. JIA parents showed worse HRQOL than parents of healthy children on one out of twelve domains: fine motor HRQOL (p < .001). Parents of children with active arthritis showed worse HRQOL regarding daily activities (p < .05), cognitive functioning (p < .01) and depressive emotions (p < .05) compared to parents of children without active arthritis. Parents of children with JIA perceived their child as more vulnerable than parents of a healthy child (p < .001) and parents of a chronically ill child (p < .001). Parents of children with active arthritis reported higher levels of PPCV (p < .05) than parents of children without active arthritis. A higher degree of functional disability (p < .01) and shorter disease duration (p < .05) were associated with higher levels of PPCV.
  
  
  CONCLUSIONS
  The HRQOL of JIA parents was comparable to the HRQOL of parents of a healthy child. JIA parents of a child with active arthritis showed worse HRQOL than parents of a child without active arthritis. Parents perceived their child with JIA as vulnerable.
authors.affiliation: Psychosocial Department, Academic Medical Center, Emma Children's A3-241 Hospital, Postbox 22660, Amsterdam 1100 DD, the Netherlands.
authors.forename: Lotte
authors.initials: L
authors.lastname: Haverman
authors.affiliation: Psychosocial Department, Academic Medical Center, Emma Children's A3-241 Hospital, Postbox 22660, Amsterdam 1100 DD, the Netherlands.
authors.forename: Hedy A
authors.initials: HA
authors.lastname: van Oers
authors.affiliation: Psychosocial Department, Academic Medical Center, Emma Children's A3-241 Hospital, Postbox 22660, Amsterdam 1100 DD, the Netherlands.
authors.forename: Heleen
authors.initials: H
authors.lastname: Maurice-Stam
authors.affiliation: Department of Pediatric Hematology, Immunology and Infectious Diseases, Academic Medical Center, Emma Children's Hospital, Amsterdam, the Netherlands.
authors.forename: Taco W
authors.initials: TW
authors.lastname: Kuijpers
authors.affiliation: Psychosocial Department, Academic Medical Center, Emma Children's A3-241 Hospital, Postbox 22660, Amsterdam 1100 DD, the Netherlands.
authors.forename: Martha A
authors.initials: MA
authors.lastname: Grootenhuis
authors.affiliation: Department of Pediatric Hematology, Immunology and Infectious Diseases, and Reade (Location Jan van Breemen), Department of Pediatric Rheumatology, Amsterdam, the Netherlands.
authors.forename: Marion Aj
authors.initials: MA
authors.lastname: van Rossum
mesh_terms: D000328:Adult; D001171:Arthritis, Juvenile / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D004185:Disability Evaluation; D019988:Children with Disabilities / Q000523:psychology*; D005260:Female; D006306:Health Surveys; D006801:Humans; D020407:Internet; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010290:Parents / Q000523:psychology*; D010465:Perception; D011584:Psychology; D011788:Quality of Life / Q000523:psychology*; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires
keywords: Caregivers; Child vulnerability; Disease activity; Health related quality of life; Juvenile idiopathic arthritis; Parents; Pediatrics; Psychosocial factors