title: Health related quality of life and perceptions of child vulnerability among parents of children with a history of Kawasaki disease.
abstract: OBJECTIVE
  Kawasaki disease (KD) is an acute paediatric vasculitis. The psychosocial consequences of this sudden illness for parents are unknown. This study aimed to evaluate health related quality of life (HRQOL) and parental perceptions of child vulnerability (PPCV) in parents of children with KD, and to identify variables associated with PPCV.
  
  
  METHODS
  This cross-sectional study included 288 parents (83% mothers) of KD patients (mean age 8.7 years). HRQOL was assessed using the TNO-AZL Questionnaire for Adult's HRQOL (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). Scores of KD parents were compared with reference groups of Dutch parents. Logistic regression analyses were performed to examine associated variables.
  
  
  RESULTS
  The HRQOL of KD parents was comparable to the HRQOL of parents of healthy children. However, KD parents showed significantly higher PPCV, regarding both the median CVS total score and the percentage in the clinical range. No differences were found in CVS outcomes between KD parents and parents of a chronically ill child. None of the studied parental, child and disease characteristics were significantly associated with PPCV.
  
  
  CONCLUSIONS
  Parents perceived their KD child more vulnerable to illness than healthy children, while in reality the majority had fully recovered from KD.
authors.affiliation: Psychosocial Department, Emma Children's Hospital, Academic Medical Center (AMC), Amsterdam, the Netherlands.
authors.forename: Hedy A
authors.initials: HA
authors.lastname: van Oers
authors.forename: Carline E
authors.initials: CE
authors.lastname: Tacke
authors.forename: Lotte
authors.initials: L
authors.lastname: Haverman
authors.forename: Irene M
authors.initials: IM
authors.lastname: Kuipers
authors.forename: Heleen
authors.initials: H
authors.lastname: Maurice-Stam
authors.forename: Taco W
authors.initials: TW
authors.lastname: Kuijpers
authors.forename: Martha A
authors.initials: MA
authors.lastname: Grootenhuis
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D020407:Internet; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D009080:Mucocutaneous Lymph Node Syndrome; D009426:Netherlands; D010287:Parent-Child Relations; D016487:Parenting / Q000523:psychology*; D010465:Perception; D011788:Quality of Life; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires
keywords: Child vulnerability; Health related quality of life; Kawasaki disease; Parental perception; Psychosocial