Health related quality of life and perceptions of child vulnerability among parents of children with a history of Kawasaki disease

作者：van Oers Hedy A^*; Tacke Carline E; Haverman Lotte; Kuipers Irene M; Maurice Stam Heleen; Kuijpers Taco W; Grootenhuis Martha A

来源：Acta Paediatrica, 2014, 103(6): 671-677.

DOI：10.1111/apa.12619

• Child vulnerability
• Health related quality of life
• Kawasaki disease
• Parental perception
• Psychosocial

AimKawasaki 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.
MethodsThis cross-sectional study included 288 parents (83% mothers) of KD patients (mean age 8.7years). 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.
ResultsThe 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.
ConclusionParents perceived their KD child more vulnerable to illness than healthy children, while in reality the majority had fully recovered from KD.

• 出版日期2014-6