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Pediatric Rheumatology
Published in: Pediatric Rheumatology 1/2014

Open Access 01-12-2014 | Research

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

Authors: Lotte Haverman, Hedy A van Oers, Heleen Maurice-Stam, Taco W Kuijpers, Martha A Grootenhuis, Marion AJ van Rossum

Published in: Pediatric Rheumatology | Issue 1/2014

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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 (Chi2, 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.

Conclusion

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.
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Metadata
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
Authors
Lotte Haverman
Hedy A van Oers
Heleen Maurice-Stam
Taco W Kuijpers
Martha A Grootenhuis
Marion AJ van Rossum
Publication date
01-12-2014
Publisher
BioMed Central
Published in
Pediatric Rheumatology / Issue 1/2014
Electronic ISSN: 1546-0096
DOI
https://doi.org/10.1186/1546-0096-12-34

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