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Pediatrics. 2008 Nov;122(5):e1030-8. doi: 10.1542/peds.2008-0582. Epub 2008 Oct 13.

Hidden consequences of success in pediatrics: parental health-related quality of life--results from the Care Project.

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  • 1Psycho Social Department, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, Netherlands.



The number of parents who care for a chronically ill child is increasing. Because of advances in medical care, parental caring tasks are changing. A detailed description of parental health-related quality of life will add to the understanding of the impact of caring for a chronically ill child. This will contribute to pediatric family care.


Our goal was to determine the health-related quality of life of parents of chronically ill children compared with parents of healthy schoolchildren.


A survey of 533 parents of children with chronic conditions (10 diagnosis groups, children aged 1-19 years, diagnosed >1 year ago, living at home) and 443 parents of schoolchildren was conducted between January 2006 and September 2007. Parents were approached through Emma Children's Hospital (which has a tertiary referral and a regional function) and through parent associations. The comparison group included parents of healthy schoolchildren. Health-related quality of life was assessed with the TNO-AZL Questionnaire for Adult's Health Related Quality of Life.


Health-related quality of life measures gross and fine motor function, cognitive functioning, sleep, pain, social functioning, daily activities, sexuality, vitality, positive and depressive emotions, and aggressiveness. The health-related quality of life of the study group was compared with that of the comparison group, and effect sizes were estimated. The percentages of parents at risk for a low health-related quality of life were compared with the 25th percentile scores of the comparison group. RESULTS. Parents of chronically ill children had a significantly lower health-related quality of life. Subgroup analysis showed lower health-related quality of life on sleep, social functioning, daily activities, vitality, positive emotions, and depressive emotions in disease-specific groups. On average, 45% of the parents were at risk for health-related quality-of-life impairment.


Parents of chronically ill children report a seriously lower health-related quality of life, which should receive attention and supportive care if necessary. A family-centered approach in pediatrics is recommended.

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