Published online October 13, 2008
PEDIATRICS Vol. 122 No. 5 November 2008, pp. e1030-e1038 (doi:10.1542/10.1542/peds.2008-0582)
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ARTICLE

Hidden Consequences of Success in Pediatrics: Parental Health-Related Quality of Life—Results From the Care Project

Janneke Hatzmann, MSca, Hugo S. A. Heymans, MD, PhDb, Ada Ferrer-i-Carbonell, PhDc, Bernard M. S. van Praag, PhDd and Martha A. Grootenhuis, PhDa

a Psycho Social Department
b Department of Pediatrics, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, Netherlands
c Catalan Institute for Advanced Research and Institut d'Anàlisi Econòmica, Barcelona, Spain
d University of Amsterdam School of Economics, Schooling, Labor Market and Economic Development (SCHOLAR), Amsterdam Institute for Advanced Labour Studies and Tinbergen Institute, Amsterdam, Netherlands

CONTEXT. 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.

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

DESIGN, SETTING, AND PARTICIPANTS. 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.

MAIN OUTCOME MEASURE. 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.

CONCLUSIONS. 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.

Key Words: caregiver • health-related quality of life • chronic condition childhood

Abbreviations: HRQoL—health-related quality of life • TAAQoL—TNO-AZL Questionnaire for Adult's Health Related Quality of Life • SES—socioeconomic status

Accepted Jul 17, 2008.


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