Published online October 19, 2009
PEDIATRICS Vol. 124 No. 5 November 2009, pp. e942-e949 (doi:10.1542/peds.2008-1697)

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ARTICLE

Parent- Versus Child-Reported Functional Health Status After the Fontan Procedure

Linda M. Lambert, FNP, MSN^a, L. LuAnn Minich, MD^b, Jane W. Newburger, MD, MPH^c, Minmin Lu, MS^d, Victoria L. Pemberton, RN^e, Ellen A. McGrath, RN^c, Andrew M. Atz, MD^f, Mingfen Xu, RN^g, Elizabeth Radojewski, RN^h, Darlene Servedio, RNⁱ, Brian W. McCrindle, MD, MPH^h for the Pediatric Heart Network Investigators

^a Department of Cardiothoracic
^b Department of Pediatrics, Primary Children's Medical Center and University of Utah, Salt Lake City, Utah
^c Department of Pediatrics, Children's Hospital Boston, Boston, Massachusetts
^d New England Research Institutes, Watertown, Massachusetts
^e National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, Maryland
^f Department of Pediatrics, Medical University of South Carolina, Charleston, South Carolina
^g Department of Pediatrics, Duke University Medical Center, Durham, North Carolina
^h Department of Pediatrics, University of Toronto and Hospital for Sick Children, Toronto, Canada
ⁱ Department of Pediatrics, Columbia University Medical Center, New York, New York

OBJECTIVE: We sought to compare perceptions of functional health status between children who had undergone a Fontan procedure and their parents.

METHODS: Fontan procedure survivors 10 to 18 years of age were included in the study if the child completed the Child Health Questionnaire (CHQ) and the parent completed the parent form to assess the child's functional health status. Comparisons were made between raw domain scores for the parent- and child-completed CHQs.

RESULTS: Between March 2003 and April 2004, 1078 Fontan survivors were screened. Of the 546 eligible and consented patients, 354 were 10–18 years of age and 328 parent/child pairs completed the CHQs. Parents reported significantly lower scores (worse functioning) for their children than the children reported for themselves in the domains of physical functioning (P < .01), impact on school or activities from emotional and behavioral problems (P < .01), impact on school or activities from physical health issues (P < .01), general behavior (P < .01), mental health (P < .01), self-esteem (P < .01), and general health perceptions (P < .01). No significant differences were noted for the domains of bodily pain, family cohesiveness, or family activities. For the physical functioning domain, factors contributing to lower scores for parent versus child reports included pulmonary artery anomalies and fenestration at the time of the Fontan operation. Lower parent-reported scores also were associated with more noncardiac health problems in the child.

CONCLUSIONS: Parents' perceptions of the functional health status of their children after the Fontan procedure were worse than the children's perceptions.

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Key Words: Fontan procedure • congenital heart disease • single ventricle • functional health status • quality of life

Abbreviations: CHQ—Child Health Questionnaire • CHD—congenital heart defect

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Accepted Jun 5, 2009.

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