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Functional health status in children and adolescents after Fontan: comparison of generic and disease-specific assessments

Published online by Cambridge University Press:  10 June 2013

Brian W. McCrindle
Affiliation:
The Hospital for Sick Children, University of Toronto, Toronto, Canada
Victor Zak
Affiliation:
New England Research Institutes, Watertown, Massachusetts
Victoria L. Pemberton
Affiliation:
National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, Maryland
Linda M. Lambert
Affiliation:
Primary Children's Medical Center, University of Utah, Salt Lake City, Utah
Victoria L. Vetter
Affiliation:
The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
Wyman W. Lai
Affiliation:
Columbia University Medical Center, New York, New York
Karen Uzark
Affiliation:
Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio
Renee Margossian
Affiliation:
Children's Hospital Boston, Boston, Massachusetts
Andrew M. Atz
Affiliation:
Medical University of South Carolina, Charleston, South Carolina
Amanda Cook
Affiliation:
Wake Forest University Baptist Medical Center, Winston-Salem, North Carolina
Jane W. Newburger
Affiliation:
Children's Hospital Boston, Boston, Massachusetts
Corresponding

Abstract

Purpose: The aim of this study was to compare associations between generic versus disease-specific functional health status assessments and patient and clinical characteristics for patients with severe congenital heart disease. Methods: This was a cross-sectional observational study involving 325 single ventricle patients, aged 10–18 years, after Fontan procedure. Enrolled patients underwent a medical history review, laboratory testing, and assessment of the functional health status by completion of the generic Child Report Child Health Questionnaire and the disease-specific Congenital Heart Adolescent and Teenage questionnaire. Correlated conceptually equivalent domains from both questionnaires were identified and their associations with patient and clinical variables were compared. Results: From the generic assessment, patients perceived marginally lower physical functioning (p = 0.05) but greater freedom from bodily pain compared with a normal population (p < 0.001). The equivalent physical functioning/limitations domain of the generic instrument, compared with the disease-specific instrument, had similar associations (higher multi-variable model R2) with medical history variables (R2 = 0.14 versus R2 = 0.12, respectively) and stronger associations with exercise testing variables (R2 = 0.22 versus R2 = 0.06). Similarly, the corresponding freedom from bodily pain/symptoms domains from both questionnaires showed a greater association for the generic instrument with medical history variables (R2 = 0.15 versus R2 = 0.09, respectively) and non-cardiac conditions (R2 = 0.13 versus R2 = 0.06). The associations of each questionnaire with echocardiographic results, cardiac magnetic resonance imaging results, and serum brain natriuretic peptide levels were uniformly weak (R2 range <0.01 to 0.04). Conclusions: Assessment of the physical functional health status using generic and disease-specific instruments yields few differences with regard to associations between conceptually similar domains and patient and clinical characteristics for adolescents after Fontan procedure.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2013 

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Supplementary material: File

McCrindle Supplementary Material

Acknowledgements

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Supplementary material: File

McCrindle Supplementary Material

Table S1

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