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

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.

journal_name

Cardiol Young

journal_title

Cardiology in the young

authors

McCrindle BW,Zak V,Pemberton VL,Lambert LM,Vetter VL,Lai WW,Uzark K,Margossian R,Atz AM,Cook A,Newburger JW,Pediatric Heart Network Investigators.

doi

10.1017/S1047951113000632

subject

Has Abstract

pub_date

2014-06-01 00:00:00

pages

469-77

issue

eissn

1047-9511

issn

1467-1107

pii

S1047951113000632

journal_volume

pub_type

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