Faculty Collaboration Database

Children and adolescents with repaired tetralogy of fallot report quality of life similar to healthy peers. Congenit Heart Dis 2011;6(1):18-27

Date

01/29/2011

Pubmed ID

21269409

DOI

10.1111/j.1747-0803.2010.00481.x

Scopus ID

2-s2.0-79251470783 (requires institutional sign-in at Scopus site)   39 Citations

Abstract

OBJECTIVE: The study aims to evaluate and compare self-reported and parent proxy-reported quality of life (QOL) in pediatric patients with repaired tetralogy of Fallot (TOF) and determine relationships with residual disease.

DESIGN: QOL was prospectively evaluated in children/adolescents with repaired TOF and parents' proxy report using the Pediatric Quality of Life Inventory Generic Core and Cardiac Module scales. The scores were compared with published self and parent proxy-reported normative data for children considered healthy, chronically ill, and with congenital heart disease. Recent clinical data were reviewed for correlations between QOL and residual disease severity.

RESULTS: Twenty child-parent pairs were assessed at median age of 10.9 years (range 8.4-18.7 years). Self-report was higher than parent proxy report. Compared with peers, self-reported QOL was higher than for chronically ill children (overall QOL 85 vs. 77, P= 0.007) and similar to healthy children (85 vs. 83, P= 0.44), while proxy report by parent was similar to parents of chronically ill children (overall QOL 77 vs. 74, P= 0.035). Despite moderate pulmonary regurgitation (mean 35%) and right ventricular dilation (mean 114 mL/m(2) ), 76% had a New York Heart Association class of 1, normal B-natriuretic peptide (24 pg/mL), reasonable exercise tolerance VO(2) max% predicted (mean 77%), and preserved right ventricular ejection fraction (mean 58%, range 44-80%). Overall QOL positively correlated with child's VO(2) max% predicted, when reported by child (r = 0.47, P < 0.05) and parent proxy (r = 0.63, P < 0.05).

CONCLUSIONS: QOL in children/adolescents with repaired TOF is not proportional to the severity of their residual disease. Self-reported QOL appears similar to healthy peers while parent proxy reported lower QOL. For both children and parents, QOL positively correlated with the child's exercise capacity. Therefore, comprehensive follow-up should include cardiac rehabilitation and psychosocial evaluation to ensure an active lifestyle, improve health perception, and prevent later acquired heart disease.

Author List

Kwon EN, Mussatto K, Simpson PM, Brosig C, Nugent M, Samyn MM

Authors

Cheryl L. Brosig Soto PhD Chief, Professor in the Pediatrics department at Medical College of Wisconsin
Kathleen Mussatto Ph.D. Associate Professor in the School of Nursing department at Milwaukee School of Engineering
Margaret Mary Samyn MD Professor in the Pediatrics department at Medical College of Wisconsin
Pippa M. Simpson PhD Adjunct Professor in the Pediatrics department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Adolescent
Cardiac Surgical Procedures
Case-Control Studies
Child
Emotions
Exercise Tolerance
Female
Humans
Magnetic Resonance Imaging
Male
Parents
Peer Group
Prospective Studies
Pulmonary Circulation
Quality of Life
Self Report
Social Behavior
Stroke Volume
Surveys and Questionnaires
Tetralogy of Fallot
Treatment Outcome
Ventricular Function, Right
Wisconsin