Children and adolescents with repaired tetralogy of fallot report quality of life similar to healthy peers.
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.


METHODS
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.
Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA.
Elena N
EN
Kwon
Kathleen
K
Mussatto
Pippa M
PM
Simpson
Cheryl
C
Brosig
Melodee
M
Nugent
Margaret M
MM
Samyn
D000293:Adolescent; D006348:Cardiac Surgical Procedures; D016022:Case-Control Studies; D002648:Child; D004644:Emotions; D017079:Exercise Tolerance; D005260:Female; D006801:Humans; D008279:Magnetic Resonance Imaging; D008297:Male; D010290:Parents / Q000523:psychology; D010379:Peer Group; D011446:Prospective Studies; D011652:Pulmonary Circulation; D011788:Quality of Life; D057566:Self Report; D012919:Social Behavior; D013318:Stroke Volume; D011795:Surveys and Questionnaires; D013771:Tetralogy of Fallot / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology / Q000628:therapy*; D016896:Treatment Outcome; D016278:Ventricular Function, Right; D014922:Wisconsin