Quality of Life of Pediatric Patients With Long QT Syndrome

Czosek, R. J.; Kaltman, J. R.; Cassedy, A. E.; Shah, M. J.; Vetter, V. L.; Tanel, R. E.; Wernovksy, G.; Wray, J.; Marino, B. S.

Am J Cardiol. 2016 Jan 2; 117(4):605-10


Children with long QT syndrome (LQTS) live with the risk of sudden death, activity restrictions, and the need for daily medications. We sought to evaluate the quality of life (QOL), self-perception, and behavior of patients with LQTS as perceived by both patients and their parents and identify predictors of lower QOL. QOL (Pediatric QOL Inventory [PedsQL] and Pediatric Cardiac Quality of Life Inventory [PCQLI]), self-perception, and behavioral inventories were completed by patients with LQTS and their parents. Comparison of PedsQL scores was made to published data for healthy children using t tests, and PCQLI scores were compared with those of patients with differing complexity of congenital heart disease. Mixed modeling was used for multivariable analysis. Sixty-one patients with LQTS were evaluated (age 13.6 +/- 3.0 years; male 49%). Compared with healthy children, the PedsQL Total, Psychosocial, and Physical Health Summary scores were significantly lower for patients with LQTS and parent proxy reports (p /=0.2), lower than those of patients with bicuspid aortic valve (p

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