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Health-Related Quality of Life in Children and Young Adults with Marfan Syndrome

Handisides, J. C.; Hollenbeck-Pringle, D.; Uzark, K.; Trachtenberg, F. L.; Pemberton, V. L.; Atz, T. W.; Bradley, T. J.; Cappella, E.; De Nobele, S.; Groh, G. K.; Hamstra, M. S.; Korsin, R.; Levine, J. C.; Lindauer, B.; Liou, A.; Neal, M. K. M.; Markham, L. W.; Morrison, T.; Mussatto, K. A.; Olson, A. K.; Pierpont, M. E. M.; Pyeritz, R. E.; Radojewski, E. A.; Roman, M. J.; Xu, M.; Lacro, R. V.

J Pediatr. 2018 Oct 3; 204:250-255.e1

Abstract

OBJECTIVE: To assess health-related quality of life (HRQOL) in a large multicenter cohort of children and young adults with Marfan syndrome participating in the Pediatric Heart Network Marfan Trial. STUDY DESIGN: The Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales were administered to 321 subjects with Marfan syndrome (5-25 years). PedsQL scores were compared with healthy population norms. The impact of treatment arm (atenolol vs losartan), severity of clinical features, and number of patient-reported symptoms on HRQOL was assessed by general linear models. RESULTS: Mean PedsQL scores in children (5-18 years) with Marfan syndrome were lower than healthy population norms for physical (P

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