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Scrutinizing Patient-Reported Health Status in Young People with Congenital Heart Disease

Conference contribution
Authors Ewa-Lena Bratt
Koen Luyckx
Eva Goossens
Werner Budts
Philip Moons
Published in 18th Annual Update on Pediatric and Congenital Cardiovascular Disease - Challenges and Dilemmas. Feb 11-15, 2015. Scottsdale, Arizona, US.
Publication year 2015
Published at Institute of Health and Care Sciences
Language en
Subject categories Health Sciences


Purpose: To examine the patient-reported health status of young people with congenital heart disease (CHD) from a longitudinal perspective; to compare the patient-reported health of young people with CHD to that of healthy peers; and to investigate the longitudinal interrelationships among the various domains of patient-reported health. Conceptual framework: Assessment of patient-reported health is important in the long-term follow-up. Methods: Design: Longitudinal, observational study with 4 measurements and 9 months intervals. Setting: Tertiary care center in Belgium. Sample: 429 young people with CHD aged 14-18 years. Instruments: A Linear Analogue Scale (LAS) and the Pediatric Quality of Life Inventory (PedsQL). Analysis: Repeated measures ANOVA and cross-lagged analysis. Major findings: Self-rated health was good, with mean LAS scores that slightly decreased from 81.78 to 78.90 over 27 months (F=13.33;P<.001). PedsQL scores were also good, with the highest scores obtained for physical functioning (range 86.24-87.04). A significant deterioration over time was observed for emotional functioning (F=5.81;P<.001); a significant improvement was found for cognitive problems (F=4.941;P<.01) and communication (F=4.51;P<.01). Patients with mild heart defects consistently reported higher scores than the general population. Scores of patients with complex defects were generally lower than those of the general population. Cross-lagged analyses demonstrated that symptoms, cognitive functioning and communication problems constituted the most consistent predictors of perceived health domains over time (P<.01). Conclusions: Patient-reported health in young people with CHD was considerable high. Domains that deserve specific attention are symptoms, cognitive functioning and communication problems. Implications of study: Interventions that focus on improving these three domains may yield indirect benefits on other health status domains as well as improve the overall perceived health status.

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