Ewa-Lena Bratt1, Koen Luyckx2, Eva Goossens3, Werner Budts4, Philip Moons5. 1. Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden. 2. School Psychology and Child and Adolescent Development, KU Leuven, Leuven, Belgium. 3. Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium. 4. Division of Structural and Congenital Cardiology, University Hospitals of Leuven, Leuven, Belgium. 5. Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium; The Heart Centre, Copenhagen University Hospital, Copenhagen, Denmark. Electronic address: philip.moons@kuleuven.be.
Abstract
PURPOSE: Because life expectancy of patients with congenital heart disease (CHD) has increased substantially, assessment of patient-reported health is seen as an important component in the follow-up. Therefore, we (1) examined patient-reported health status of young people with CHD from a longitudinal perspective; (2) compared patient-reported health of patients with that of controls from the general population; and (3) investigated longitudinal interrelationships among various domains of patient-reported health. METHODS: We included 429 patients with CHD (aged 14-18 years) in a longitudinal study with four measurement points. Patient-reported health status was measured using a linear analog scale for self-rated health and the Pediatric Quality of Life Inventory (PedsQL). RESULTS: Self-rated health was good, with mean scores that slightly decreased from 81.78 to 78.90 from Time 1 to Time 4. PedsQL scores were also good, with the highest scores obtained for physical functioning. Patients with mild heart defects consistently reported higher scores on self-rated health and PedsQL than the general population. The scores of patients with complex heart defects were generally lower than those of the general population. Cross-lagged path analyses demonstrated that symptoms, cognitive functioning, and communication problems constituted the most consistent predictors of perceived health domains over time. CONCLUSIONS: Patient-reported health was considerably good. Domains of patient-reported health that deserve specific attention are symptoms, cognitive functioning, and communication problems. Intervening in these three domains may yield indirect benefits on other health status domains and may improve the overall perceived health status of young people with CHD.
PURPOSE: Because life expectancy of patients with congenital heart disease (CHD) has increased substantially, assessment of patient-reported health is seen as an important component in the follow-up. Therefore, we (1) examined patient-reported health status of young people with CHD from a longitudinal perspective; (2) compared patient-reported health of patients with that of controls from the general population; and (3) investigated longitudinal interrelationships among various domains of patient-reported health. METHODS: We included 429 patients with CHD (aged 14-18 years) in a longitudinal study with four measurement points. Patient-reported health status was measured using a linear analog scale for self-rated health and the Pediatric Quality of Life Inventory (PedsQL). RESULTS: Self-rated health was good, with mean scores that slightly decreased from 81.78 to 78.90 from Time 1 to Time 4. PedsQL scores were also good, with the highest scores obtained for physical functioning. Patients with mild heart defects consistently reported higher scores on self-rated health and PedsQL than the general population. The scores of patients with complex heart defects were generally lower than those of the general population. Cross-lagged path analyses demonstrated that symptoms, cognitive functioning, and communication problems constituted the most consistent predictors of perceived health domains over time. CONCLUSIONS:Patient-reported health was considerably good. Domains of patient-reported health that deserve specific attention are symptoms, cognitive functioning, and communication problems. Intervening in these three domains may yield indirect benefits on other health status domains and may improve the overall perceived health status of young people with CHD.
Authors: Jill C Handisides; Danielle Hollenbeck-Pringle; Karen Uzark; Felicia L Trachtenberg; Victoria L Pemberton; Teresa W Atz; Timothy J Bradley; Elizabeth Cappella; Sylvia De Nobele; Georgeann Keh-Teng Groh; Michelle S Hamstra; Rosalind Korsin; Jami C Levine; Bergen Lindauer; Aimee Liou; Meghan K Mac Neal; Larry W Markham; Tonia Morrison; Kathleen A Mussatto; Aaron K Olson; Mary Ella M Pierpont; Reed E Pyeritz; Elizabeth A Radojewski; Mary J Roman; Mingfen Xu; Ronald V Lacro Journal: J Pediatr Date: 2018-09-27 Impact factor: 4.406
Authors: Markus Saarijärvi; Lars Wallin; Philip Moons; Hanna Gyllensten; Ewa-Lena Bratt Journal: BMC Med Res Methodol Date: 2020-08-03 Impact factor: 4.615