Parent reports of health-related quality of life and heart failure severity score independently predict outcome in children with dilated cardiomyopathy.

Autor:	den Boer SL; 1Department of Pediatrics,Division of Pediatric Cardiology,Sophia Children's Hospital,Rotterdam,The Netherlands., Baart SJ; 2Department of Cardiology,Erasmus University Medical Center,Rotterdam,Erasmus University Medical Center,Rotterdam,The Netherlands., van der Meulen MH; 1Department of Pediatrics,Division of Pediatric Cardiology,Sophia Children's Hospital,Rotterdam,The Netherlands., van Iperen GG; 3Department of Pediatrics,Division of Pediatric Cardiology,Wilhelmina Children's Hospital,University Medical Center Utrecht,Utrecht,The Netherlands., Backx AP; 4Department of Pediatrics,Division of Pediatric Cardiology,Emma Children's Hospital,Academic Medical Center,Amsterdam,The Netherlands., Ten Harkel AD; 5Department of Pediatrics,Division of Pediatric Cardiology,Leiden University Medical Center,Leiden,The Netherlands., Rammeloo LA; 6Department of Pediatrics,Division of Pediatric Cardiology,Free University Medical Center,Amsterdam,Amsterdam., du Marchie Sarvaas GJ; 7Department of Pediatrics,Division of Pediatric Cardiology, Beatrix Children's Hospital,University of Groningen, Groningen,The Netherlands., Tanke RB; 8Department of Pediatrics, Division of Pediatric,Cardiology,RadboudUniversity Medical Center,Nijmegen,The Netherlands., Helbing WA; 1Department of Pediatrics,Division of Pediatric Cardiology,Sophia Children's Hospital,Rotterdam,The Netherlands., Utens EM; 9Department of Child and Adolescent Psychiatry/Psychology,Sophia Children's Hospital,Erasmus University Medical Center,Rotterdam,The Netherlands., Dalinghaus M; 1Department of Pediatrics,Division of Pediatric Cardiology,Sophia Children's Hospital,Rotterdam,The Netherlands.
Jazyk:	angličtina
Zdroj:	Cardiology in the young [Cardiol Young] 2017 Aug; Vol. 27 (6), pp. 1194-1202. Date of Electronic Publication: 2017 Mar 14.
DOI:	10.1017/S1047951116002833
Abstrakt:	Background: Dilated cardiomyopathy in children causes heart failure and has a poor prognosis. Health-related quality of life in this patient group is unknown. Moreover, results may provide detailed information of parents' sense of their child's functioning. We hypothesised that health-related quality of life, as rated by parents, and the paediatric heart failure score, as assessed by physicians, have both predictive value on outcome. Methods and results In this prospective study, health-related quality of life was assessed by parent reports: the Infant Toddler Quality of Life questionnaire (0-4 years) or Child Health Questionnaire-Parent Form 50 (4-18 years) at 3-6-month intervals. We included 90 children (median age 3.8 years, interquartile range (IQR) 0.9-12.3) whose parents completed 515 questionnaires. At the same visit, physicians completed the New York University Pediatric Heart Failure Index. Compared with Dutch normative data, quality of life was severely impaired at diagnosis (0-4 years: 7/10 subscales and 4-18 years: 8/11 subscales) and ⩾1 year after diagnosis (3/10 and 6/11 subscales). Older children were more impaired (p<0.05). After a median follow-up of 3 years (IQR 2-4), 15 patients underwent transplantation. Using multivariable time-dependent Cox regression, "physical functioning" subscale and the Heart Failure Index were independently predictive of the risk of death and heart transplantation (hazard ratio 1.24 per 10% decrease of predicted, 95% confidence interval (CI) 1.06-1.47 and hazard ratio 1.38 per unit, 95% CI 1.19-1.61, respectively). Conclusion: Physical impairment rated by parents and heart failure severity assessed by physicians independently predicted the risk of death or heart transplantation in children with dilated cardiomyopathy.
Databáze:	MEDLINE
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