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

Published online by Cambridge University Press:  14 March 2017

Susanna L. den Boer ,
Sara J. Baart ,
Marijke H. van der Meulen ,
Gabriëlle G. van Iperen ,
Ad P. Backx ,
Arend D. ten Harkel ,
Lukas A. Rammeloo ,
Gideon J. du Marchie Sarvaas ,
Ronald B. Tanke  and
Willem A. Helbing
...Show all authors
Susanna L. den Boer
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Sophia Children’s Hospital, Rotterdam, The Netherlands
Sara J. Baart
Affiliation:
Department of Cardiology,Erasmus University Medical Center, Rotterdam, Erasmus University Medical Center, Rotterdam, The Netherlands
Marijke H. van der Meulen
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Sophia Children’s Hospital, Rotterdam, The Netherlands
Gabriëlle G. van Iperen
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, The Netherlands
Ad P. Backx
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Emma Children’s Hospital, Academic Medical Center, Amsterdam, The Netherlands
Arend D. ten Harkel
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Leiden University Medical Center, Leiden, The Netherlands
Lukas A. Rammeloo
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Free University Medical Center, Amsterdam, Amsterdam
Gideon J. du Marchie Sarvaas
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Beatrix Children’s Hospital, University of Groningen, Groningen, The Netherlands
Ronald B. Tanke
Affiliation:
Department of Pediatrics, Division of Pediatric, Cardiology, RadboudUniversity Medical Center, Nijmegen, The Netherlands
Willem A. Helbing
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Sophia Children’s Hospital, Rotterdam, The Netherlands
Elisabeth M. Utens
Affiliation:
Department of Child and Adolescent Psychiatry/Psychology, Sophia Children’s Hospital, Erasmus University Medical Center, Rotterdam, The Netherlands
Michiel Dalinghaus*
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Sophia Children’s Hospital, Rotterdam, The Netherlands
*
Correspondence to: M. Dalinghaus, MD, PhD, Department of Pediatrics, Division of Pediatric Cardiology, Sophia Children’s Hospital, Erasmus University Medical Centre, Dr. Molewaterplein 60, PO Box 2060, 3000 CB Rotterdam, The Netherlands. Tel: +0031 10 703 6022; Fax: +0031 10 703 6801; E-mail: [email protected]
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Abstract

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.

Keywords

Quality of lifeoutcomedilated cardiomyopathychildrenNew York University Pediatric Heart Failure Index
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 6 , August 2017 , pp. 1194 - 1202
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Copyright
© Cambridge University Press 2017 

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