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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

  • Susanna L. den Boer (a1), Sara J. Baart (a2), Marijke H. van der Meulen (a1), Gabriëlle G. van Iperen (a3), Ad P. Backx (a4), Arend D. ten Harkel (a5), Lukas A. Rammeloo (a6), Gideon J. du Marchie Sarvaas (a7), Ronald B. Tanke (a8), Willem A. Helbing (a1), Elisabeth M. Utens (a9) and Michiel Dalinghaus (a1)...



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).


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.


Corresponding author

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:


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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

  • Susanna L. den Boer (a1), Sara J. Baart (a2), Marijke H. van der Meulen (a1), Gabriëlle G. van Iperen (a3), Ad P. Backx (a4), Arend D. ten Harkel (a5), Lukas A. Rammeloo (a6), Gideon J. du Marchie Sarvaas (a7), Ronald B. Tanke (a8), Willem A. Helbing (a1), Elisabeth M. Utens (a9) and Michiel Dalinghaus (a1)...


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