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Health-related quality of life in pre-school age children with single-ventricle CHD

Published online by Cambridge University Press:  02 January 2019

Kristina N. Heye Open the ORCID record for Kristina N. Heye [Opens in a new window] ,
Walter Knirsch ,
Ianina Scheer ,
Ingrid Beck ,
Kristina Wetterling ,
Andreas Hahn ,
Karoline Hofmann ,
Beatrice Latal ,
Bettina Reich  and
Markus A. Landolt
Kristina N. Heye*
Affiliation:
Child Research Centre, University Children’s Hospital, Zurich, Switzerland Child Development Centre, University Children’s Hospital, Zurich, Switzerland Paediatric Cardiology, Paediatric Heart Centre, University Children’s Hospital, Zurich, Switzerland
Walter Knirsch
Affiliation:
Child Research Centre, University Children’s Hospital, Zurich, Switzerland Paediatric Cardiology, Paediatric Heart Centre, University Children’s Hospital, Zurich, Switzerland
Ianina Scheer
Affiliation:
Child Research Centre, University Children’s Hospital, Zurich, Switzerland Diagnostic Imaging and MR-research Centre, University Children’s Hospital, Zurich, Switzerland
Ingrid Beck
Affiliation:
Child Development Centre, University Children’s Hospital, Zurich, Switzerland
Kristina Wetterling
Affiliation:
Child Development Centre, SPZ Frankfurt Mitte, Frankfurt/Main, Germany
Andreas Hahn
Affiliation:
Paediatric Neurology, University Hospital Giessen, Germany
Karoline Hofmann
Affiliation:
Paediatric Heart Centre, University Hospital Giessen, Justus-Liebig-University, Giessen, Germany
Beatrice Latal
Affiliation:
Child Research Centre, University Children’s Hospital, Zurich, Switzerland Child Development Centre, University Children’s Hospital, Zurich, Switzerland
Bettina Reich
Affiliation:
Paediatric Heart Centre, University Hospital Giessen, Justus-Liebig-University, Giessen, Germany
Markus A. Landolt
Affiliation:
Child Research Centre, University Children’s Hospital, Zurich, Switzerland Department of Psychosomatics and Psychiatry, University Children’s Hospital Zurich, Zurich, Switzerland Division of Child and Adolescent Health Psychology, Department of Psychology, University of Zurich, Zurich, Switzerland
*
Author for correspondence: K. N. Heye, MD, University Children’s Hospital, Steinwiesstrasse 75, 8032 Zurich, Switzerland. Tel: +41 76 498 73 63; Fax: +41 44 266 64 71; E-mail: kristina.heye@kispi.uzh.ch
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Abstract

Background

Little is known about health-related quality of life in young children undergoing staged palliation for single-ventricle CHD. The aim of this study was to assess the impact of CHD on daily life in pre-schoolers with single-ventricle CHD and to identify determinants of health-related quality of life.

Method

Prospective two-centre cohort study assessing health-related quality of life using the Preschool Paediatric Cardiac Quality of Life Inventory in 46 children at a mean age of 38 months and 3 weeks. Children with genetic anomalies were excluded. Scores were compared with reference data of children with biventricular CHD. Multiple linear regression analysis was used to identify determinants of health-related quality of life.

Results

Health-related quality of life in pre-schoolers with single-ventricle CHD was comparable to children with biventricular CHD. Preterm birth and perioperative variables were significant predictors of low health-related quality of life. Notably, pre-Fontan brain MRI findings and neurodevelopmental status were not associated with health-related quality of life. Overall, perioperative variables explained 24% of the variability of the total health-related quality of life score.

Interpretation

Despite substantial health-related burden, pre-schoolers with single-ventricle CHD showed good health-related quality of life. Less-modifiable treatment-related risk factors and preterm birth had the highest impact on health-related quality of life. Long-term follow-up assessment of self-reported health-related quality of life is needed to identify patients with poorer health-related quality of life and to initiate supportive care.

Keywords

Health-related quality of liferisk factorssingle-ventricleCHD
Type
Original Article
Information
Cardiology in the Young , Volume 29 , Issue 2 , February 2019 , pp. 162 - 168
Copyright
© Cambridge University Press 2019 

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Footnotes

*

The authors contributed equally to the manuscript

Cite this article: Heye KN, Knirsch W, Scheer I, Beck I, Wetterling K, Hahn A, Hofmann K, Latal B, Reich B, Landolt MA. (2018) Health-related quality of life in pre-school age children with single-ventricle CHD. Cardiology in the Young page 162 of 168. doi: 10.1017/S1047951118001993

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