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Predictors of health-related quality of life in children with chronic heart disease

Published online by Cambridge University Press:  18 May 2017

Mandy Niemitz ,
Diana C. M. Gunst ,
Hedwig H. Hövels-Gürich ,
Michael Hofbeck ,
Renate Kaulitz ,
Christoph Galm ,
Felix Berger ,
Nicole Nagdyman ,
Brigitte Stiller  and
Thomas Borth-Bruhns
...Show all authors
Mandy Niemitz*
Affiliation:
Department of Child and Adolescent Psychiatry/Psychotherapy, University Ulm Medical Centre, Ulm, Germany
Diana C. M. Gunst
Affiliation:
Department of Child and Adolescent Psychiatry/Psychotherapy, University Ulm Medical Centre, Ulm, Germany
Hedwig H. Hövels-Gürich
Affiliation:
Department of Pediatric Cardiology, University Aachen, Germany
Michael Hofbeck
Affiliation:
Department of Pediatric Cardiology, Pulmonology and Intensive Care Medicine, University Tübingen Medical Centre, Germany
Renate Kaulitz
Affiliation:
Department of Pediatric Cardiology, Pulmonology and Intensive Care Medicine, University Tübingen Medical Centre, Germany
Christoph Galm
Affiliation:
Physician, Pediatric Praxis, Biberach, Germany
Felix Berger
Affiliation:
Department of Congenital Heart Diseases/Pediatric Cardiology, German Cardiology Centre Berlin, Germany
Nicole Nagdyman
Affiliation:
German Cardiology Centre Munich, Munich University of Technology, Germany
Brigitte Stiller
Affiliation:
Department of Pediatrics and Adolescent Medicine, University Freiburg Medical Centre, Germany
Thomas Borth-Bruhns
Affiliation:
Sana clinic in Remscheid, (academic) teaching hospital of the University Cologne, Germany
Ines Konzag
Affiliation:
Pediatric Aftercare Clinic, Berlin-Brandenburg gGmbH, Bernau-Waldsiedlung, Germany
Christian Balmer
Affiliation:
Department of Cardiology, University Children’s Hospital Zurich, Switzerland
Lutz Goldbeck
Affiliation:
Department of Child and Adolescent Psychiatry/Psychotherapy, University Ulm Medical Centre, Ulm, Germany
*
Correspondence to: M. Niemitz, Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Steinhoevelstr. 1, D-89075 Ulm, Germany. Tel: +49 731 500 62660; Fax +49 731 500 62669; E-mail: mandy.niemitz@uniklinik-ulm.de
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Abstract

Objective

Chronic paediatric heart disease is often associated with residual symptoms, persisting functional restrictions, and late sequelae for psychosocial development. It is, therefore, increasingly important to evaluate the health-related quality of life of children and adolescents with chronic heart disease. The aim of this study was to determine medical and socio-demographic variables affecting health-related quality of life in school-aged children and adolescents with chronic heart disease.

Patients and methods

The Pediatric Cardiac Quality of Life Inventory was administered to 375 children and adolescents and 386 parental caregivers. Medical information was obtained from the charts. The socio-demographic information was provided by the patients and caregivers.

Results

Greater disease severity, low school attendance, current cardiac medication, current parental employment, uncertain or limited prognosis, history of connection to a heart–lung machine, number of nights spent in a hospital, and need for treatment in a paediatric aftercare clinic independently contributed to lower health-related quality of life (self-report: R2=0.41; proxy-report: R2=0.46). High correlations between self-reports and parent-proxy reports indicated concordance regarding the evaluation of a child’s health-related quality of life.

Conclusions

Beyond medical treatment, integration into school is important to increase health-related quality of life in children and adolescents surviving with chronic heart disease. Regular screening of health-related quality of life is recommended to identify patients with special needs.

Keywords

Chronic paediatric heart diseasehealth-related quality of lifepredictive factorsself-report and parent-proxy report
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 8 , October 2017 , pp. 1455 - 1464
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Copyright
© Cambridge University Press 2017 

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