Mandy Niemitz1, Diana C M Gunst1, Hedwig H Hövels-Gürich2, Michael Hofbeck3, Renate Kaulitz3, Christoph Galm4, Felix Berger5, Nicole Nagdyman6, Brigitte Stiller7, Thomas Borth-Bruhns8, Ines Konzag9, Christian Balmer10, Lutz Goldbeck1. 1. 1Department of Child and Adolescent Psychiatry/Psychotherapy,University Ulm Medical Centre,Ulm,Germany. 2. 2Department of Pediatric Cardiology,University Aachen,Germany. 3. 3Department of Pediatric Cardiology,Pulmonology and Intensive Care Medicine,University Tübingen Medical Centre,Germany. 4. 4Physician, Pediatric Praxis, Biberach,Germany. 5. 5Department of Congenital Heart Diseases/Pediatric Cardiology,German Cardiology Centre Berlin,Germany. 6. 6German Cardiology Centre Munich,Munich University of Technology,Germany. 7. 7Department of Pediatrics and Adolescent Medicine,University Freiburg Medical Centre,Germany. 8. 8Sana clinic in Remscheid, (academic) teaching hospital of the University Cologne,Germany. 9. 9Pediatric Aftercare Clinic,Berlin-Brandenburg gGmbH,Bernau-Waldsiedlung,Germany. 10. 10Department of Cardiology,University Children's Hospital Zurich,Switzerland.
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.
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.
Entities:
Keywords:
Chronic paediatric heart disease; health-related quality of life; predictive factors; self-report and parent-proxy report
Authors: Gali S Kolt; Barbara R Ferdman; Jessica Y Choi; Janine Henson; Van-Trang Nguyen; Emily A Farkas; Vinicius Jds Nina; Rachel Vah Nina; Renzo O CiFuentes; William F Zeman; John E Connett; Aubyn Marath Journal: Cardiol Young Date: 2020-02 Impact factor: 1.093
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