Online Quality of Life Monitoring for the optimization of care programs for congenital heart disease in children and adolescents
congenital heart disease; health-related Quality of Life; Online-Monitoring, patient-reported outcomes, cardiology, early screening
Aachen University of Technology
Department of Paediatric Cardiology
Prof. Dr. med. Hedwig Hövels-Gürich
Pauwelsstraße 30, 52074 Aachen
Heart and Diabetes Center North Rhine-Westphalia, University Hospital of the Ruhr University of
Bochum, Pediatric Heart Center and Center for Congenital Heart Defects
Matthias Lamers, Georgstraße 11, 32545 Bad Oeynhausen
Practice of peadiatric cardiology Aachen
Dr. med. Dimitrios Gkalpakiotis , Vaalser Straße 516, 52074 Aachen
University of Bonn
Division of Paediatric Cardiology, Children’s Hospital
PD Dr. Ulrike Herberg , Adenauerallee 119, 53113 Bonn
Prof. Dr. med. Eberhard Mühler, Hospitalstraße 44, 52353 Düren
Heart Center, University Hospital of Cologne, Department of Paediatric Cardiology
Dr. med. Verena Strunz, Kerpener Straße 62, 50937 Köln
German Association of Children with Heart Disease (BVHK)
Nock, Hermine (Director), Kasinostraße 66, 52066 Aachen
01.07.2018 – 30.06.2022
Description of the Project
Congenital heart diseases occur in approximately 1% of all newborns. At present, more than 90% of those affected survive due to improved treatment options. The growing number of affected people in Germany comprises about 300.000 people. They show a highly increased risk of developmental and behavioral disorders and constraints concerning their health-related Quality of Life. Thus, special need for rehabilitation is given, which, often remains undetected or is detected too late within conventional care. Therefore this study aims at evaluating the efficacy of an E-Health method (LQMAPP) in order to improve the early detection of the need for rehabilitation.
As part of this project a screening- and monitoring program will be established in several specialized pediatric cardiology clinics. On the basis of the data submitted by computer-administrated questionnaires, indications regarding constraints of the health-related Quality of Life and behavioral
or developmental problems will be acquired. Positive screening results will be used by the physician for further treatment in order to clarify and initiate precisely fitted support and rehabilitation measures. A randomized-controlled intervention study (RCT) will be used to test whether the
screening program will effect an improvement of early detections compared to previous conventional treatments.
The study will be conducted as a randomized controlled two-arm study with parallel groups in order to achieve optimal evidence concerning the main goal: the evaluation of a significant improvement in early screening of rehabilitation needs for pediatric patients with heart diseases. Secondary outcomes are: health-related Quality of Life, behavioral abnormalities, anxiety and depression of the parents, practicability and cost-benefit ratio.
Publications / References
Goldbeck L et al. Lebensqualität in Familien mit einem herzkranken Kind. Kindheit und Entwicklung. 2005:14 (2), 79-86.
Goldbeck L et al. Quality of life in families of children with congenital heart disease. Qual.Life Res. 2005:14, 1915-1924.
Goldbeck L et al. The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease. Cardiol.Young. 2006: 6, 67-75.
Snyder CF et al. Patient Viewpoint: a website for patient-reported outcomes assessment. Qual life Res. 2009:18, 793-800.
De Wit M et al. Monitoring and Discussing Health-Related Quality of Life in Adolescents With Type 1 Diabetes Improve Psychosocial Well-Being. Diabetes Care. 2008:31, 1521-1526.
Engelen V. Monitoring Quality of Life in Peadiatric Oncolocy Practice. 2011.
Niemitz M et al. The development and validation of a health-related quality of life questionnaire for pre-school children with a chronic heart disease. Qual Life Res. 2013:22, 2877-2888.
Niemitz, M et al. Predictors of health-related quality of life in children with chronic heart disease. Cardiol.Young. 2017:27, 1455-1464.
German Aerospace Center (DLR) Project Management Agency
Innovation Committee of Federal Joint Committee (G-BA)