LQM Heart Children

Heart disease; health-related quality of life; online monitoring, cardiology, early screening; patient-reported outcomes

University Hospital RWTH Aachen
Clinic for Paediatric Cardiology, Centre for Congenital Heart Defects
Prof. Dr. med. Hedwig Hövels-Gürich
Pauwelsstraße 30, 52074 Aachen

Heart and Diabetes Centre NRW, University Hospital of the Ruhr University Bochum
Children's Heart Centre, Centre for Congenital Heart Defects
Matthias Lamers
Georgstraße 11, 32545 Bad Oeynhausen

Paediatric Cardiology Practice Aachen
Dr med. Dimitrios Gkalpakiotis
Vaalser Straße 516, 52074 Aachen

University Hospital Bonn
Department of Paediatric Cardiology
PD Dr Ulrike Herberg
Adenauerallee 119, 53113 Bonn

Sankt Marien-Hospital
Paediatric Cardiology
Prof. Dr med. Eberhard Mühler
Hospitalstraße 44, 52353 Düren

University Hospital Cologne, Heart Centre Cologne
Clinic and Polyclinic for Paediatric Cardiology - Heart Centre
Dr Verena Strunz (specialist in paediatrics and adolescent medicine)
Kerpener Straße 62, 50937 Cologne

Bundesverband Herzkranke Kinder e.V. (BVHK)
Nock, Hermine (Function: Managing Director)
Kasinostraße 66, 52066 Aachen

01.07.2018 - 30.06.2022

Congenital heart disease occurs in approximately 1% of all newborns. As a result of better treatment options, more than 90% of those affected currently survive. The growing group of those affected in Germany comprises around 300,000 people. They have a greatly increased risk of developmental and behavioural disorders and restrictions in their health-related quality of life. This results in a particular need for rehabilitation, which remains unrecognised or is recognised too late in the context of the usual care provided to date.

This research project therefore aims to investigate the effectiveness of an e-health method to improve the early recognition of rehabilitation needs. As part of the project, a screening and monitoring programme will be established in several specialist paediatric cardiology outpatient clinics and practices using computer-administered questionnaires, which will be used to record indications of restrictions in health-related quality of life, behavioural or developmental abnormalities on the basis of information provided by patients or their parents. Positive screening results are to be used by the paediatrician or family doctor providing further treatment for further clarification and initiation of appropriate support and rehabilitation measures. A randomised controlled intervention study (RCT) will examine whether the screening programme leads to an improvement in early detection compared to the usual care.

The project will be conducted using a randomised-controlled, two-arm study design with parallel groups in order to achieve the best possible evidence base with regard to the main research question of the study, which is to evaluate an improvement in the early detection of the need for rehabilitation in paediatric patients with heart disease. Secondary target parameters are health-related quality of life, behavioural abnormalities, anxiety and depression of parents, practicability and the cost-benefit balance.