Improving care for children with severe neurological diseases - innovation fund supports "KoCoN" project with 8.1 million euros

Researchers, healthcare providers and health insurance companies are pulling together to offer optimally structured, more comprehensive and sustainable treatment for children with complex chronic neurological diseases: The new research project "IT-supported cross-sectoral patient pathways for the care of children with COmplex ChrOnic Neurological Diseases" (KoCoN) aims to rapidly reduce disease symptoms and improve the quality of life of those affected and their families - without increasing costs.

Children with complex chronic neurological diseases are often dependent on medical assistance, including ventilation. "The care of these children is extremely demanding and costly," says neuropaediatrician Prof Kevin Rostasy from the Vestische Kinder- und Jugendklinik - Witten/Herdecke University. "Germany also lacks nationwide structures for interdisciplinary and multi-professional care that take into account the comprehensive needs of young people and their families," adds his co-project manager and colleague, paediatric palliative care specialist Prof. Dr Boris Zernikow.

Multi-professional team researches the complex new forms of care

This is where the KoCoN project comes in: An IT-supported patient pathway is intended to improve care for patients, their parents and inpatient and outpatient care providers. "Researching such complex new forms of care is a major challenge and can only succeed in a multi-professional team," says Dr Julia Wager from the PedScience research institute. PedScience is responsible for evaluation planning and implementation. Among other things, it is investigating how the new KoCoN form of care affects quality of life, disease symptom burden, family empowerment and quality of care. "We will also record the health costs of KoCoN using health insurance data and self-reporting by families," says Prof Dr Dirk Sauerland from the Chair of Institutional Economics and Health Policy at Witten/Herdecke University.

The project is being funded for three years with 8.1 million euros from the Innovation Fund. Other consortium partners are the health insurance companies AOKs in Baden-Württemberg, Bavaria, Lower Saxony, Saxony and Thuringia as well as Barmer and Techniker Krankenkasse; clinical partners are the paediatric hospital Auf der Bult in Hanover, the Olga Hospital in Stuttgart and the university paediatric hospitals in Augsburg, Bielefeld and Dresden. The patients and families are represented by Kindernetzwerk e. V.