Care situation and needs of young people with post-viral symptom complexes: Status quo analysis and development of a care concept (KidsCarePVS)

Project description

After COVID-19, but also after other viral diseases, persistent health problems can occur. These are more broadly referred to by experts as a post-viral symptom complex (PVS) and can include post-COVID and ME/CFS. The symptoms are diverse and variable. These include, among others, pronounced exhaustion, muscle pain and neurocognitive problems. The symptoms persist for a few weeks to months and even years. Little is known about the care situation of children, adolescents and young adults with PVS in Germany.

The aim of the KidsCarePVS project is to describe the national and regional care situation for children, adolescents and young adults and the requirements for their care. The basis for this is information on young people within the range from birth to the age of 20. Information is obtained from statutory health insurance companies, medically reported cases of PVS and a nationwide mapping of PVS contact points. In interviews, treating specialists provide information about their everyday experiences in treatment practice and their expectations of those affected by PVS and their families. Those affected and relatives are also asked about their view of the care services and their satisfaction with them. Data analysis is primarily descriptive and implemented through content-based analysis of the interviews. Based on the results, innovative proposals for a patient-oriented, needs-based care concept are to be formulated together with those affected (young people, relatives) and care actors.

Within KidsCarePVS, six sub-projects are dedicated to a broad, descriptive collection of synergistic data and perspectives in the sense of a status quo analysis, a comprehensive participatory synthesis of results and the development of innovative strategies to cover gaps in care. The project consortium is characterised by cross-sectoral and cross-disciplinary thematic and methodological expertise. The project is expected to produce evidence-based proposals for innovative guidelines and care algorithms that improve the orientation of young people affected and their carers, contribute to the safety of those affected, enable needs-based adaptation of care processes and structures, pave the way for fair care and appropriate legal bases for care, and sustainably guarantee the quality and cost-effectiveness of care within statutory health insurance funds. The project will be funded for three years with a total of around 1.9 million euros.

(Description adapted from project website: see link above)