Care coordination in children and adolescents living with a rare disease - influencing factors and concept review

• Applicant: Professorin Dr. Laura Inhestern
• Subject Area: Public Health, Healthcare Research, Social and Occupational Medicine
• Term: since 2023
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 533558891

About 6-8% of the population are affected by a rare disease. A disease is considered rare if 5 people or less of 10.000 people are affected. The majority of rare diseases is caused genetically and first symptoms occur in (early) childhood. Care coordina-tion is considered as one major challenge for parents and caregivers of children with rare diseases. It can cause high burden and can impede use of health care services. In order to provide a basis for interventions on care coordination, a research group from Great Britain developed a taxonomy for care coordination in people with rare diseases. The aim of the proposed study is to investigate central persons, problems, components and influencing factors of care coordi-nation in children and adolescents with rare diseases. Additionally, the proposed taxonomy on care coordination will be adapted according to the findings as it is assumed that some specifics regarding the pediatric setting relevant. The research questions of the proposed study will be investigated following a qualitative approach using semi structured inter-views with parents and adolescents (each n=8-10) and focus groups with health care providers and service providers from relevant sectors (3 focus groups with n=6-8 participants each). Analytic strategy will follow the thematic approach of Braun and Clarke. Findings will be integrated and the taxonomy will be adapted according to the results. Additionally, potential focus and outcome of the interventions will be identified.The proposed study allows for a systematic approach to capture care coordination in children and adolescents with rare dis-eases. The adapted taxonomy provides a basis to adapt and optimize existing practices of care coordination and to develop and evaluate new interventions.

• DFG Programme: Research Grants