Diagnostic latency in ME/CFS and post-COVID: causes, consequences and potential for improvement – ​​a mixed methods study (DiaMECO)

Project description

Many people infected with SARS-CoV-2 are affected by post-COVID, even after reinfection and after vaccination. The symptoms of the disease can affect the nervous system, heart, lungs and immune system, among others; typical symptoms are severe, persistent weakness and rapid exhaustion (fatigue), difficulty concentrating, reduced exertion capacity or pain. An estimated ten to twenty percent of those affected show all the signs of ME/CFS. ME/CFS and post-COVID are often diagnosed only after months or years or numerous visits to the doctor. This prolongs the period of uncertainty for those affected and carries the risk of incorrect or inadequate care.

The aim of the DiaMECO project team is to identify factors that promote or hinder early diagnosis of ME/CFS or post-COVID and to derive potential measures. It is also being investigated whether the delayed diagnosis may lead to under-, over- or incorrect care of those affected. To this end, the project team, whose members come from different medical disciplines, is investigating the care pathways and care patterns of the patients. In addition, the team is analysing care data from statutory health insurance companies (GKV) with regard to diagnostics and care patterns. From the data collected, the researchers derive recommendations for action and necessary measures that can be used to reduce delayed diagnoses.

In phase 1 (qualitative interviews with approx n=60 patients/relatives), it is determined which care patterns occur and are relevant for the diagnosis and what consequences an (early) diagnosis has. In phase 2a (quantitative survey, n=520 patients/relatives) and phase 2b (GKV routine data, DAK-G date, for the years 2020-2024, approx n=2.9 million), the frequency and temporal development of these care patterns and their connection with diagnostic latency and patient characteristics are analysed. In phase 3, in an expert workshop with the participation of people affected, measures to reduce diagnostic latency are derived and prioritised based on the results.

If successful, the recommendations for action developed under the project will enable a correct diagnosis of post-COVID to be made more quickly and thus enable early symptom-oriented treatment and support for those affected. In addition, unnecessary diagnostic measures and misdirected therapies can be reduced and doctors from different disciplines can be involved in a targeted manner. The project will be funded for three years with a total of around 1.1 million euros.

(Description adapted from project website: see link above)