Improving the care situation for those affected by Long COVID (LCovB)

Project description

There is currently no systematic work that describes the care situation of people diagnosed with post-COVID syndrome (PCS) and helps to understand the clinical picture in more depth. Researchers within the LCovB project seek to provide more clarity on this issue. First, they will evaluate data from people who were diagnosed with post-COVID syndrome in 2022/2023. Data will be drawn from the respective health insurance companies of those patients included in the study and mainly concerns age, gender, course of the disease, combination with other diagnoses and the care measures received. Afterwards, some of those affected are questioned about topics such as quality of life and activity, others are interviewed about their personal care processes.

Additionally, 15 patients with severe ME/CFS, who have become ill after COVID-19, are visited at home by a specialised team (doctor/assistant). The condition is assessed and recorded by reviewing the available findings, using questionnaires, examinations and blood samples for comprehensive laboratory diagnostics during the home visit, as well as discussions with the family doctor and those providing care. If necessary, inpatient neurological assessment is also organised under appropriate conditions. An individual therapy plan is drawn up, which is to be implemented step by step by the family doctor in close coordination with us. Short online surveys are carried out monthly over a period of 6 months. All in all, the project is devided into the following seven steps:

1) Routine data analysis of the diagnostic data: At the beginning of the project, diagnostic data from all insured persons with a confirmed COVID-19 disease is evaluated. This serves to obtain an overview of the extent of PCS. Using anonymised data, Charité - University Medicine Berlin will analyse whether there are similarities among those affected based on socio-demographic characteristics, such as age and gender, and on previous illnesses and comorbidities.

2) Routine data analysis of the service data: In the next step, the care histories of those affected by PCS are examined by evaluating the service data (e.g. medical services, hospital stays and rehabilitation measures). In this way, care deficits can be identified and good care examples recognized.

3) Survey of those affected: In step 3, 2.000 people insured with BKK are surveyed about their health status, quality of life and experiences with the health system. This survey provides valuable insights into individual experiences with the care system.

4) Interviews with those affected: In order to analyse the care in detail, 15 selected patients are interviewed by Charité - University Medicine Berlin in order to understand the subjective view of those affected and their individual disease progression.

5) Medical examination of seriously ill patients: A small group of seriously ill, bedridden or care-dependent patients are examined by a doctor in their own home. Based on the examination results, the treating general practitioners receive a multi-stage therapy concept, the effectiveness of which is regularly checked over the course of the course.

6) Expert panel: Step 6 is the core of the project. A panel of those affected, specialists, outpatient care workers and other experts evaluates the results and develops recommendations for action to improve care.

7) Closing event: The project results and the resulting recommendations for action for disease management and the care of those affected by PCS (and ME/CFS) will be presented publicly at the end of the project.

If successful, the recommendations will help to better adapt care processes, for example by making diagnoses more promptly, providing information on disease management and coping with everyday life, thus improving overall care.

(Description adapted from project website: see link above)