Post-acute viral infection syndromes in Berlin: Structured cross-sectoral and interdisciplinary care (PAIS Berlin)

Project description

Even after a mild viral infection, patients who have not previously been ill can develop so-called post-acute infection syndromes (PAIS). Three months after an infection, fatigue, reduced exhaustion tolerance, memory problems or breathing difficulties usually occur and severely restrict the everyday life of those affected. Overall more than 50 symptoms have already been identified. Up to ten percent of those who are initially mildly ill with an infectious disease are affected. Current estimates assume that around 120,000 people in Berlin are living with PAIS.

The project team is investigating the interdisciplinary care situation of those affected by PAIS in Berlin. First, previous diagnostic findings of patients are analysed, before their care will be recorded for a period of twelve months. In addition, interviews are conducted with those affected about their experiences. As a second step, the researchers are examining reports on applications from those affected, for example for recognition of severe disability. As a third step, the investigators plan to interview caregivers and patient organisations. Using the results from these three sources of information, they can identify the care provided by various specialists, as well as current treatment pathways, patterns of utilisation, and indicators of existing needs. On this basis, the researchers then want to develop a concept that optimises the care pathways for people living with PAIS.

The project will be funded for three years with a total of around 2.1 million euros.

If successful, the project will contribute to a better understanding of PAIS and its progression and identify possible gaps in care or over-provision. The recommendations on diagnostic and therapeutic procedures as well as needs-based care options serve to optimize outpatient care, in which various medical disciplines work together.

The PAIS Berlin study examines the interdisciplinary care situation of those affected by post-acute infection syndrome (PAIS) in Berlin, developing treatment pathways and utilization patterns based on the experiences of patients and caregivers. As a model for PAIS, patients who are affected by post-Covid-19 syndrome (PCS) and who have persistent, everyday-limiting symptoms more than three months after an illness with SARS-CoV-2 or other viral diseases are examined. All those affected who request an appointment at a special outpatient clinic of the Charité Post-Covid Network (PCN) are invited. In the mixed-methods approach, data from patients and caregivers on their symptoms, experiences and expectations are collected. In addition, other available documents are taken into account. The analysis focuses on the description and evaluation of the current interdisciplinary care situation as well as treatment pathways and utilization patterns. Furthermore, indicators of system responsiveness and resilience are described. The basis for structuring, organizing and establishing sustainable outpatient care is discussed in a participatory manner with the actors involved. A concept of structured interdisciplinary care is to be developed together, which ensures patient-friendly, effective, resource-saving, high-quality and resilient regional care at PAIS across sectors and actors.

Description adapted from project website: see link above.