Mapping Long COVID across the EU: definitions, guidelines and surveillance systems in EU Member States

Abstract A mapping study had been conducted to provide insight into 1) Long COVID definitions, 2) guidelines and intelligence on diagnosis and treatment, and 3) surveillance systems, as used/implemented in EU Member States plus Iceland, Norway, the United States, Canada, New Zealand, and Australia. Findings show that most Long COVID definitions align with WHO or NICE criteria, although there are also notable differences between definitions. The study also found Long COVID guidelines for diagnosis and treatment in 21 out of 34 selected countries. Common elements include advocating a multidisciplinary approach, a central role for primary care, and the focus on rehabilitation. Some guidelines include recommendations for referral to specialised care and follow-up procedures. Guidelines also differ in their target audience and in terms of their focus specific symptoms or organ systems that are affected by Long COVID. When it comes to Long COVID surveillance systems only a limited number of (nine) registries were found. Five of the Long COVID registries are based on self-registration. As limited information is available for most registries, a detailed understanding of their structures and goals in comparison to others is hindered. In conclusion, the study underlines the interconnectedness of Long COVID definitions, the development of guidelines, and surveillance systems. Given the variability in definitions and the voluntary entry of patients into the existing registries, there are no good estimates yet of the total numbers of patients and the severity of their disease in EU Member States. Linking information from cohort studies and clinical trials may be necessary to provide the full picture of the burden of disease of Long COVID. Still, preliminary estimates indicate that a significant proportion of those infected with COVID-19 experience long lasting symptoms, leading to impaired quality of life, also placing a significant burden on national health systems in the future.