Article
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in young people aged 6 to 27 years: First estimates of incidence rates in 2020 to 2022 for Germany – a routine data analysis
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Authors
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Marielle Wirth
- Department of General Pediatrics, Neonatology and Pediatric Cardiology, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany
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Burkhard Haastert
- medistatistica, Wuppertal, Wuppertal, Germany; Institute for Health Services Research and Health Economics, Centre for Health and Society, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany
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Ute Linnenkamp
- Institute for Health Services Research and Health Economics, German Diabetes Center, Leibniz Center for Diabetes Research at Heinrich Heine University Düsseldorf, Düsseldorf, Germany; Institute for Health Services Research and Health Economics, Centre for Health and Society, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany
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Silke Andrich
- Institute for Health Services Research and Health Economics, German Diabetes Center, Leibniz Center for Diabetes Research at Heinrich Heine University Düsseldorf, Düsseldorf, Germany; Institute for Health Services Research and Health Economics, Centre for Health and Society, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany
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Uta Behrends
- Munich Chronic Fatigue Center for Young People (MCFC), Children's Hospital, Pediatrics, TUM School of Medicine and Health, Technical University of Munich, München, Germany; Partner Site Munich, German Center for Infection Research (DZIF), München, Germany
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Freia De Bock
- Department of General Pediatrics, Neonatology and Pediatric Cardiology, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany
| Published: | September 6, 2024 |
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Outline
Text
Introduction: ME/CFS is a severe and complex condition, which leads to delayed official diagnosis and a long period of suffering for those affected [1], [2]. The international incidence of pediatric ME/CFS is estimated at 0.1-0.5% [3], [4]. However, currently no estimates based on health insurance data are available for Germany. The aim is to use inpatient and outpatient routine data of the Techniker Krankenkasse (TK) to estimate the annual incidence rates from 2020 to 2022 of ME/CFS in young people aged 6-27 years in Germany.
Methods: ME/CFS will be identified by ICD-10 code G93.3. Incidence rates (IR) will be estimated assuming Poisson/negative binomial distribution per 10,000 person-years and confidence intervals (95% CI). Associations of calendar year, age, sex and federal state with IR will be examined using Multiple Poisson/Negative Binomial regression models.
Results: We will provide first estimates of ME/CFS incidence rates based on health insurance data in young people in Germany for 2020 to 2022 stratified by calendar year, age, sex and federal state.
Conclusion: The incidence rates will allow us to discuss possible associations with the COVID-19 pandemic as well as the awareness and course of diagnosis of ME/CFS in Germany. As COVID-19 can be a trigger of postviral fatigue syndrome such as ME/CFS, the rates could show possible associations with the pandemic, or may represent underdiagnosis prior to the pandemic which improves with rising professional awareness of the diagnosis in the course of the pandemic. Possible differences in rates across the federal states could mirror an unevenly distributed awareness of the disease among healthcare professionals or unevenly distribute health care resources. However, as routine data only capture officially coded diagnoses without knowledge about the place of diagnosis and the TK accounts for only approximately 15% of those with statutory health insurance nationwide, future studies could provide more evidence on the incidence rates and increase generalizability. Additionally, the impact of the pandemic on ME/CFS has to be further determined.
The authors declare that they have no competing interests.
The authors declare that a positive ethics committee vote has been obtained.
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