Abstract: TH-PO1137
Impact of the COVID-19 Pandemic on Health Care for People with Rare Diseases in Germany (SCOPE-RD)
Session Information
- COVID-19
October 24, 2024 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Coronavirus (COVID-19)
- 000 Coronavirus (COVID-19)
Authors
- Völkel, Lukas, Medizinische Hochschule Hannover, Hannover, Niedersachsen, Germany
- Fahrenschon, Lucas R.D., Universitatsklinikum Aachen, Aachen, Nordrhein-Westfalen, Germany
- Fleck, Julia, Universitatsklinikum Aachen, Aachen, Nordrhein-Westfalen, Germany
- Mücke, Martin, Universitatsklinikum Aachen, Aachen, Nordrhein-Westfalen, Germany
- May, Melanie, Kyowa Kirin Niederlassung Deutschland, Dusseldorf, Nordrhein-Westfalen, Germany
- Zech, Immo, Kyowa Kirin Niederlassung Deutschland, Dusseldorf, Nordrhein-Westfalen, Germany
- Wagner, Annette D., Medizinische Hochschule Hannover, Hannover, Niedersachsen, Germany
Background
The Covid-19 pandemic has profoundly impacted healthcare worldwide, affecting vulnerable groups such as patients with rare diseases.This study aims to analyze the influence of the Covid-19 pandemic on the healthcare of patients with rare diseases in Germany.
Methods
In order to assess the impact of the pandemic on people with rare diseases in Germany, a retrospective cross-sectional study was conducted using performance data from the statutory health insurance (SHI). The study was conducted in a stepwise approach, comprising 1)a systematic literature review, 2)expert discussions, 3)feasibility analyses and 4)a main analysis. The anonymized SHI claims data set with information on around 9 million people insured was used in this study. Observation period was 2017 to 2022. All 16 indications to be analysed were compared with each other in terms of successful annual diagnoses and other key figures collected. The dataset provided information on feasibility, demographics, work ability, healthcare resource utilisation, burden of disease, top 50 outpatient-, inpatient-, DRG-, OPS-, EBM- and ATC-codes and costs incurred.
Results
The sample drawn from the database contains almost 5 million individuals. In total 14,912 patients were identified within six years with an average age of 59.9. Patient numbers increased over time, but showed a decline in 2020 (2%). 10 of 16 diseases showed less documented patients compared to 2019. The annual diagnoses of all summarised indications showed an increasing trend. The absolute number of diagnoses only fell between 2019 and 2020, before rising sharply again in 2021. The annual mortality rates were between 5.6 and 7.1 per cent. An increase of one percentage point from 2020 was observable. Total patient counts and prevalence rates could be a hint to underline the assumption that less cases were identified due to the pandemic situation and less contacts of healthcare providers. In 7 subgroups the prevalence rates were in ranges as expected, in 5 subgroups the prevalence rates were over- or underestimated.
Conclusion
This study focuses on methodology's complexity and provides insights into the epidemiology and patient characteristics of 16 rare diseases.Initial results indicate that these vulnerable groups were significantly affected by the Covid-19 pandemic.
Funding
- Commercial Support – Kyowa Kirin GmbH