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Impact of the COVID-19 Pandemic on the Care of Rare and Undiagnosed Diseases Patients in France: A Longitudinal Population-Based Study
18 Pages Posted: 10 Jan 2022
More...Abstract
Background: Preliminary data suggest that COVID-19 pandemic has generated a switch from face-to-face to remote care for individuals with chronic diseases. However, few data are reported for rare and undiagnosed diseases (RUDs). We aimed to assess the impact of the COVID-19 pandemic on the activities of the French reference network for RUDs in 2020.
Methods: In this observational, cross-sectional study, we extracted and analyzed the data of the French national registry for RUDs collected between Jan 1, 2019 and Dec 31, 2020. We compared the annual longitudinal evolution of face-to-face and remote care activities between 2019 and 2020 focusing on adult and pediatric patients.
Findings: Compared to 2019, 2020 was marked by a decrease in rare diseases (RD) care activities (-12%) which mostly occurred during the first lockdown (-45%) but did not catch up. This decrease mostly concerned face-to-face care activities albeit a third of this decrease was compensated by telehealth activities which was multiplied by 9 during the first lockdown but decreased afterwards as in person care resumed. Finally, the total number of patients receiving care was lower in 2020(-9%) with a drastic decrease of cases with newly confirmed diagnosis (-47%).
Interpretation: Although telehealth was quickly introduced, RUD patient care was strongly affected by the COVID-19 pandemic in France with a decline in the number of patients treated and new patients included. This is likely to result in delays in patient diagnosis and care over the next few years.
Funding Information: French national research agency (INSERM) ATIP Avenir and Fondation Betten court Schueller.
Declaration of Interests: MK has no conflicts of interest to declare. LS has no conflicts of interest to declare. RN has no conflict of interest to declare. CM has no conflicts of interest to declare. AS has no conflicts of interest to declare. ASJ has no conflicts of interest to declare.
Ethics Approval Statement: This project was assessed by the scientific committee of the BNDMR as requested by data governance authorized by the French Data Protection Authority (Authorization DR-2019- 113).
Keywords: Rare diseases, COVID-19, Health policy, National health registry, National health program, Telehealth
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