Impact of the COVID-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study.
Orphanet J Rare Dis
; 17(1): 430, 2022 12 09.
Article
in English
| MEDLINE | ID: covidwho-2162398
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 available 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.RESULTS:
In this longitudinal retrospective 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. Compared to 2019, rare diseases (RD) care activities showed a decrease in 2020 (- 12%) which occurred mostly during the first lockdown (- 45%) but did not catch up completely. This decrease was mainly in face-to-face care activities. Telehealth activities showed a 9-fold increase during the first lockdown and was able to cover for one third of the decrease in RD activities. Finally, the total number of patients receiving care was lower in 2020(- 9%) with a drastic decrease of cases with newly confirmed diagnosis (- 47%).CONCLUSION:
Although telehealth was quickly introduced during the COVID-19 pandemic, RUD patient care was strongly affected in France with a decline in the number of patients treated and new patients recruited. This is likely to result in delays in patient diagnosis and care over the next few years.Keywords
Full text:
Available
Collection:
International databases
Database:
MEDLINE
Main subject:
Telemedicine
/
Undiagnosed Diseases
/
COVID-19
Type of study:
Experimental Studies
/
Observational study
/
Prognostic study
Limits:
Adult
/
Child
/
Humans
Country/Region as subject:
Europa
Language:
English
Journal:
Orphanet J Rare Dis
Journal subject:
Medicine
Year:
2022
Document Type:
Article
Affiliation country:
S13023-022-02580-7
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