Incidence of amyotrophic lateral sclerosis before and during the COVID-19 pandemic: evidence from an 8-year population-based study in Central Italy based on healthcare utilization databases

Abstract

Background

Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disorder with a high multidimensional burden, with an obscure etiopathogenesis.

Methods

We designed a longitudinal, population-based study of people residing in Central Italy (Marche Region) who were beneficiaries of the National Health System. People with an unprecedented ALS hospitalization (335.20 ICD-9 CM) or tagged with an ALS exemption between 2014 and 2021 were considered incident cases. ALS cases residing in the region for <3 years or with an active ALS exemption or hospitalized for ALS before 2014 were excluded. We used secondary sources to identify new ALS diagnoses. The regional referral center for ALS’s database was used to test the accuracy of secondary sources in detecting cases. ALS mean incidence was compared to that reported in similar studies conducted in Italy. The incidence rate trend adjusted by sex and age was evaluated using the Poisson regression model.

Results

We detected 425 new ALS cases (median age: 70y) in the 2014–2021 period, with a mean incidence of 3.5:100,000 py (95%CI: 3.2–3.8; M:F = 1.2), similar to that reported in similar studies conducted in Italy. No trend was observed during 2014–2019. After including 2020–2021 in the model, we observed a mean decrease in incidence of 5.8% (95% CI 2.0%; 9.5%, p = 0.003).

Conclusion

We show a decrease in the incidence rate of ALS in Marche, during the 2014–2021 period, as a possible outcome of a delayed neurological assessment and diagnosis during the pandemic. An ad hoc developed identification algorithm, based on healthcare utilization databases, is a valuable tool to assess the health impact of global contingencies.

Keywords:

• Amyotrophic lateral sclerosis
• neuroepidemiology
• environment

Author contributions

F.M.S, R.G and M.G.C. contributed to the conception, study design, drafting, and gave the final approval for this version to be published. M.P. and F.C. contributed to the interpretation of data, critically revised the manuscript and discussion. R.G. was responsible for the integrity of the data and accuracy of the data analysis. A.F. performed the statistical analysis and drafting the manuscript. All authors have read and agreed to the published version of the manuscript.

Institutional review board statement

Ethical review and approval were waived for this study. We did not mention ethical safeguards simply because not pertinent in our study.

Informed consent statement

According to the rules from the Italian Medicines Agency (available at: http://www.agenziafarmaco.gov.it/sites/default/files/det 20marzo2008.pdf) retrospective studies without direct contact with patients do not need a written consent to process personal data when they are used for research aims.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Data availability statement

The full data that support the findings of this study are not publicly available due to their sensitivity (e.g. the municipality of residence), which could possibly compromise the privacy of research participants. They remain available upon appropriate request from the authors (R.G., M.P., F.C.).