Abstract

During the COVID-19 pandemic and the related lockdowns, outpatient follow-up visits for patients with chronic neurological diseases have been suspended. Managing people affected by amyotrophic lateral sclerosis (ALS) has become highly complicated, leaving patients without the standard multidisciplinary follow-up. This study aimed to analyze the impact of the COVID-19 lockdown on ALS disease progression. We compared the clinical data and progression in the first year following diagnosis for patients who received ALS diagnosis during 2020 (G20, N = 34), comparing it with a group of diagnosed in 2018 (G18, N = 31). Both groups received a comparable multidisciplinary model of care in our Tertiary Expert ALS Centre, Novara, Italy. The monthly rate of ALSFRS-R decline during the lockdown was significantly increased in G20 compared to G18 (1.52 ± 2.69 vs. 0.76 ± 0.56; p-value: 0.005). In G20, 47% required non-invasive ventilation (vs. 32% of G18). Similarly, in G20, 35% of patients died vs. 19% of patients in G18 (p-value: 0.01). All results were corrected for gender, age, site of onset, and diagnostic delay. Several factors can be implicated in making ALS more severe, with a faster progression, such as reduced medical evaluations and the possibility of therapeutic changes, social isolation, and rehabilitation therapy suspension.

Highlights

  • This study aimed to retrospectively describe the overall impact of the lockdown on amyotrophic lateral sclerosis (ALS) progression by analyzing patients who received a diagnosis of ALS during 2020 and investigating the possible changes of functional status, disease severity, and the required interventions, comparing the 2020 data with a control group of ALS patients who received the diagnosis in 2018

  • For 2020, if the patient had scheduled a visit during the pandemic peak period, this was postponed and patients were contacted by telemedicine

  • We did not observe significant differences in ALSFRS-R, FVC%, and body mass index (BMI) at baseline, though a lower score in each of these was found in Group 2020 (G20) at diagnosis (Table 1)

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Summary

Introduction

“The COVID-19 Lockdown”, the mandatory isolation related to the ongoing pandemic by SARS-CoV-2 infection, has been primarily adopted by the Italian government since

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