How COVID-19 pandemic changed our management strategies for amyotrophic lateral sclerosis (ALS) patients: Egyptian study

Hebatallah R Rashed

doi:10.1186/s41983-021-00331-2

Abstract

BackgroundThere are several studies that have discussed the efficacy of telemedicine with amyotrophic lateral sclerosis (ALS) patients; however, this approach is still preliminary in Egypt and in North Africa. The objective of the current study is to discuss current experience with telemedicine in monitoring patients in the specialized ALS clinic in Egypt. Efficacy of Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) in monitoring disease progression remotely will be discussed.ResultsThis is a prospective study. Forty-three ALS patients were included in this study in the period between July 1, 2020, and February 6, 2021. Fifty-three telemedicine encounters and 13 post-telemedicine office visits were available. None of the participating patients had COVID-19 infection. Eight patients showed decline in ALSFRS score. ALSFRS-R score reported during telemedicine encounters was confirmed during office visits. Three bulbar onset ALS patients had gastrostomy, and 2 bulbar onset ALS patients had Botox injection for drooling. All eight patients with declining ALSFRS-R were maintained on non-invasive ventilation (NIV) based on their symptoms.ConclusionThis is the first study discussing telemedicine in the field of ALS in Egypt and North Africa. ALSFRS-R showed feasibility and reliability in detecting disease progression remotely.

Highlights

There are several studies that have discussed the efficacy of telemedicine with amyotrophic lateral sclerosis (ALS) patients; this approach is still preliminary in Egypt and in North Africa
The following items have been evaluated with patients or their caregivers: Revised ALS Functional Rating Scale (ALSFRS-R) which has been validated in Arabic in previous study [5] to determine disease progression, intercurrent events to identify significant changes including depressive symptoms, possible signs and symptoms of COVID-19 infection, and compliance to physiotherapy
A total of 53 telemedicine encounters were done with patients or/and their caregivers, followed by 13 office encounters (8 patients whom have shown decline in ALSFRS-R and 5 stable patients)

Summary

Introduction

There are several studies that have discussed the efficacy of telemedicine with amyotrophic lateral sclerosis (ALS) patients; this approach is still preliminary in Egypt and in North Africa. The objective of the current study is to discuss current experience with telemedicine in monitoring patients in the specialized ALS clinic in Egypt. Several studies have discussed this approach as an alternative tool to monitor ALS patients [3, 4]; this tool is not well developed and is still preliminary in Egypt as well as in other countries in North Africa. I will discuss the efficacy of Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) in monitoring disease progression remotely This will be done by comparing scores of ALSFRS-Rs during telemedicine encounters to their pre-telemedicine and post-telemedicine office visits

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Conclusion