Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Observational Study
. 2021 May;143(5):489-496.
doi: 10.1111/ane.13373. Epub 2020 Nov 24.

Telehealth approach for amyotrophic lateral sclerosis patients: the experience during COVID-19 pandemic

Fabiola De Marchi  1 , Maria Francesca Sarnelli  1 , Marcella Serioli  2 , Ilaria De Marchi  1 , Ermes Zani  3 , Nicola Bottone  3 , Serena Ambrosini  4 , Raffaella Garone  5 , Roberto Cantello  1 , Letizia Mazzini  1 ; CANPALS Study Group
Collaborators, Affiliations
Observational Study

Telehealth approach for amyotrophic lateral sclerosis patients: the experience during COVID-19 pandemic

Fabiola De Marchi et al. Acta Neurol Scand. 2021 May.

Abstract

Background and objective: Specialized multidisciplinary ALS care has been shown to extend survival and improve patient's and caregiver's quality of life. During the COVID-19 pandemic, the management of patients suddenly changed and telemedicine has been proven to be as effective as outpatient care. We elaborate the experience with Telemedicine of a Tertiary ALS Center from an Italian geographical area with high infectious risk during the COVID-19 pandemic.

Methods: 19 patients were evaluated in telemedicine by a multidisciplinary team including a neurologist (clinical evaluation, intercurrent events, and drug prescriptions); a dietician (diet and weight monitoring); a psychologist (psychological assessment and support); and a physiotherapist (physiotherapy treatment and device prescription). Telemedicine was performed using the online platform "IoMT Connected Care Platform (Ticuro Reply)."

Results: All patients reported a positive perception of talking face to face with healthcare professionals and were satisfied with how the team understood their problems. During video televisits, there was a change in the patient's medication regimen in 11/19; 2/19 required pneumological evaluation and started NIV; and 9/16 patients required prescription of devices. The mean monthly decline of ALSFRS-R before televisit was 0.88 (SD 1.17) and during televisit of 0.49 (SD 0.75). Bodyweight and daily caloric content remain stable. Reduction in HADS scores and stability in ALSAQ-40 were observed.

Discussion: Our study positively reproduced the multidisciplinary approach currently used with ALS patients, trying to stabilize the functional and metabolic status and improving the psychological one. Future directions include a personalized telemedicine program according to the patient's needs.

Keywords: COVID-19; amyotrophic lateral sclerosis; multidisciplinary care; telemedicine.

PubMed Disclaimer

References

REFERENCES

    1. van Es MA, Hardiman O, Chio A, et al. Amyotrophic lateral sclerosis. Lancet. 2017;390(10107):2084-2098.
    1. Hogden A, Foley G, Henderson RD, James N, Aoun SM. Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach. J Multidiscip Healthc. 2017;10:205.
    1. EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis, Andersen PM, Abrahams S, et al. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)-revised report of an EFNS task force. Eur J Neurol. 2012;19(3):360-375.
    1. Boylan K, Levine T, Lomen-Hoerth C, et al. Prospective study of cost of care at multidisciplinary ALS centers adhering to American Academy of Neurology (AAN) ALS practice parameters. Amyotroph Lateral Scler Front Degener. 2016;17(1-2):119-127.
    1. Hatcher-Martin JM, Adams JL, Anderson ER, et al. Telemedicine in neurology: telemedicine work group of the American academy of neurology update. Neurology. 2020;94(1):30-38.

Publication types

LinkOut - more resources