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Review
. 2020 Jun;61(6):682-691.
doi: 10.1002/mus.26838. Epub 2020 Apr 16.

The Use of Telehealth to Enhance Care in ALS and other Neuromuscular Disorders

Anne Haulman  1 , Andrew Geronimo  2 , Amit Chahwala  3 , Zachary Simmons  1
Affiliations
Review

The Use of Telehealth to Enhance Care in ALS and other Neuromuscular Disorders

Anne Haulman et al. Muscle Nerve. 2020 Jun.

Abstract

Telehealth has the potential to improve the efficiency of healthcare while reducing the burden on patients and caregivers. Encounters can be synchronous or asynchronous. When used for care of those with amyotrophic lateral sclerosis (ALS) by individual health care providers or by a multidisciplinary team, synchronous telehealth is feasible, acceptable, may produce outcomes comparable to those of in-person care, and is cost effective. Individuals with ALS who use telehealth tend to have lower physical and respiratory function and to live farther from an ALS clinic than those who exclusively attend in-person clinic visits. Asynchronous telehealth can be used as a substitute full multidisciplinary visits, or for remote monitoring of pulmonary function, gait/falls, and speech. Barriers to implementing telehealth on a wider scale include disparities in access to technology and challenges surrounding medical licensure and billing, but these are being addressed.

Keywords: ALS; mHealth; mobile health; telehealth; telemedicine.

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Conflict of interest statement

Disclosures of Conflicts of Interest: Zachary Simmons has received consulting fees from Biogen and Cytokinetics, research support from Biogen, Biohaven, and Cytokinetics, and stipends from Wiley, Inc. None of the other authors has any conflict of interest to disclose.

Figures

Figure 1.
Figure 1.. All telehealth visits, October 2018 through November 2019.
(A) Number of visits per patient. (B) Length of each visit. Numbers within each pie section indicate number of patients and percentage of total telehealth visits.
Figure 2.
Figure 2.
Number of telehealth visits per month
Figure 3.
Figure 3.. Length of multidisciplinary telehealth visits and of individual healthcare provider telehealth visits.
(A) Visits involving the ALS multidisciplinary team. (B) 1-on-1 visits with individual healthcare providers. Numbers within each pie section indicate number of patients and percentage of total telehealth visits.
Figure 4.
Figure 4.. Distance of patients from ALS clinic.
(A) Patients seen via telehealth. (B) Patients seen in-person.
Figure 5.
Figure 5.. Scatterplots for standard and remote forced vital capacity (FVC, left) and maximal inspiratory pressure (MIP, right) assessments.
A solid line of best fit and associated correlation coefficient are shown, as well as dashed line showing the ideal fit. Labels in four quadrants show the relative proportions of true positive (TP), false positive (FP), true negative (TN), and false negative (FN) events based on an FVC and MIP thresholds of 50% and −60 cm water. From Geronimo A, Simmons Z. Evaluation of remote pulmonary function testing in motor neuron disease. Amyotroph Lateral Scler Frontotemporal Degener 2019; 20:348–355, reprinted by permission of the publisher (Taylor & Francis Ltd, http://www.tandfonline.com).
Figure 6.
Figure 6.. Rate of change over time of forced vital capacity as calculated from the Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database.
Patients can be stratified into slow, moderate, and fast progressors, shown below as the mean and standard deviation for each group.
Figure 7.
Figure 7.. Relationship between walking speed, function, and need for assistive devices.
Median and interquartile ranges are shown for walking speed for subjects stratified by the walking subscale of the ALS Functional Rating Scale – Revised (FRSw, left) and by walking assistance (right). *significant differences between items by pairwise Tukey test following ANOVA.
See this image and copyright information in PMC

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