The COVID-19 pandemic has imposed new challenges on diagnosing, monitoring, and caring for people with amyotrophic lateral sclerosis (ALS), from the absence of in-person visits to a lack of available equipment at hospitals.
But the expansion of telemedicine may be a way to overcome these challenges, and allow for new paradigms in ALS care and research.
These challenges and opportunities were discussed in the paper “Amyotrophic Lateral Sclerosis Care and Research in the USA During the COVID-19 Pandemic: Challenges and Opportunities,“ published in Muscle & Nerve.
Its researchers analyzed the results of a survey of 61 members of the Northeast ALS Consortium (NEALS), a group of medical institutions specialized in treating ALS. The survey was conducted in late April.
From its results, the team outlined three overarching challenges currently facing ALS care.
The first concerns making new diagnoses, and is largely due to restrictions on in-person visits. Among these institutions, 33% reported being unable to do in-person visits for new patients, and 47% could not do such visits for returning patients.
While some parts of a neurological examination can be done remotely, others — such as measuring muscle tone and tendon reflexes — cannot.
“This is likely to aggravate the already significant problem of diagnostic delay in ALS,” the researchers wrote.
A second challenge involves the difficulty in monitoring disease progression. In particular, 69% of responding sites were unable to perform spirometry, a test of lung health.
“Spirometry is one of the main ways ALS clinicians determine prognoses, and make decisions about when to offer various evidence-based ALS care options including non-invasive ventilation, invasive ventilation, feeding tubes and hospice,” the researchers wrote.
Spirometry is particularly problematic during the pandemic, because it often causes people to cough, spraying the tiny droplets through which COVID-19 spreads. As such, even at sites where in-person visits are possible, spirometry often isn’t.
Other monitoring that usually requires in-person visits, such as blood tests, is also being hindered by the ongoing pandemic.
The third challenge is that resources usually available for caring for people with ALS may not be at present. Substantial percentages of responding institutions reported difficulty in getting feeding tubes (34%), wheelchairs (23%), ventilators (10%), and providing multidisciplinary care (33%).
In addition to limiting care given, these challenges could impact ongoing ALS clinical trials. “It has largely been assumed that the baseline ALS care being provided at different sites in a multi-center trial is similar; this assumption is currently incorrect,” the researchers wrote.
Indeed, the pandemic has substantially affected ongoing ALS research — a fifth of responding institutions reported being unable to examine research participants by any means during the current pandemic.
These challenges may be overcome, at least in part, through greater use of telemedicine (medical care delivered virtually, usually via video chat).
“The rapid expansion of telemedicine represents an exciting opportunity to improve clinical care and expand access to research opportunities for many patients,” the researchers wrote.
Prior to the pandemic hitting the U.S. in earnest, only a minority of ALS-treating institutions offered telemedicine, and regulatory restrictions were often in place — for instance, limiting medical care that could be delivered virtually across state lines. COVID-19 has spurred a rapid boom in telemedicine infrastructure at many institutions, and many of these regulatory hurdles have been suspended or removed.
“Within a matter of weeks of the COVID-19 pandemic in the US, more ALS centers were offering telemedicine for established patients than were offering traditional in-clinic visits,” the researchers wrote. “In medicine, where change is usually slow, the rapid acceptance and delivery of telemedicine is unprecedented.”
This new infrastructure could be useful after the pandemic resolves, and there are still improvements to be made. For example, the researchers suggest that telemedicine could expand access to multidisciplinary care, and some tests — spirometry — could be adapted to better suit telemedicine. This system could also make it easier for people with ALS to participate in research, for example, by minimizing the need for trips to a hospital for in-person evaluations.
“The COVID-19 pandemic has created an unprecedented challenges to ALS clinical care and research,” the researchers concluded. “The traditional face to face paradigm of medical decision making and trial conduct have become difficult or impossible for many sites.
“An unexpected silver lining to these challenges is the development and maturation of a telemedicine infrastructure, providing clinicians and researchers with opportunities to fortify and even improve the way we approach ALS care and research.”
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