App Can Help Monitor ALS Progression in Patients From Home

More ALSFRS-R tests were completed remotely than through clinical visits

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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Using a digital tool to assess disease severity remotely is feasible for people with amyotrophic lateral sclerosis (ALS) and may improve patient monitoring between visits to the clinic, a study suggests.

The tool makes the revised ALS Functional Rating Scale (ALSFRS-R) available to patients via a computer or mobile app, which could help doctors detect and track disease progression and symptoms in a more timely manner.

Even “one additional ALSFRS-R assessment per quarter could bridge the rather large gaps between clinic visits (commonly scheduled once a quarter),” researchers wrote. This represents “an important step toward a digitally supported comprehensive care management that is based on precise and timely information on the patients’ needs.”

The study, “Remote digital assessment of amyotrophic lateral sclerosis functional rating scale – a multicenter observational study,” was published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

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ALSFRS-R assesses changes in ability to perform activities of daily life

For many years, advances in digital health have transformed how healthcare is delivered. Digital assessments are not new to the field, allowing patients to report how they feel and function from home.

The ALSFRS-R is specific to people with ALS. It scores many aspects of day-to-day life that may become difficult for these patients, from speech and swallowing, to cutting food and handling utensils, dressing, walking, and climbing up stairs.

Because the scale does not rely on a physical examination, it may be “reliably administered over the telephone or online.”

Now, a team of researchers in Germany set out to determine if ALS patients are able to fill in the ALSFRS-R remotely using their laptop or desktop computer, or a mobile app available for iOS and android devices.

The study included 1,893 patients from 12 ALS centers across Germany. From August 2017 to the end of 2021, 922 patients (48.7%) completed their ALSFRS-R assessments during their regular visits to the clinic, and 971 (51.3%) completed their assessments in the clinic and remotely.

There were 1,150 men and 743 women, and their mean age at the first study visit was 62.8 years. Among the patients who performed remote assessments, most (88.3%) used a laptop or desktop computer, while 234 (24.1%) chose the mobile app.

Patients filling the assessments remotely were younger and more likely to be men, because this group of patients has a “higher general acceptance of technology and self-confidence on technological competence,” the team noted.

Over an observation period of 53 months (nearly 4.5 years), the researchers registered a total of 9,132 ALSFRS-R assessments. Notably, more patients with remote assessments had at least four ALSFRS-R measurements per year (53.7%), compared with those getting ALSFRS-R assessments in the clinic (46.6%).

In fact, patients seen in the clinic averaged 4.1 annual assessments, which was significantly lower than the 9.6 assessments per year for those opting for remote monitoring.

The number of annual assessments made with the mobile app was nearly double that of those entered via a laptop or desktop computer (14.6 vs. 7.9 assessments per year).

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As ALS patients normally experience a decline of 0.8 points per month on their ALSFRS-R scores, the team suggests that one assessment per month could optimally detect changes in disease severity.

“Remarkably, patients using the ALS-App had already reached this expectation,” which “contributes to the notion that mobile apps may lower the threshold for frequent self-rating and should be studied more intensively,” the team wrote.

“Remote digital self-assessment of ALSFRS-R can provide substantial data which is complementary and potentially an alternative to clinic assessments and could be used for research purposes and person-level patient management,” the researchers concluded, noting that more studies are needed to identify barriers for patients to adopt and adhere to digital assessments of their disease.