Smartphone app may help in monitoring ALS beyond clinic visits
At-home tool seen as comparable in capturing changes in ALSFRS-R scores
Using a smartphone app to self-assess ALS Functional Rating Scale-Revised (ALSFRS-R) scores, a standardized measure of amyotrophic lateral sclerosis (ALS) severity, may be as reliable as clinic-based assessments, a study reports.
Its findings suggest this app could be a useful digital tool for remote monitoring of ALS, allowing patients to track how fast their disease is progressing at home while awaiting a next clinic visit. Called the ALS App, the tool also may increase the amount of data gathered in clinical trials, while reducing the costs accompanying frequent healthcare visits.
“These findings have several practical implications and benefits, potentially streamlining patient monitoring and enhancing the efficiency of clinical trials,” Thomas Meyer, MD, the study’s lead author and a neurologist at Charité Universitätsmedizin Berlin in Germany, wrote in an email to ALS News Today.
The study, “Self-assessment of amyotrophic lateral sclerosis functional rating scale on the patient’s smartphone proves to be non-inferior to clinic data capture,” was published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.
ALSFRS-R assesses range of abilities, from swallowing to walking
ALS is a neurodegenerative disease that weakens muscles and makes movement more difficult over time, considerably affecting daily life. Available disease treatments help to slow its progression, which usually is monitored during clinic visits.
“ALS progression serves as a key prognostic indicator for individual disease trajectories. Moreover, slowing disease progression is the primary outcome measure in most clinical trials, underscoring the critical importance of accurately assessing the ALS progression rate,” Meyer wrote in a summary of the study. He also was the primary author of an earlier study into at-home ALSFRS-R assessments that showed an openness to them using a computer or a mobile app.
ALSFRS-R, which covers a number of activities of daily living, such as speaking, swallowing, and walking, is used broadly to measure progression in patients. Traditionally, this assessment is completed during a visit under the supervision of a doctor or other healthcare professional.
Meyer and his research team investigated whether patients could accurately assess ALSFRS-R scores on their own using a smartphone app, and whether this method was as reliable as the traditional clinic-based assessments. The app is available for smartphone or tablet use in Germany, Austria, and Switzerland, the study noted.
Across 16 ALS centers in Germany and Austria, 691 patients diagnosed with ALS used the smartphone app for self-assessments, while 1,895 others completed these assessments in a clinical setting. Another 398 patients — called a combined ALSFRS-R group — completed their assessments both via the app and in the clinic.
Patients using the app were generally younger and in the earlier stages of the disease, but they more frequently had faster progressing ALS, compared with those assessed in clinics.
No significant score difference seen in a patient tested at home and in clinic
Researchers looked at how scores varied within individuals across the assessment groups. Results showed that the intrasubject variability of ALSFRS-R scores in the app group was low, although it was significantly lower in the clinic group.
Still, in the combined ALSFRS-R cohort, the variability of scores within the same individual showed no significant difference between the two methods. The differences were deemed to be below an established threshold for determining whether the app was inferior to clinic assessment.
In other words, smartphone-based ALSFRS-R assessments were considered not to be inferior (that is, they’re no less reliable) than clinic-based assessments. At-home assessment also offers a convenient and accessible way for patients to track their disease progression without frequent clinic visits, the researchers noted.
“The findings suggest that app assessments can increase ALSFRS-R data density between clinic visits, might fill data gaps of missing onsite visits or allow the remote assessment of the ALSFRS-R when clinic visits are burdensome and in protracted intervals,” Meyer said.
Patients over the study’s years (May 2020 until April 2024) used different versions of the smartphone app, a change that could have affected self-assessment results. For this reason, “other studies are ongoing that include head-to-head comparisons of different versions of the ALSFRS-R,” the researchers wrote.
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