The recording of the course of the disease amyotrophic lateral sclerosis (ALS) with the help of the ALS Functional Scale (ALSFRS-R) is of great relevance for those affected themselves, the ALS outpatient clinics, but also for medical research. The ALS app and the Ambulanzpartner portal offer people with ALS the possibility to fill out the ALS Functional Scale questionnaire themselves, mobile and from home. The Ambulanzpartner portal has been providing the self-assessment via the ALS Functional Scale since 2017 and the ALS app since 2020. This has made it possible to digitally record many courses of the disease in recent years.
What was eagerly awaited - scientific evaluation of the data
In August 2022, the results of a scientific evaluation of the digital recording of the ALS function scale via portal or smartphone were published in the professional journal "ALS". In the process, the data of 620 people with ALS who are receiving care in various ALS outpatient clinics in Germany and - in addition to their outpatient treatment - have had the ALS function scale recorded digitally were evaluated. The result was impressive and very positive: 9.6 times per year, those affected filled out the ALS Functional Scale either via computer or smartphone. The questionnaire was answered particularly frequently via the ALS app: 14.6 times per year, the ALS app was used to report one's own course of disease using the ALS Functional Scale. This meant that twice as much data could be collected from home (9.6 times per year) compared to the on-site visits to the ALS outpatient clinics (4.1 times per year).
Figure: Frequency of self-assessments using the ALS Functional Scale per year. The frequency of ALSFRS self-assessments is shown between the group with answers to the ALS Functional Scale in the ALS Outpatient Clinic (Outpatient) compared to self-assessment via the portal (computer) or via the mobile app (ALS App). n: Number of patients. Source: Remote digital assessment of amyotrophic lateral sclerosis functional rating scale - a multicenter observational study. Amyotrophic Lateral Scler Frontotemporal Degenerative Disease. 2022 August
These data support the assessment that people with ALS are willing and able to answer the ALS Functional Scale via the ALS App. On this basis, clinical studies with digital recording of the ALS Functional Scale can be designed more effectively in the future. Furthermore, these data show that the ALS app is suitable for establishing a regular connection to those affected and can be used as additional support for care during the course of the disease. For this purpose, the ALS app offers the possibility to communicate care needs and to contact care coordinators directly.
About the ALS Functional Scale (ALSFRS-R):
It is an internationally established questionnaire with 12 questions on typical symptoms of ALS. For each question, 5 answer options are offered. By answering the questions, the motor symptoms and functional limitations can be systematically recorded.
About the publication:
The published scientific analysis is the most comprehensive evaluation to date on the digital recording of the ALSFRS-R and has received international attention. The results have already been presented at the European ALS Conference (ENCALS) in Edinburgh (UK) in May 2022.
About the ALS Journal:
The detailed title of the journal is: "Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration (ALS-FTDG)". This journal is dedicated to the study of motor neuron diseases, in particular ALS and frontotemporal degeneration (FTD), which occurs in part of those affected in connection with ALS. The journal (ALS-FTDG) is the official journal of the World Federation of Neurology Research Group on Motor Neuron Diseases. It promotes awareness of ALS (and FTD) and publishes on new developments in the pathogenesis and treatment of ALS and FTD.
Link to the publication on Ambulanzpartner:
https://www.ambulanzpartner.de/publikationen/
Link to the publication at the publisher:
https://www.tandfonline.com/doi/epub/10.1080/21678421.2022.2104649?needAccess=true
