Self-assessment of amyotrophic lateral sclerosis functional rating scale on the patient’s smartphone proves to be non-inferior to clinic data capture
Year: 2025
Type: article
Study design: Observational Study
Abstract: Objective To investigate self-assessment of the amyotrophic lateral sclerosis functional rating scale–revised (ALSFRS-R) using the patient’s smartphone and to analyze non-inferiority to clinic assessment. Methods In an observational study, ALSFRS-R data being remotely collected on a mobile application (App-ALSFRS-R) were compared to ALSFRS-R captured during clinic visits (clinic-ALSFRS-R). ALS progression rate (ALSPR) – as calculated by the monthly decline of ALSFRS-R – and its intrasubject variability (ALSPR-ISV) between ratings were used to compare both cohorts. To investigate non-inferiority of App-ALSFRS-R data, a non-inferiority margin was determined. Results 691 ALS patients using the ALS-App, and 1895 patients with clinic assessments were included. Clinical characteristics for the App-ALSFRS-R and clinic-ALSFRS-R cohorts were as follows: Mean age 60.45 (SD 10.43) and 63.69 (SD 11.30) years (p<0.001), disease duration 38.7 (SD 37.68) and 56.75 (SD 54.34) months (p<0.001) and ALSPR 0.72 and 0.59 (p<0.001), respectively. A paired sample analysis of ALSPR-ISV was applicable for 398 patients with clinic as well as app assessments and did not show a significant difference (IQR 0.12 [CI 0.11, 0.14] vs 0.12 [CI 0.11, 0.14], p=0.24; Coheńs d =0.06). CI of IQR for App-ALSFRS-R was below the predefined non-inferiority margin of 0.15 IQR, demonstrating non-inferiority. Conclusions Patients using a mobile application for remote digital self-assessment of the ALSFRS-R revealed younger age, earlier disease course and faster ALS progression. The finding of non-inferiority of App-ALSFRS-R assessments underscores, that data collection using the ALS-App on the patient’s smartphone can serve as additional source of ALSFRS-R in ALS research and clinical practice.
Authors: Laura Steinfurth, Torsten Grehl, Ute Weyen, Dagmar Kettemann, Robert Steinbach, Annekathrin Rödiger, Julian Grosskreutz, Susanne Petri, Matthias Boentert, Patrick Weydt, Sarah Bernsen, Bertram Walter, René GüNTHER, Paul Lingor, Jan Christoph Koch, Petra Baum, Jochen H. Weishaupt, Johannes Dorst, Yasemin Koc, Isabell Cordts, Maximilian Vidovic, Jenny Norden, Peggy Schumann, Péter Körtvélyessy, Susanne Spittel, Christoph Münch, André Maier, Thomas Meyer
Institutions: Humboldt-Universität zu Berlin, Charité - Universitätsmedizin Berlin, Alfried Krupp Hospital, BG University Hospital Bergmannsheil Bochum, Jena University Hospital, University Hospital Schleswig-Holstein, Medizinische Hochschule Hannover, University Hospital Münster, University of Bonn, German Center for Neurodegenerative Diseases, University Hospital Carl Gustav Carus, German Center for Neurodegenerative Diseases (DZNE) Dresden, Technische Universität Dresden, TUM Klinikum, Technical University of Munich, Universitätsmedizin Göttingen, University of Göttingen, University Hospital Leipzig, Heidelberg University, Universität Ulm
Language: English
Subfield: Neurology
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
OpenAlex ID: W4407858722