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Self-assessment of amyotrophic lateral sclerosis functional rating scale on the patient’s smartphone proves to be non-inferior to clinic data capture

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. In an observational study, ALSFRS-R data being remotely collected on a mobile application (App-ALSFRS-R)...

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Main Authors: Steinfurth, Laura (Author) , Grehl, Torsten (Author) , Weyen, Ute (Author) , Kettemann, Dagmar (Author) , Steinbach, Robert (Author) , Rödiger, Annekathrin (Author) , Grosskreutz, Julian (Author) , Petri, Susanne (Author) , Boentert, Matthias (Author) , Weydt, Patrick (Author) , Bernsen, Sarah (Author) , Walter, Bertram (Author) , Günther, René (Author) , Lingor, Paul (Author) , Koch, Jan Christoph (Author) , Baum, Petra (Author) , Weishaupt, Jochen H. (Author) , Dorst, Johannes (Author) , Koc, Yasemin (Author) , Cordts, Isabell (Author) , Vidovic, Maximilian (Author) , Norden, Jenny (Author) , Schumann, Peggy (Author) , Körtvélyessy, Péter (Author) , Spittel, Susanne (Author) , Münch, Christoph (Author) , Maier, André (Author) , Meyer, Thomas (Author)
Format: Article (Journal)
Language:English
Published: 22 Feb 2025
In: Amyotrophic lateral sclerosis & frontotemporal degeneration
Year: 2025, Volume: 26, Issue: 5/6, Pages: 495-506
ISSN:2167-9223
DOI:10.1080/21678421.2025.2468404
Online Access:Verlag, lizenzpflichtig, Volltext: https://doi.org/10.1080/21678421.2025.2468404
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Author Notes: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
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Summary: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. 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. A total of 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; Cohen’s d = 0.06). CI of IQR for App-ALSFRS-R was below the predefined non-inferiority margin of 0.15 IQR, demonstrating non-inferiority. 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.
Item Description:Gesehen am 22.07.2025
Physical Description:Online Resource
ISSN:2167-9223
DOI:10.1080/21678421.2025.2468404

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