Journal Article

DZNE-2025-00887

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png Self-assessment of amyotrophic lateral sclerosis functional rating scale on the patient's smartphone proves to be non-inferior to clinic data capture.

Steinfurth, L. ; Grehl, T. ; Weyen, U. ; Kettemann, D. ; Steinbach, R. ; Rödiger, A. ; Grosskreutz, J. ; Petri, S. ; Boentert, M. ; Weydt, P.DZNE* ; Bernsen, S.DZNE* ; Walter, B. ; GüNTHER, R.DZNE* ; Lingor, P.DZNE* ; Koch, J. C. ; Baum, P. ; Weishaupt, J. H. ; Dorst, J.DZNE* ; Koc, Y. ; Cordts, I. ; Vidovic, M. ; Norden, J. ; Schumann, P. ; Körtvelyessy, P.Extern* ; Spittel, S. ; Münch, C. ; Maier, A. ; Meyer, T.

2025
Taylor Francis Group Abingdon

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Please use a persistent id in citations: doi:10.1080/21678421.2025.2468404

Abstract: 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.

Keyword(s): Humans (MeSH) ; Amyotrophic Lateral Sclerosis: diagnosis (MeSH) ; Amyotrophic Lateral Sclerosis: psychology (MeSH) ; Amyotrophic Lateral Sclerosis: physiopathology (MeSH) ; Male (MeSH) ; Smartphone (MeSH) ; Female (MeSH) ; Middle Aged (MeSH) ; Aged (MeSH) ; Mobile Applications (MeSH) ; Self-Assessment (MeSH) ; Disease Progression (MeSH) ; Severity of Illness Index (MeSH) ; Cohort Studies (MeSH) ; ALS-App ; Amyotrophic lateral sclerosis ; amyotrophic lateral sclerosis functional rating scale-revised ; remote assessment ; self-assessment

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Contributing Institute(s):

1. Clinical Research Coordination (Clinical Research (Bonn))
2. Clinical Neuroimaging (AG Radbruch)
3. Translational Parkinson Research (AG Falkenburger)
4. Clinical Research (Munich) (Clinical Research (Munich))
5. Clinical Study Center (Ulm) (Clinical Study Center (Ulm))

Research Program(s):

1. 353 - Clinical and Health Care Research (POF4-353) (POF4-353)

Appears in the scientific report 2025

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Database coverage:
; ; ; Clarivate Analytics Master Journal List ; Current Contents - Clinical Medicine ; Ebsco Academic Search ; Essential Science Indicators ; IF < 5 ; JCR ; SCOPUS ; Science Citation Index Expanded ; Web of Science Core Collection

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