% IMPORTANT: The following is UTF-8 encoded. This means that in the presence
% of non-ASCII characters, it will not work with BibTeX 0.99 or older.
% Instead, you should use an up-to-date BibTeX implementation like “bibtex8” or
% “biber”.
@ARTICLE{Steinfurth:280050,
author = {Steinfurth, Laura and Grehl, Torsten and Weyen, Ute and
Kettemann, Dagmar and Steinbach, Robert and Rödiger,
Annekathrin and Grosskreutz, Julian and Petri, Susanne and
Boentert, Matthias and Weydt, Patrick and Bernsen, Sarah and
Walter, Bertram and GüNTHER, René and Lingor, Paul and
Koch, Jan Christoph and Baum, Petra and Weishaupt, Jochen H
and Dorst, Johannes and Koc, Yasemin and Cordts, Isabell and
Vidovic, Maximilian and Norden, Jenny and Schumann, Peggy
and Körtvelyessy, Peter and Spittel, Susanne and Münch,
Christoph and Maier, André and Meyer, Thomas},
title = {{S}elf-assessment of amyotrophic lateral sclerosis
functional rating scale on the patient's smartphone proves
to be non-inferior to clinic data capture.},
journal = {Amyotrophic lateral sclerosis $\&$ frontotemporal
degeneration},
volume = {26},
number = {5-6},
issn = {2167-8421},
address = {Abingdon},
publisher = {Taylor Francis Group},
reportid = {DZNE-2025-00887},
pages = {495 - 506},
year = {2025},
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.},
keywords = {Humans / Amyotrophic Lateral Sclerosis: diagnosis /
Amyotrophic Lateral Sclerosis: psychology / Amyotrophic
Lateral Sclerosis: physiopathology / Male / Smartphone /
Female / Middle Aged / Aged / Mobile Applications /
Self-Assessment / Disease Progression / Severity of Illness
Index / Cohort Studies / ALS-App (Other) / Amyotrophic
lateral sclerosis (Other) / amyotrophic lateral sclerosis
functional rating scale-revised (Other) / remote assessment
(Other) / self-assessment (Other)},
cin = {Clinical Research (Bonn) / AG Radbruch / AG Falkenburger /
Clinical Research (Munich) / Clinical Study Center (Ulm)},
ddc = {610},
cid = {I:(DE-2719)1011001 / I:(DE-2719)5000075 /
I:(DE-2719)1710012 / I:(DE-2719)1111015 /
I:(DE-2719)5000077},
pnm = {353 - Clinical and Health Care Research (POF4-353)},
pid = {G:(DE-HGF)POF4-353},
typ = {PUB:(DE-HGF)16},
pubmed = {pmid:39985291},
doi = {10.1080/21678421.2025.2468404},
url = {https://pub.dzne.de/record/280050},
}