Dataset

DZNE-2025-00856

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png Remote digital assessment of amyotrophic lateral sclerosis functional rating scale – a multicenter observational study

Meyer, T. ; Spittel, S. ; Grehl, T. ; Weyen, U. ; Steinbach, R. ; Kettemann, D. ; Petri, S. ; Weydt, P.Extern* ; Günther, R.DZNE* ; Baum, P. ; Schlapakow, E. ; Koch, J. C. ; Boentert, M. ; Wolf, J. ; Grosskreutz, J. ; Rödiger, A. ; Ilse, B. ; Metelmann, M. ; Norden, J. ; Koc, R. Y. ; Körtvelyessy, P.Extern* ; Riitano, A. ; Walter, B. ; Hildebrandt, B. ; Schaudinn, F. ; Münch, C. ; Maier, A.

2022
Taylor & Francis

This record in other databases:

Please use a persistent id in citations: doi:10.6084/M9.FIGSHARE.20411363  doi:10.6084/m9.figshare.20411363

Abstract: Remote self-assessment of the revised amyotrophic lateral sclerosis functional rating scale (ALSFRS-R) using digital data capture was investigated for its feasibility as an add-on to ALSFRS-R assessments during multidisciplinary clinic visits. From August 2017 to December 2021, at 12 ALS centers in Germany, an observational study on remote assessment of the ALSFRS-R was performed. In addition to the assessment of ALSFRS-R during clinic visits, patients were offered a digital self-assessment of the ALSFRS-R – either on a computer or on a mobile application (“ALS-App”). An estimated multicenter cohort of 4,670 ALS patients received care at participating ALS centers. Of these patients, 971 remotely submitted the ALSFRS-R, representing 21% of the multicenter cohort. Of those who opted for remote assessment, 53.7% ( n = 521) completed a minimum of 4 ALSFRS-R per year with a mean number of 10.9 assessments per year. Different assessment frequencies were found for patients using a computer (7.9 per year, n = 857) and mobile app (14.6 per year, n = 234). Patients doing remote assessments were more likely to be male and less functionally impaired but many patients with severe disability managed to complete it themselves or with a caregiver (35% of remote ALSFRS-R cohort in King’s Stage 4). In a dedicated ALS center setting remote digital self-assessment of ALSFRS-R can provide substantial data which is complementary and potentially an alternative to clinic assessments and could be used for research purposes and person-level patient management. Addressing barriers relating to patient uptake and adherence are key to its success.

Keyword(s): Cell Biology ; Environmental Sciences not elsewhere classified ; Biological Sciences not elsewhere classified ; Developmental Biology ; Science Policy ; Mental Health ; Hematology ; Infectious Diseases

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Contributing Institute(s):

1. Translational Parkinson Research (AG Falkenburger)

Research Program(s):

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

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Linked articles:

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png Journal Article Meyer, T. ; Spittel, S. ; Grehl, T. ; Weyen, U. ; Steinbach, R. ; Kettemann, D. ; Petri, S. ; Weydt, P.Extern* ; Günther, R.DZNE* ; Baum, P. ; Schlapakow, E. ; Koch, J. C. ; Boentert, M. ; Wolf, J. ; Grosskreutz, J. ; Rödiger, A. ; Ilse, B. ; Metelmann, M. ; Norden, J. ; Koc, R. Y. ; Körtvelyessy, P.Extern* ; Riitano, A. ; Walter, B. ; Hildebrandt, B. ; Schaudinn, F. ; Münch, C. ; Maier, A.
Remote digital assessment of amyotrophic lateral sclerosis functional rating scale - a multicenter observational study.
Amyotrophic lateral sclerosis & frontotemporal degeneration 24(3-4), 175-184 (2023) [10.1080/21678421.2022.2104649]2023   Files BibTeX | EndNote: XML, Text | RIS

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