1. Remote digital assessment of amyotrophic lateral sclerosis functional rating scale – a multicenter observational study
- Author
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Thomas Meyer, Susanne Spittel, Torsten Grehl, Ute Weyen, Robert Steinbach, Dagmar Kettemann, Susanne Petri, Patrick Weydt, René Günther, Petra Baum, Elena Schlapakow, Jan Christoph Koch, Matthias Boentert, Joachim Wolf, Julian Grosskreutz, Annekathrin Rödiger, Benjamin Ilse, Moritz Metelmann, Jenny Norden, Ruhan Yasemin Koc, Péter Körtvélyessy, Alessio Riitano, Bertram Walter, Barbara Hildebrandt, Friedrich Schaudinn, Christoph Münch, and André Maier
- Subjects
Neurology ,remote assessment ,ddc:610 ,Neurology (clinical) ,Amyotrophic lateral sclerosis ,amyotrophic lateral sclerosis functional rating scale-revised ,self-assessment ,ALS-App - Abstract
Objective: 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. Methods: 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'). Results: 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). Conclusions: 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.
- Published
- 2022
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