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; Günther R; Baum P; Schlapakow E; Koch JC; Boentert M; Wolf J; Grosskreutz J; Ilse B; Rödiger A; Norden J; Metelmann M; Körtvélyessy P; Koc RY; Walter B; Riitano A; Schaudinn F; Hildebrandt B; Maier A; Münch C

Abstract

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").; 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.; 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.;  = 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). - METHODS - OBJECTIVE - CONCLUSIONS - RESULTS