Remote digital assessment of amyotrophic lateral sclerosis functional rating scale - a multicenter observational study
Research output: Contribution to journal › Research article › Contributed › peer-review
Contributors
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.
Details
Original language | English |
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Pages (from-to) | 175-184 |
Number of pages | 10 |
Journal | Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration |
Volume | 24 (2023) |
Issue number | 3-4 |
Publication status | Published - 1 Aug 2022 |
Peer-reviewed | Yes |
External IDs
Scopus | 85135456708 |
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Keywords
Keywords
- Amyotrophic Lateral Sclerosis/diagnosis, Disabled Persons, Disease Progression, Female, Germany, Humans, Male