| Autor: |
Meyer, Thomas, Spittel, Susanne, Grehl, Torsten, Weyen, Ute, Steinbach, Robert, Kettemann, Dagmar, Petri, Susanne, Weydt, Patrick, Günther, René, Baum, Petra, Schlapakow, Elena, Koch, Jan Christoph, Boentert, Matthias, Wolf, Joachim, Grosskreutz, Julian, Rödiger, Annekathrin, Ilse, Benjamin, Metelmann, Moritz, Norden, Jenny, Koc, Ruhan Yasemin |
| Předmět: |
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| Zdroj: |
Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration; May2023, Vol. 24 Issue 3/4, p175-184, 10p |
| Abstrakt: |
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. [ABSTRACT FROM AUTHOR] |
| Databáze: |
Complementary Index |
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