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000165183 0247_ $$2ISSN$$a1748-2968
000165183 0247_ $$2ISSN$$a2167-8421
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000165183 037__ $$aDZNE-2022-01485
000165183 041__ $$aEnglish
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000165183 1001_ $$aMeyer, Thomas$$b0
000165183 245__ $$aRemote digital assessment of amyotrophic lateral sclerosis functional rating scale - a multicenter observational study.
000165183 260__ $$aAbingdon$$bTaylor Francis Group$$c2023
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000165183 520__ $$a Remote self-assessment of the revised amyotrophic lateral sclerosis functional rating scale (ALSFRS-R) using digital data capture was investigated for its feasibility as an add-on to ALSFRS-R assessments during multidisciplinary clinic visits.From August 2017 to December 2021, at 12 ALS centers in Germany, an observational study on remote assessment of the ALSFRS-R was performed. In addition to the assessment of ALSFRS-R during clinic visits, patients were offered a digital self-assessment of the ALSFRS-R - either on a computer or on a mobile application ('ALS-App').An estimated multicenter cohort of 4,670 ALS patients received care at participating ALS centers. Of these patients, 971 remotely submitted the ALSFRS-R, representing 21% of the multicenter cohort. Of those who opted for remote assessment, 53.7% (n = 521) completed a minimum of 4 ALSFRS-R per year with a mean number of 10.9 assessments per year. Different assessment frequencies were found for patients using a computer (7.9 per year, n = 857) and mobile app (14.6 per year, n = 234). Patients doing remote assessments were more likely to be male and less functionally impaired but many patients with severe disability managed to complete it themselves or with a caregiver (35% of remote ALSFRS-R cohort in King's Stage 4).In a dedicated ALS center setting remote digital self-assessment of ALSFRS-R can provide substantial data which is complementary and potentially an alternative to clinic assessments and could be used for research purposes and person-level patient management. Addressing barriers relating to patient uptake and adherence are key to its success.
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000165183 650_7 $$2Other$$aALS-App
000165183 650_7 $$2Other$$aAmyotrophic lateral sclerosis
000165183 650_7 $$2Other$$aamyotrophic lateral sclerosis functional rating scale-revised
000165183 650_7 $$2Other$$aremote assessment
000165183 650_7 $$2Other$$aself-assessment
000165183 650_2 $$2MeSH$$aPersons with Disabilities
000165183 650_2 $$2MeSH$$aHumans
000165183 650_2 $$2MeSH$$aMale
000165183 650_2 $$2MeSH$$aFemale
000165183 650_2 $$2MeSH$$aAmyotrophic Lateral Sclerosis: diagnosis
000165183 650_2 $$2MeSH$$aDisabled Persons
000165183 650_2 $$2MeSH$$aGermany
000165183 650_2 $$2MeSH$$aDisease Progression
000165183 7001_ $$aSpittel, Susanne$$b1
000165183 7001_ $$aGrehl, Torsten$$b2
000165183 7001_ $$aWeyen, Ute$$b3
000165183 7001_ $$aSteinbach, Robert$$b4
000165183 7001_ $$aKettemann, Dagmar$$b5
000165183 7001_ $$aPetri, Susanne$$b6
000165183 7001_ $$0P:(DE-2719)9001116$$aWeydt, Patrick$$b7$$udzne
000165183 7001_ $$0P:(DE-2719)2811849$$aGünther, René$$b8$$udzne
000165183 7001_ $$aBaum, Petra$$b9
000165183 7001_ $$aSchlapakow, Elena$$b10
000165183 7001_ $$aKoch, Jan Christoph$$b11
000165183 7001_ $$aBoentert, Matthias$$b12
000165183 7001_ $$aWolf, Joachim$$b13
000165183 7001_ $$aGrosskreutz, Julian$$b14
000165183 7001_ $$aRödiger, Annekathrin$$b15
000165183 7001_ $$aIlse, Benjamin$$b16
000165183 7001_ $$aMetelmann, Moritz$$b17
000165183 7001_ $$aNorden, Jenny$$b18
000165183 7001_ $$aKoc, Ruhan Yasemin$$b19
000165183 7001_ $$0P:(DE-2719)2812030$$aKörtvelyessy, Peter$$b20$$udzne
000165183 7001_ $$aRiitano, Alessio$$b21
000165183 7001_ $$aWalter, Bertram$$b22
000165183 7001_ $$aHildebrandt, Barbara$$b23
000165183 7001_ $$aSchaudinn, Friedrich$$b24
000165183 7001_ $$aMünch, Christoph$$b25
000165183 7001_ $$aMaier, André$$b26
000165183 773__ $$0PERI:(DE-600)2705061-0$$a10.1080/21678421.2022.2104649$$gp. 1 - 10$$n3-4$$p175-184$$tAmyotrophic lateral sclerosis & frontotemporal degeneration$$v24$$x1466-0822$$y2023
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