Remote digital assessment of amyotrophic lateral sclerosis functional rating scale - a multicenter observational study

Research output: Contribution to journalResearch articleContributedpeer-review

Contributors

  • Thomas Meyer - , Ambulanzpartner Soziotechnologie APST GmbH, Charité – Universitätsmedizin Berlin (Author)
  • Susanne Spittel - , Mental Health Institute Berlin GmbH (Author)
  • Torsten Grehl - , Alfried Krupp Krankenhaus (Author)
  • Ute Weyen - , BG University Hospital Bergmannsheil Bochum (Author)
  • Robert Steinbach - , Jena University Hospital (Author)
  • Dagmar Kettemann - , Mental Health Institute Berlin GmbH (Author)
  • Susanne Petri - , Hannover Medical School (MHH) (Author)
  • Patrick Weydt - , University of Applied Sciences of the Sparkassen-Financial Group - Bonn (Author)
  • René Günther - , Department of Neurology, German Center for Neurodegenerative Diseases, Dresden site (Partner: DZNE of the Helmholtz Association) (Author)
  • Petra Baum - , University Hospital Leipzig (Author)
  • Elena Schlapakow - , Martin Luther University Hospital (Author)
  • Jan Christoph Koch - , University Medical Center Göttingen (Author)
  • Matthias Boentert - , University Hospital Münster (Author)
  • Joachim Wolf - , Diakonissenkrankenhaus Mannheim (Author)
  • Julian Grosskreutz - , Universitätsklinikum Schleswig-Holstein - Campus Lübeck (Author)
  • Annekathrin Rödiger - , Jena University Hospital (Author)
  • Benjamin Ilse - , Jena University Hospital (Author)
  • Moritz Metelmann - , University Hospital Leipzig (Author)
  • Jenny Norden - , Mental Health Institute Berlin GmbH (Author)
  • Ruhan Yasemin Koc - , Mental Health Institute Berlin GmbH (Author)
  • Péter Körtvélyessy - , Mental Health Institute Berlin GmbH (Author)
  • Alessio Riitano - , Mental Health Institute Berlin GmbH (Author)
  • Bertram Walter - , Mental Health Institute Berlin GmbH (Author)
  • Barbara Hildebrandt - , Ambulanzpartner Soziotechnologie APST GmbH (Author)
  • Friedrich Schaudinn - , Ambulanzpartner Soziotechnologie APST GmbH (Author)
  • Christoph Münch - , Mental Health Institute Berlin GmbH (Author)
  • André Maier - , Mental Health Institute Berlin GmbH (Author)

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 languageEnglish
Pages (from-to)175-184
Number of pages10
JournalAmyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Volume24 (2023)
Issue number3-4
Publication statusPublished - 1 Aug 2022
Peer-reviewedYes

External IDs

Scopus 85135456708

Keywords

Keywords

  • Amyotrophic Lateral Sclerosis/diagnosis, Disabled Persons, Disease Progression, Female, Germany, Humans, Male

Library keywords