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@ARTICLE{Meyer:165183,
      author       = {Meyer, Thomas and Spittel, Susanne and Grehl, Torsten and
                      Weyen, Ute and Steinbach, Robert and Kettemann, Dagmar and
                      Petri, Susanne and Weydt, Patrick and Günther, René and
                      Baum, Petra and Schlapakow, Elena and Koch, Jan Christoph
                      and Boentert, Matthias and Wolf, Joachim and Grosskreutz,
                      Julian and Rödiger, Annekathrin and Ilse, Benjamin and
                      Metelmann, Moritz and Norden, Jenny and Koc, Ruhan Yasemin
                      and Körtvelyessy, Peter and Riitano, Alessio and Walter,
                      Bertram and Hildebrandt, Barbara and Schaudinn, Friedrich
                      and Münch, Christoph and Maier, André},
      title        = {{R}emote digital assessment of amyotrophic lateral
                      sclerosis functional rating scale - a multicenter
                      observational study.},
      journal      = {Amyotrophic lateral sclerosis $\&$ frontotemporal
                      degeneration},
      volume       = {24},
      number       = {3-4},
      issn         = {1466-0822},
      address      = {Abingdon},
      publisher    = {Taylor Francis Group},
      reportid     = {DZNE-2022-01485},
      pages        = {175-184},
      year         = {2023},
      abstract     = {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.},
      keywords     = {Persons with Disabilities / Humans / Male / Female /
                      Amyotrophic Lateral Sclerosis: diagnosis / Disabled Persons
                      / Germany / Disease Progression / ALS-App (Other) /
                      Amyotrophic lateral sclerosis (Other) / amyotrophic lateral
                      sclerosis functional rating scale-revised (Other) / remote
                      assessment (Other) / self-assessment (Other)},
      cin          = {Clinical Study Team Dresden ; AG Falkenburger},
      ddc          = {610},
      cid          = {I:(DE-2719)1710012},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:35912984},
      doi          = {10.1080/21678421.2022.2104649},
      url          = {https://pub.dzne.de/record/165183},
}