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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 24, 2023 - Issue 3-4
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Clinical

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

Thomas Meyer1 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany;2 Ambulanzpartner Soziotechnologie APST GmbH, Berlin, GermanyCorrespondence[email protected]
View further author information
,
Susanne Spittel1 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany;2 Ambulanzpartner Soziotechnologie APST GmbH, Berlin, GermanyView further author information
,
Torsten Grehl3 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Alfried Krupp Krankenhaus, Essen, GermanyView further author information
,
Ute Weyen4 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil, Bochum, GermanyView further author information
,
Robert Steinbach5 Hans Berger Department of Neurology, Jena University Hospital, Jena, GermanyView further author information
,
Dagmar Kettemann1 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, GermanyView further author information
,
Susanne Petri6 Department of Neurology, Hannover Medical School, Hannover, GermanyView further author information
,
Patrick Weydt7 Department for Neurodegenerative Disorders and Gerontopsychiatry, Bonn University, Bonn, GermanyView further author information
,
René Günther8 Department of Neurology, University Hospital Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany;9 DZNE, German Center for Neurodegenerative Diseases, Research Site Dresden, Dresden, GermanyView further author information
,
Petra Baum10 Department of Neurology, Universitätsklinikum Leipzig, Leipzig, GermanyView further author information
,
Elena Schlapakow11 Department of Neurology, Universitätsklinikum Halle, Halle (Saale), GermanyView further author information
,
Jan Christoph Koch12 Department of Neurology, Universitätsmedizin Göttingen, Göttingen, GermanyView further author information
,
Matthias Boentert13 Department of Sleep Medicine and Neuromuscular Disorders, Universitätsklinikum Münster, Münster, GermanyView further author information
,
Joachim Wolf14 Department of Neurology, Diako Mannheim, Mannheim, GermanyView further author information
,
Julian Grosskreutz15 Precision Neurology, Universitätsklinikum Schleswig-Holstein, Lübeck, GermanyView further author information
,
Annekathrin Rödiger5 Hans Berger Department of Neurology, Jena University Hospital, Jena, GermanyView further author information
,
Benjamin Ilse5 Hans Berger Department of Neurology, Jena University Hospital, Jena, GermanyView further author information
,
Moritz Metelmann10 Department of Neurology, Universitätsklinikum Leipzig, Leipzig, GermanyView further author information
,
Jenny Norden1 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, GermanyView further author information
,
Ruhan Yasemin Koc1 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, GermanyView further author information
,
Péter Körtvélyessy1 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, GermanyView further author information
,
Alessio Riitano1 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, GermanyView further author information
,
Bertram Walter1 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, GermanyView further author information
,
Barbara Hildebrandt2 Ambulanzpartner Soziotechnologie APST GmbH, Berlin, GermanyView further author information
,
Friedrich Schaudinn2 Ambulanzpartner Soziotechnologie APST GmbH, Berlin, GermanyView further author information
,
Christoph Münch1 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany;2 Ambulanzpartner Soziotechnologie APST GmbH, Berlin, GermanyView further author information
&
André Maier1 Department of Neurology, Center for ALS and other Motor Neuron Disorders, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, GermanyView further author information
 show all
Pages 175-184 | Received 24 Jan 2022, Accepted 18 Jul 2022, Published online: 01 Aug 2022

References

  • Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS study group (phase III). J Neurol Sci. 1999;169:13–21.
  • Voustianiouk A, Seidel G, Panchal J, Sivak M, Czaplinski A, Yen A, et al. ALSFRS and appel ALS scores: discordance with disease progression. Muscle Nerve. 2008;37:668–72.
  • Group TACTSAPI-IS. The amyotrophic lateral sclerosis functional rating scale. assessment of activities of daily living in patients with amyotrophic lateral sclerosis. Arch Neurol 1996;53:141–7.
  • Kaufmann P, Levy G, Montes J, Buchsbaum R, Barsdorf AI, Battista V, et al. Excellent inter-rater, intra-rater, and telephone-administered reliability of the ALSFRS-R in a multicentre clinical trial. Amyotroph Lateral Scler. 2007;8:42–6.
  • Cedarbaum JM, Stambler N. Performance of the amyotrophic lateral sclerosis functional rating scale (ALSFRS) in multicentre clinical trials. J Neurol Sci. 1997;152: S1–S9.
  • Mannino M, Cellura E, Grimaldi G, Volanti P, Piccoli F, La Bella V. Telephone follow-up for patients with amyotrophic lateral sclerosis. Eur J Neurol. 2007;14:79–84.
  • Maier A, Holm T, Wicks P, Steinfurth L, Linke P, Münch C, et al. Online assessment of ALS functional rating scale compares well to in-clinic evaluation: a prospective trial. Amyotroph Lateral Scler. 2012;13:210–6.
  • Hobson E, Baird W, Bradburn M, Cooper C, Mawson S, Quinn A, et al. Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre. BMJ Open. 2019;9:e028526.
  • Hobson E, Baird W, Bradburn M, Cooper C, Mawson S, Quinn A, et al. Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study. BMJ Open. 2019; Oct 229:e028525.
  • Helleman J, Kruitwagen ET, van den Berg LH, Visser-Meily JMA, Beelen A. The current use of telehealth in ALS care and the barriers to and facilitators of implementation: a systematic review. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21:167–82.
  • Montes J, Levy G, Albert S, Kaufmann P, Buchsbaum R, Gordon PH, et al. Development and evaluation of a self-administered version of the ALSFRS-R. Neurology 2006;67:1294–6.
  • Kasarskis EJ, Dempsey-Hall L, Thompson MM, Luu LC, Mendiondo M, Kryscio R. Rating the severity of ALS by caregivers over the telephone using the ALSFRS-R. Amyotroph Lateral Scler Other Motor Neuron Disord. 2005;6:50–4.
  • Miano B, Stoddard GJ, Davis S, Bromberg MB. Inter-evaluator reliability of the ALS functional rating scale. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5:235–9.
  • Bakker LA, Schröder CD, Tan HHG, Vugts S, van Eijk RPA, van Es MA, et al. Development and assessment of the inter-rater and intra-rater reproducibility of a self-administration version of the ALSFRS-R. J Neurol Neurosurg Psychiatry. 2020;91:75–81.
  • Chew S, Burke KM, Collins E, Church R, Paganoni S, Nicholson K, et al. Patient reported outcomes in ALS: characteristics of the self-entry ALS functional rating scale-revised and the activities-specific balance confidence scale. Amyotroph Lateral Scler Frontotemporal Degener 2021;22(7–8):1–11.
  • Berry JD, Paganoni S, Carlson K, Burke K, Weber H, Staples P, et al. Design and results of a smartphone-based digital phenotyping study to quantify ALS progression. Ann Clin Transl Neurol. 2019;6:873–81.
  • Rutkove SB, Qi K, Shelton K, Liss J, Berisha V, Shefner JM. ALS longitudinal studies with frequent data collection at home: study design and baseline data. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20:61–7.
  • Vandenbroucke JP, von Elm E, Altman DG, Gøtzsche PC, Mulrow CD, Pocock SJ, et al. Strengthening the reporting of observational studies in epidemiology (STROBE): explanation and elaboration. Ann Intern Med. 2007;147:W163–94.
  • von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP. The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies. Lancet. 2007;370:1453–7.
  • Brooks BR, Miller RG, Swash M, Munsat TL. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
  • Meyer T, Kettemann D, Maier A, Grehl T, Weyen U, Grosskreutz J, et al. Symptomatic pharmacotherapy in ALS: data analysis from a platform-based medication management programme. J Neurol Neurosurg Psychiatry. 2020;91:783–5.
  • Funke A, Spittel S, Grehl T, Grosskreutz J, Kettemann D, Petri S, et al. Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19:342–50.
  • Meyer T, Funke A, Münch C, Kettemann D, Maier A, Walter B, et al. Real world experience of patients with amyotrophic lateral sclerosis (ALS) in the treatment of spasticity using tetrahydrocannabinol:cannabidiol (THC:CBD). BMC Neurol. 2019;19:222.
  • Balendra R, Jones A, Jivraj N, Knights C, Ellis CM, Burman R, et al. Estimating clinical stage of amyotrophic lateral sclerosis from the ALS functional rating scale. Amyotroph Lateral Scler Frontotemporal Degener. 2014; 15:279–84.
  • Abdulla S, Vielhaber S, Körner S, Machts J, Heinze HJ, Dengler R, et al. Validation of the German version of the extended ALS functional rating scale as a patient-reported outcome measure. J Neurol. 2013;260:2242–55.
  • Maier A, Eicher C, Kiselev J, Klebbe R, Greuèl M, Kettemann D, et al. Acceptance of enhanced robotic assistance systems in people with amyotrophic lateral sclerosis-associated motor impairment: observational online study. JMIR Rehabil Assist Technol. 2021;8:e18972.
  • Westeneng HJ, Debray TPA, Visser AE, van Eijk RPA, Rooney JPK, Calvo A, et al. Prognosis for patients with amyotrophic lateral sclerosis: development and validation of a personalised prediction model. Lancet Neurol. 2018;17:423–33.
  • Rutkove SB, Narayanaswami P, Berisha V, Liss J, Hahn S, Shelton K, et al. Improved ALS clinical trials through frequent at-home self-assessment: a proof of concept study. Ann Clin Transl Neurol. 2020;7:1148–57.
  • van Eijk RPA. Frequent self-assessments in ALS clinical trials: worthwhile or an unnecessary burden for patients? Ann Clin Transl Neurol. 2020;7:2074–5.
  • Baxter S, McDermott CJ. Decision-making and referral processes for patients with motor neurone disease: a qualitative study of GP experiences and evaluation of a new decision-support tool. BMC Health Serv Res. 2017;17:339.
  • Hobson EV, Baird WO, Partridge R, Cooper CL, Mawson S, Quinn A, et al. The TiM system: developing a novel telehealth service to improve access to specialist care in motor neurone disease using user-centered design. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19:351–61.
  • Garcia-Gancedo L, Kelly ML, Lavrov A, Parr J, Hart R, Marsden R, et al. Objectively monitoring amyotrophic lateral sclerosis patient symptoms during clinical trials with sensors: observational study. JMIR Mhealth Uhealth. 2019;7:e13433.
  • Beukenhorst AL, Burke KM, Scheier Z, Miller TM, Paganoni S, Keegan M, et al. Using smartphones to reduce research burden in a neurodegenerative population and assessing participant adherence: a randomized clinical trial and two observational studies. JMIR Mhealth Uhealth. 2022;10:e31877.
  • van Eijk RPA, Beelen A, Kruitwagen ET, Murray D, Radakovic R, Hobson E, et al. A road map for remote digital health technology for motor neuron disease. J Med Internet Res. 2021;23:e28766.

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