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

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.

Keywords:

• Amyotrophic lateral sclerosis
• amyotrophic lateral sclerosis functional rating scale-revised
• self-assessment
• ALS-App
• remote assessment

Acknowledgements

The authors thank all the patients who gave their effort and valuable time to participate in this study. The authors wish to thank the Boris Canessa ALS Stiftung (Düsseldorf), and “Bremer ALS Stiftung” (Bremen), for co-funding this work and continuous support.

Author contributions

SSP and TM designed and conceptualized the study, analyzed and interpreted the data, and drafted the manuscript for intellectual content. DK and AM had a major role in data acquisition, interpreted the data, and revised the manuscript for intellectual content. BW had a major role in data collection and preparation of data. TG, UW, RS, SP, PW, RG, PB, ES, JCK, MB, JW, JG, AR, BI, MM, JN, YC, PK, AR, BH, FS, and CM had a major role in data acquisition and revised the manuscript for intellectual content.

Declaration of interest statement

TM and CM are founders and shareholders of the Ambulanzpartner Soziotechnologie APST GmbH, which makes the internet platform Ambulanzpartner and the mobile application “ALS-App”.

TM received consultancy fees from Biogen, Mitsubishi Tanabe, Cytokinetics, Tilray and ITF Pharma.

SP reports grants from the German Neuromuscular Society and German Israeli Foundation for scientific research and development, and speaker or consultancy fees from Biogen, Roche, Cytokinetics, Desitin Pharma, Italfarmaco, and Novartis.

JCK reports a grant from the German Neuromuscular Society and personal consulting fees from Biogen and Roche.

SSP, TG, UW, RS, DK, PW, RG, PB, ES, MB, JW, JG, AR, BI, MM, JN, YK, PK, AR, BW, BH, FS, CM, and AM reports no disclosure.

Data availability statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

Additional information

Funding

This work was co-funded by the Boris Canessa ALS Stiftung (Düsseldorf) and “Bremer ALS Stiftung” (Bremen). The project was supported by the BMBF [grant number 02K16C220].