Patient perspectives on digital healthcare technology in care and clinical trials for motor neuron disease : an international survey

Abstract

Introduction

To capture the patient’s attitude toward remote monitoring of motor neuron disease (MND) in care and clinical trials, and their concerns and preferences regarding the use of digital technology.

Methods

We performed an international multi-centre survey study in three MND clinics in The Netherlands, the United Kingdom, and Australia. The survey was co-developed by investigators and patients with MND, and sent to patients by e-mail or postal-mail. The main topics included: patients’ attitude towards remote care, participating in decentralized clinical trials, and preferences for and concerns with digital technology use.

Results

In total, 332 patients with MND participated. A majority of patients indicated they would be happy to self-monitor their health from home (69%), be remotely monitored by a multidisciplinary care team (75%), and would be willing to participate in clinical trials from home (65%). Patients considered respiratory function and muscle strength most valuable for home-monitoring. The majority of patients considered the use of at least three devices/apps (75%) once a week (61%) to be acceptable for home-monitoring. Fifteen percent of patients indicated they would not wish to perform home-measurements; reporting concerns about the burden and distress of home-monitoring, privacy and data security.

Conclusion

Most patients with MND exhibited a positive attitude toward the use of digital technology in both care and clinical trial settings. A subgroup of patients reported concerns with home-monitoring, which should be addressed in order to improve widespread adoption of remote digital technology in clinical MND care.

Metadata

Authors/Creators:	Helleman, J. Johnson, B. Holdom, C. Hobson, E. https://orcid.org/0000-0002-8497-2338 Murray, D. Steyn, F.J. Ngo, S.T. Henders, A. Lokeshappa, M.B. Visser-Meily, J.M.A. van den Berg, L.H. Hardiman, O. Beelen, A. McDermott, C. https://orcid.org/0000-0002-1269-9053 van Eijk, R.P.A.
Copyright, Publisher and Additional Information:	© 2022 The Author(s). This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
Keywords:	Motor neuron disease; Amyotrophic lateral sclerosis; Digital technology; Survey; Patient perspective
Dates:	Accepted: 5 July 2022 Published (online): 18 July 2022 Published: November 2022
Institution:	The University of Sheffield
Academic Units:	The University of Sheffield > Sheffield Teaching Hospitals
Depositing User:	Symplectic Sheffield
Date Deposited:	25 Aug 2022 12:01
Last Modified:	18 Oct 2022 12:45
Status:	Published
Publisher:	Springer Nature
Refereed:	Yes
Identification Number:	https://doi.org/10.1007/s00415-022-11273-x

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Patient perspectives on digital healthcare technology in care and clinical trials for motor neuron disease : an international survey

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