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

J Neurol. 2022 Nov;269(11):6003-6013. doi: 10.1007/s00415-022-11273-x. Epub 2022 Jul 18.


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.

Keywords: Amyotrophic lateral sclerosis; Digital technology; Motor neuron disease; Patient perspective; Survey.

MeSH terms

  • Amyotrophic Lateral Sclerosis*
  • Delivery of Health Care
  • Humans
  • Monitoring, Physiologic
  • Motor Neuron Disease* / therapy
  • Surveys and Questionnaires
  • Technology