ArticleJournal of neurology2022
Patient perspectives on digital healthcare technology in care and clinical trials for motor neuron disease: an international survey.
Article in Journal of neurology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
17 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- A Systematic Review of Attributes Influencing Preferences for Treatments and Interventions in People With Amyotrophic Lateral Sclerosis (ALS).Muscle & nerve · 2025Pooled it
- The Use of Digital Devices to Monitor Physical Behavior in Motor Neuron Disease: Systematic Review.Journal of medical Internet research · 2025Pooled it
- Feasibility of Decentralised Response-Guided Albuminuria Monitoring to Optimise Empagliflozin and Finerenone Therapy in Type 2 Diabetes and Chronic Kidney Disease.Diabetes, obesity & metabolism · 2026Trial
- Comparison of Consumer Smartwatch and Research-Grade Accelerometer-Derived Step Counts in Amyotrophic Lateral Sclerosis.Muscle & nerve · 2026Observational
- The Values and Preferences of People Living With Motor Neurone Disease (MND): A Systematic Review and Meta-Analysis.Clinical and public health guidelines · 2026Article
- Revised: Exploring the experiences and perceived impact of using digital health technologies on individualised care among breast cancer survivors in the first year after primary treatment for breast cancer: a qualitative study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Remote Monitoring of Amyotrophic Lateral Sclerosis Using Digital Health Technologies: Shifting Toward Digitalized Care and Research?Neurology · 2025Review
- The use of digital tools in rare neurological diseases towards a new care model: a narrative review.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2024Review
- Update on recent advances in amyotrophic lateral sclerosis.Journal of neurology · 2024Review
- Cancer Patients' Perspectives and Requirements of Digital Health Technologies: A Scoping Literature Review.Cancers · 2024Article
- Non-motor symptoms in motor neuron disease: prevalence, assessment and impact.Brain communications · 2024Article
- Patient perspectives on the use of digital medical devices and health data for AI-driven personalised medicine in Parkinson's Disease.Frontiers in neurology · 2024Article
- Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights.Neurology and therapy · 2023Article
- Use of hip- versus wrist-based actigraphy for assessing functional decline and disease progression in patients with motor neuron disease.Journal of neurology · 2023Article
- Patient perspectives on digital healthcare technology in care and clinical trials for motor neuron disease: an international survey.Journal of neurology · 2022Article
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Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
15 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionTo 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.
methodsWe 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.
resultsIn 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.
conclusionMost 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.