TY - JOUR
T1 - Patient perspectives on digital healthcare technology in care and clinical trials for motor neuron disease
T2 - an international survey
AU - Helleman, Jochem
AU - Johnson, Barbara
AU - Holdom, Cory
AU - Hobson, Esther
AU - Murray, Deirdre
AU - Steyn, Frederik J
AU - Ngo, Shyuan T
AU - Henders, Anjali
AU - Lokeshappa, Madhura B
AU - Visser-Meily, Johanna M A
AU - van den Berg, Leonard H
AU - Hardiman, Orla
AU - Beelen, Anita
AU - McDermott, Chris
AU - van Eijk, Ruben P A
N1 - Funding Information:
This study was funded by the Netherlands ALS Foundation (TRICALS-Origin) and the MyName’5 Doddie Foundation. The NIHR Sheffield BRC also supported the work in this study.
Publisher Copyright:
© 2022, The Author(s).
PY - 2022/11
Y1 - 2022/11
N2 - 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.
AB - 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.
KW - Amyotrophic lateral sclerosis
KW - Digital technology
KW - Motor neuron disease
KW - Patient perspective
KW - Survey
UR - http://www.scopus.com/inward/record.url?scp=85134546504&partnerID=8YFLogxK
U2 - 10.1007/s00415-022-11273-x
DO - 10.1007/s00415-022-11273-x
M3 - Article
C2 - 35849154
SN - 0340-5354
VL - 269
SP - 6003
EP - 6013
JO - Journal of Neurology
JF - Journal of Neurology
IS - 11
ER -