Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, the Netherlands.
Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands.
J Neurol. 2022 Nov;269(11):6003-6013. doi: 10.1007/s00415-022-11273-x. Epub 2022 Jul 18.
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.
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.
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.
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.
为了了解患者对运动神经元病（MND）远程监测的态度，以及他们对使用数字技术的关注和偏好，我们在荷兰、英国和澳大利亚的三个 MND 诊所进行了一项国际多中心调查研究。该调查由研究人员和 MND 患者共同开发，并通过电子邮件或邮寄方式发送给患者。主要主题包括：患者对远程护理的态度、参与去中心化临床试验、对数字技术使用的偏好和担忧。
共有 332 名 MND 患者参与了研究。大多数患者表示他们愿意在家中自我监测健康状况（69%）、接受多学科护理团队的远程监测（75%），并愿意在家中参加临床试验（65%）。患者认为呼吸功能和肌肉力量最适合在家中监测。大多数患者认为每周使用至少三种设备/应用程序（75%）一次是可以接受的（61%）。有 15%的患者表示他们不愿意进行家庭测量，他们担心家庭监测会带来负担和痛苦，以及隐私和数据安全问题。
大多数 MND 患者对数字技术在护理和临床试验中的应用持积极态度。但有一小部分患者对家庭监测表示担忧，为了提高远程数字技术在临床 MND 护理中的广泛应用，需要解决这些问题。
