The use of telemedicine devices and telehealth in neuromuscular diseases (World Neurology Editor’s Choice 39:2)

Expanding the use of telemedicine in NMD and developing clinically relevant but easy-to-use remote monitoring systems may improve patient access to specialized care.

Remote clinical assessment possible on smartphone

Authors: Damian, M.A., MD, FEAN, FNCS and prof. Ph.D. P. Laforet

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Patients with neuromuscular disorders (NMD) have diverse and complex care requirements, usually provided in highly specialized centers. However, they can be geographically distant, and the Covid-19 pandemic has highlighted the fragility of the system, leading to widespread suspension of diagnostic, support and rehabilitation services. Canceling routine visits and limited coverage resulted in morbidity and even death. There has been an increased demand for telehealth and remote care to help address this situation. The article describes the concept and current possibilities of using telemedicine in the care of people with NMD.

Before the Covid-19 pandemic, telemedicine was mainly used to overcome geographical challenges in sparsely populated or resource-poor regions, as well as to monitor patients with limited mobility at home. COVID-19 forced a hasty rethink of this position.

Overall, the use of telemedicine for NMD has increased during the Covid-19 pandemic, but telemonitoring has been used much less frequently.

Telemonitoring found its first application in clinical trials to optimize remote clinical assessment, but also to improve recruitment and monitoring of trials. The reliability and strong correlations between portable physical activity monitors (sensor-based systems using activity watches or wearable sensors, PAM) and neuromuscular measures have confirmed the utility of PAM as outcome measures and in long-term monitoring. Mobility data can be collected by PAM or ambient measurement systems (AMS), which passively measure movement, such as walking speed, standing speed, and arm lifting speed, when someone is within range of the sensor.

Remote monitoring of life-sustaining technologies such as home mechanical ventilation (HMV) requires regular monitoring of physiological variables (spO2, spCO2, respiratory rate) by caregivers with support from specialists and requires a continuous data link to a monitoring center for analysis and troubleshooting. It can enable remote initiation of HMV and reduce costs, and can also help predict exacerbations, enable remote interventions and adjustments. Challenges persist regarding data security and privacy, caregiver engagement and acceptance, availability of high-speed Internet, and misconceptions about the time needed.

The expansion of telemedicine for patients with NMD and the development of clinically relevant but easy-to-use remote monitoring systems have the potential to improve patient access to expert care, even in situations where direct face-to-face contact is interrupted, such as during the recent pandemic, or where limited resources or geographic location prevent patients from accessing specialist care. In the future, telemedicine may increase the availability of high-quality specialist care for patients in low-income communities that have previously had little access. Recent developments in effective treatments can also be seen as an obligation for global medicine to explore how inequalities in service delivery can be alleviated – telemedicine technology can take us a step in this direction. •

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MS Damian, MD, FEAN, FNCS, works at the Essex Cardiothoracic Centre, in Basildon, UK, and prof. P. Laforet, MD, PhD, works at the Department of Neurology, Raymond Poincaré Hospital, APHP, Garches, APHP, FHU PHENIX, Center de référence des maladies neuromusculaires Nord Est Ile-de-France in Filnemus.

Editors’ choice
World Neurology | March-April 2024, volume 39, no. 2