The voice of our clinicians: the use of technologies in the treatment and management of MS and ALS
Prof. Mamede de Carvalho, Instituto De Medicina Molecular João Lobo Antunes (PT) - Unit Leader, MCarvalho Unit and Prof. Roberto Bergamaschi, IRCCS Mondino Foundation Pavia (IT), Director of the Multiple Sclerosis Research Centre.
Two of the project’s clinicians, Mamede de Carvalho for Amyotrophic Lateral Sclerosis (ALS) and Roberto Bergamaschi for Multiple Sclerosis (MS), have been interviewed to have their vision on the use of digital tools for the treatment and management of MS and ALS patients and to know more about their previous experiences in using technologies in clinical practice.
> Do you have experience in using mobile apps. (like Cleo, Emilyn, Lumosity, BelongMS...) or other digital/software tools for remote tracking/monitoring the patients and management/treatment of ALS ?
Mamede: No. We do not have experience in using apps for monitoring patients and supporting clinical decisions. Indeed, this step would require permission by the National Drug Agency (INFARMED), which has the legal role of approving apps and devices for clinical use. Certainly, we have approached this issue in exploratory studies in the past but not yet in an implementation phase.
Roberto: We don’t have a particularly extensive experience on MS-applied devices/tools. Moreover, the few that we have experienced were either too coarse or difficult for the patient to use. Precisely for this reason, the development of agile and reliable devices within the BRAINTEASER project would be desirable.
> What crucial features do you think the existing apps and tools are missing that would eventually lead to wider adoption in practice ?
Mamede: Apps and devices should be appropriate for routine use (feasibility), for example low cost, simple for most patients (user-friendly) and well-tolerated. Moreover, they should be easy to find and replace in case of damage (availability). Finally, apps and devices should provide results that are clinically relevant, providing information determining different clinical actions to improve patient's condition.
Roberto: The few app/devices that we had the opportunity to test did not include measures sensitive and specific enough to guarantee a complete assessment of the patients' situations. Moreover, some of them were designed in such a way that the presence of daily reminders for patients to perform specific activities were interfering too much with their daily life, and as such they were more detrimental than useful.
> Do you have experience in using wearable sensing devices (wristbands, smartwatches...) in remote patient monitoring and tracking ALS disease progression and vital parameters?
Mamede: Yes. ALS patients on respiratory care or requiring respiratory evaluation, frequently use at their home specific sensors to monitor ventilatory function, in particular oximetry and, sometimes, capnography to measure blood CO2 saturation. This data is transmitted to their medical doctors dealing with respiratory problems. However, this information is unidirectional and it measures only one vital parameter.
Roberto: No, we don’t. We actually believe that the use of wearable sensing devices is of potential great interest as it allows the clinicians a longitudinal monitoring of multidimensional variables in a continuous way, while minimising the risk of data loss. They are simply not integrated in the clinical practice yet, but we think that they will represent a valid tool that, integrated with the existing more traditional approaches, will improve clinical care and patients’ quality of life.