Motor Neurone Disease

Motor neurone disease (MND) is an extremely debilitating condition which progressively damages parts of the nervous system, causing muscles to waste and weaken. There is no cure for MND and although the disease will progress, symptoms can be managed to help reduce the impact it has on a patient’s daily life. MyPathway enables MND centres to manage their patients digitally. This allows clinicians to provide the right level of specialist care remotely as they can review health questionnaire response data, test results and patient progress via the clinical portal. Providing remote care not only benefits the clinicians but it also benefits the patients, who often travel a long distance for their appointment at specialist centres, which in turn can negatively affect their health.

Whilst remote monitoring has been accelerated by COVID-19, it could herald a long-term change in how the NHS interacts with patients. Specialised remote monitoring is making a real difference to those living with MND and is ensuring that they will continue to receive the highest quality of care.

TiM on MyPathway

Telehealth in Motor Neurone Disease (TiM) is a digital platform that enables healthcare professionals to remotely monitor and support patients with MND. TiM on MyPathway is a result of the partnership between ADI, the University of Sheffield’s Institute for Translational Research (SITraN) and Sheffield Teaching Hospital with funding provided by MND Scotland.

TiM on MyPathway allows patients to connect with their healthcare provider seamlessly and securely through a web browser or mobile app, without the need for a physical visit which not only saves the patient time in travel but it also safer for the patient. The app enables MND patients to answer a series of digital questionnaires on a weekly basis. PHQ-9 (The Patient Health Questionnaire) and GAD-7 (Generalised Anxiety Disorder) are used to monitor the patients mental health which provides clinicians more understanding on the patients wellbeing and SNAQ (Simplified Nutritional Appetite Questionnaire) assesses patient appetite. Using digital questionnaires saves clinicians time and allows them to assess the data in real time. Via the app patients also have access to advice and support resources on how to manage their condition along with troubleshooting information for medical equipment to help them manage their symptoms at home. There are many aspects of the app that supports self-management, however patients can also attend virtual appointments with their consultant. These appointments enable patient and clinician engagement and are often more productive and beneficial as patient data has already been gathered via the digital questionnaires.

The MyPathway clinical portal provides clinicians with real time questionnaire response data enabling them to monitor their patient’s progress, action interventions and stay connected with their patients remotely. Patients enter the majority of the information themselves and therefore there is less of a burden on staff, not only saving admin time but allowing clinicians to direct resources to where they are most needed.