Telehealth trial for patients with motor neurone disease

Innovative new telehealth system will ensure that aids and assistance can get to patients at the right time

Patients with motor neurone disease (MND) are being offered additional support with the launch of an innovative new telehealth system.

Developed in conjunction with patients and carers, MND experts at the University of Sheffield's Sheffield Institute for Translational Neuroscience (SITraN) say the bespoke monitoring system will ensure that aids and assistance can get to patients at the right time.

We hope that the telehealth system will improve the care and support we can offer patients and their carers by enabling us to respond to problems as they arise

The system, named TiM, for ‘telehealth in motor neurone disease’, is provided in the form of an app on a tablet computer. Weekly updates on mobility and general wellbeing are sent to the patient’s specialist MND care team to swiftly identify problems and points for action.

Dr Chris McDermott, consultant neurologist at the Royal Hallamshire Hospital and mastermind behind the telehealth project, said: “We hope that the telehealth system will improve the care and support we can offer patients and their carers by enabling us to respond to problems as they arise.”

An initial trial with 40 patients will now start at the Sheffield MND Care Centre funded by a National Institute for Health Research (NIHR) fellowship to trial manager Dr Esther Hobson. This pilot study will assess how well the telehealth system works. If successful, a larger trial will follow with the aim of making the technology widely available to MND patients.

Dr Hobson said: “Patients travel from all over Yorkshire to the Sheffield MND Care Centre to receive care from specialist doctors, nurses and therapists. For many of our patients, travelling to these appointments becomes more difficult and eventually impossible as they become more unwell.”

This app has the potential to make a huge difference to people with MND, particularly those living in rural areas where travelling to hospital is very difficult and you can feel very isolated

Emily Goodall whose father suffered from MND said: “This app has the potential to make a huge difference to people with MND, particularly those living in rural areas where travelling to hospital is very difficult and you can feel very isolated.”

Patients were also closely involved in the new web resource, which provides essential guidance on the use of vital breathing support for people with MND. Non-invasive ventilation (NIV) has been shown to prolong life and improve the quality of life of MND patients whose breathing is affected. NIV delivers slightly pressured air into the lungs through a face mask to supplement patients’ own breathing.

Dr McDermott said: “Although NIV is an effective treatment, up to 40% of patients can struggle to use it. Our research identified that a group of people gave up early on because of practical issues and not fully being aware of the potential benefits of persevering.

“We invited members of the public with experience of MND and NIV to work with web designers and film-makers to create a new information resource, myNIV. The idea being that they could create something that contained all the things they wished they had known about NIV at the start to make it easier to use.”

MND is a progressive and debilitating condition that causes paralysis of muscles in the body leading to difficulty walking, moving, talking, swallowing, breathing and eventually death. While there are no effective treatments, the challenge for doctors and carers is to improve the quality of life of people affected by the disease and to ensure they get access to specialist care and support when they need it.

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