Motor neurone disease: an app a day is keeping the doctor at bay for patients
An app we've developed is improving the lives of patients living with motor neurone disease and allowing specialists to monitor their health more closely.
The innovative TiM (telehealth in motor neurone disease) system is available as an app, which patients can download on a tablet computer. Weekly updates on mobility and general wellbeing will help experts monitor a patient and their carer and identify potential issues more swiftly. It could also prevent unnecessary trips to the doctor for patients.
Consultant Neurologist and motor neurone disease (MND) specialist Dr Chris McDermott, 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."
The TiM app is already on clinical trial at the Sheffield MND Care Centre. Led by trial manager Dr Esther Hobson, the clinical study successfully recruited 40 patients and their carer living in Yorkshire, Derbyshire and Lincolnshire. Dr Hobson says: "The feedback so far has been very positive and the trial has given us the opportunity to listen to the patients’ and carers’ ideas and make improvements to the system."
MND is a progressive and debilitating disease that causes paralysis of muscles in the body leading to difficulties in walking, moving, talking, breathing and eventually death. The TiM system lets patients and carers can have their disease monitored by an expert and they can talk about what’s been happening to them. We hope this will provide a direct link to their specialist nurse who can quickly identify if something is wrong and solve what might seem small problems, before they become big problems.”
The app trial is still at the pilot stage but Dr Hobson is hoping to develop the app further and extend the trial to a larger number of patients. "Having finished the pilot study we be examining how successful the TiM system has been and using the results to tell us how we can improve the system and conduct a wider population study with an improved app. It’s also possible that this type of app would be helpful for patients suffering from other neurological diseases such as multiple sclerosis and Parkinson’s disease."
A specialist nurse who can quickly identify if something is wrong and solve what might seem small problems, before they become big problems.
Dr Esther Hobson, Trial Manager
MND patients were also part of the development of a new web resource called myNIV. The resource provides guidance on breathing support machines called non-invasive ventilation (NIV). NIV has been shown to improve the quality of life and prolong life for MND patients whose breathing is affected. It works by delivering pressurised air through a face mask to supplement patients’ own breathing.
Dr McDermott said: "Although NIV is an effective treatment, up to forty per cent 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 something that contained all the things they wished they had known about NIV at the start."
Following a positive response to the myNIV site the team are now expanding the site to include information about feeding tubes (myTube). Like myNIV the myTube site will also include videos of patients describing their own experiences as well as practical information and support.
The University's Sheffield Institute for Translational Neuroscience (SITraN) collaborated with Telehealth & Care Technologies for Long Term Conditions and Devices for Dignity Healthcare Technology Co-operative to develop the TiM system in partnership with Mylan UK. Funding for these projects was received from the National Institute for Health Research through a Doctoral Research Fellowship supporting Dr Esther Hobson and the Motor Neurone Disease Association.
myNIV and myTube were developed by SITraN in collaboration with film making company Optical Jukebox and was funded by Westfield Health and the Motor Neurone Disease Association.