Trial Identifier: ISRCTN26675465
Dr Esther Hobson
NIHR Doctoral Research Fellow
385a Glossop Road
Tel: (0114) 2222260
Fax: (0114) 2222290
Sheffield Teaching Hospitals NHS Foundation Trust
11 Broomfield Road
Tel: (0114) 2265942
Telehealth in Motor Neurone Disease: A single centre, randomised controlled feasibility and pilot study of the use of the TiM telehealth system to deliver highly specialised care in Motor Neurone Disease, at a distance
Motor neurone disease is a rare but debilitating neurological condition that causes paralysis of the body’s muscles leading to severe disability and eventually death. Patients often struggle to travel the long distances to specialist clinics to receive the care they require whilst this expert care is often unavailable in the community. Telehealth has the potential to enable a specialist team to monitor the health and wellbeing of patients and their carers whilst they are at home. This could improve the patient's health, improve the quality of life of both patients and their carers, and lead to more effective use of health resources.
This project is also looking at how patients use technology within their own homes and is conducting a UK survey of people affected by MND. Find out more and fill in the survey.
The TiM telehealth system is a system through which patients and their carers can enter data about their conditon on a weekly basis. Their answers are automatically analysed and are available to their MND team. The team are automatically alerted to a change in their condition. The system involves using an Android app on a tablet computer. This relays data via 3G mobile signal to the internet and stored on a server after analysis. The tablet computer also provides education and feedback
Dr Chris McDermott, consultant neurologist at the Sheffield MND Care Centre conceived the idea and developed the system: “We hope that the TiM system will improve the care and support we can offer patients and their carers by enabling us to respond to problems as they arise.” Emily Goodall, a member of the Sheffield Motor Neurone Disorders Research Advisory Group, who represent patients and their families suffering from MND said: “This app has the potential to make a huge difference to patients with MND, particularly those living in rural areas where travelling to hospital is very difficult and you can feel very isolated.”
The TiM system uses a touch screen tablet computer to ask a series of questions about patients’ and carers’ current condition. The information will be sent back to Sheffield for analysis.
In order to understand how the TiM system could work a randomised controlled pilot study will be conducted. It will involve 40 patients who are cared for by the Sheffield Motor Neurone Disease care centre and their main informal carer. Half of the participants will use the telehealth system for a minimum of six months and maximum of eighteen months and information will be collected from patients, carers and their care team. This will include collecting clinical outcome measures, health resource use and the opinions and experience of using the system. All participants will continue to receive their usual care.
This is a pilot study. It aims to determine the feasibility and acceptability of the telehealth system to patients, carers and their health care providers. If this pilot study is successful a larger study is planned to determine whether the TIM system could be effective in large numbers of patients. The pilot study will help determine how a larger trial could successfully evaluate the clinical and cost-effectiveness of the system.
Patients with MND who are under the care of the MND clinic in Sheffield will be invited by letter to participate. Recruitment will commence in September 2014 and the study is expected to last 18 months.
The development of the TiM system has been in collaboration with clinicians at SITraN and Sheffield Teaching Hospitals with an industry partner Abbott Pharmaceuticals. Support has also been received from patients and carers, Devices for Dignity and the University of Sheffield Telehealth and Care Technologies group. The National Institute for Health Research (NIHR) has funded the trial through the Doctoral Research Fellowship scheme. The Motor Neurone Disease Association has also provided funding support.
Hobson, Esther V, Wendy O Baird, Rebecca Partridge, Cindy L Cooper, Susan Mawson, Ann Quinn, Pamela J Shaw, Walsh Theresa, Daniel Wolstenholme, and Christopher J McDermott. “The TiM System: Developing a Novel Telehealth Service to Improve Access to Specialist Care in Motor Neurone Disease Using User-Centered Design.” Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 0, no. 0 (February 22, 2018): 1–11. doi:10.1080/21678421.2018.1440408.
Hobson, Esther V, Wendy O Baird, Cindy L Cooper, Sue Mawson, Pamela J Shaw, and Christopher J McDermott. “Using Technology to Improve Access to Specialist Care in Amyotrophic Lateral Sclerosis: a Systematic Review..” Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 17, no. 5 (July 2016): 313–24.
Hobson, Esther V, Saima Fazal, Pamela J Shaw, and Christopher J McDermott. “‘Anything That Makes Life’s Journey Better.’ Exploring the Use of Digital Technology by People Living with Motor Neurone Disease.” Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 34 (February 20, 2017): 1–10.