Sheffield Institute for
Translational Neuroscience

Survey

Exploring technology use in motor neurone disease

Are you living with, or have a family and friend with any form of motor neurone disease?  Would you like to take our short survey to tell us about technology use? 

survey.png Click here to take the survey which takes about 5-10 minutes. 

Motor neurone disease (MND) is a condition affecting approximately 5 000 people in the UK causing weakness in muscles, paralysis, disability, and eventually death.  Specialist multidisciplinary care improves patients’ survival and quality of life but patients’ needs are complex and they, and their carers require information and support throughout their illness.  Many people use technologies such as computers and tablet computers or assistive technologies improve their lives.  Systems are being developed that can enable specialist teams to use technology to monitor, communicate with and educate patients and their carers.

Clinicians at the Sheffield MND clinic have already developed a number of ways to use technology to improve the care for those living with MND.  These include a monitoring system (TiM: telehealth in motor neurone disease) which is currently undergoing an initial evaluation and a website providing information about breathing machines in MND.

This study aims to explore how patients and their families use technology to gain information and enhance their lives as well as the barriers and incentives to its use and their attitudes to the use of this type of technology to improve access to care and information offered to patients by specialist teams. 

This project will do this by:

The new TiM system

  • Conducting a postal survey inviting all patients and their family/friends who attend the Sheffield MND clinic.
  • Conducting an online survey of people affected by motor neurone disease throughout the UK.
  • Conducting interviews with a small number of those affected by MND (patients, family and friends) who attend the Sheffield MND clinic exploring their experiences in depth.

The results of this study will guide how future technologies are harnessed to improve MND care.  They will be relevant to other chronic diseases, where self-management plays an important role in their care.

Nature of research

This is an original research study conducted by the SITraN clinical research team including a University of Sheffield Clinical Neurology MSc student, under the supervision of the principle and co-investigators. 

Chief investigator:
Dr Chris McDermott

Reader in Neurology and Honorary Consultant Neurologist

Co-investigator:
Dr Esther Hobson
NIHR Doctoral Research Fellow

SITraN
385a Glossop Road
Sheffield
S10 2HQ
Tel:  (0114) 2222260
Fax: (0114) 2222290
@drestherhobson
e.hobson@sheffield.ac.uk

Technology use in MND