Interviewing people with MND and their caregivers to learn about their views and preferences with tests on thinking and behaviour to help inform clinical care. 

Up to a half of people with MND can experience problems to their thinking ability or behaviour. Identifying these changes through testing can help provide the right kind of support and improve the quality of life for those affected. Assessing for these problems is recommended but not always conducted.

Testing usually involves a set of questions to check thinking ability (also known as cognition) and signs of behaviour change. This test is called the Edinburgh Cognitive and Behavioural ALS Screen (ECAS).

This study aims to better understand how people with MND and caregivers view tests on thinking and behaviour, and explore their preferences with how it is conducted. The study hopes this information will inform how these symptoms are assessed, with the views of people affected by MND in mind.

This study will also explore views towards the use of digital technology for remote testing at home to make testing more accessible.

The researchers are looking to speak with people with MND and their caregivers who can share their experience with thinking and behavioural symptoms and their thoughts on the testing process for these symptoms. Interviews can take place by video link from home, or face-to-face if preferred.
 

Taking Part

What does taking part involve?

Taking part in this study involves participants being interviewed about their views on thinking and behavioural assessment in MND. The interview will take around 45-60 minutes. The interview can be conducted remotely by video call or face-to-face dependent on location.

The interview will include questions on topics such as understanding of thinking impairment in MND, attitudes towards and experience with tests on their thinking, and views on what is considered important regarding outcomes from assessment. The researchers will also show a short presentation of a digital tool that could be used for thinking and behavioural assessment in MND and will ask for thoughts regarding the use of digital technology for remote assessment at home.

The audio from interviews will be recorded with permission from the participant.

For participants wanting to be interviewed in person at the Royal Hallamshire Hospital, Sheffield, travel expenses may be offered dependent on location.

Who can take part?
  • People with MND with cognitive or behavioural symptoms, or who have undergone testing for cognitive or behavioural symptoms.
  • Partners, family members and informal carers of someone with MND with an MND care-partner who has cognitive or behavioural symptoms, or who have been involved in testing for their cognitive or behavioural symptoms
  • Able to consent to taking part in the study
  • Aged 18+

How can I take part?

To register interest in taking part in the study or find out more information, please contact the study team on [email protected] or call 0114 215 9112.

 

Study location

UK-wide

Funding

This project is funded by the University of Sheffield.