Developing a decision aid that can be used by people with MND and family members to help them make informed choices around genetic testing.
Genetic testing may be available for people diagnosed with MND. Where a genetic cause of the disease has been identified, family members may be able to have a predictive genetic test to find out whether they are at an increased chance of developing the disease (also called pre-symptomatic genetic testing). Genetic testing is a complex decision and one that is unique to each individual. However, there is limited research on genetic testing and few dedicated resources to support families.
The aim of this study is to develop a decision aid. This will be an interactive resource that can be used by people with MND and family members to make informed choices around genetic testing. Decision aids present key information on the choices available and help people align this information with what is important to them. To inform the development of the decision aid, the researchers will be conducting semi-structured interviews to explore people’s experiences of making decisions around genetic testing and the information and support that would be helpful to them when making such choices.
What does taking part involve?
Taking part in the study will involve participating in an interview about genetic testing in MND. Topics covered will depend on what is important to the participant and what they feel comfortable talking about. Participants may be asked about their experiences of making decisions around genetic testing, and their views on the information and support that would be helpful for people facing such choices. Participants can choose not to answer any questions they do not want to and can pause or stop the interview at any time, without giving a reason.
Interviews can be carried out over the phone, by video call, or face-to-face in the Royal Hallamshire Hospital in Sheffield, depending on the preferences of the participant. The interview will last approximately one hour. There will be an opportunity to ask questions before taking part. Interviews will be audio recorded so that they can be transcribed by a professional transcriber (the conversation typed up). Personal details will be removed and the transcripts will be kept confidential, available only to the study team.
Participants who wish to have a face-to-face interview at the Royal Hallamshire Hospital in Sheffield will be reimbursed for travel expenses.
Who can take part?
• People with MND who have faced decisions on genetic testing
The researchers would like to talk to a range of people, including people who have decided to have genetic testing and people who have decided not to have the genetic test at present. Where people have had the genetic test, they are interested in interviewing people with positive, negative or uncertain results. People both with and without a family history of MND are invited to participate.
Participants must also be aged 18+, based in the UK and able to give consent to take part in the study.
The researchers have now completed interviews with Family members of people with MND who have faced decisions around predictive/ pre-symptomatic genetic testing.
This project is funded by the MND Association.