Our Partnership

We have co-funded Professor David Abbott of Bristol University, to research 'Building the evidence base for end of life decision making for men with Duchenne muscular dystrophy'.

This project began in 2014 and was funded for one year.

In this project Professor David Abbott talked to 20 men with DMD to find out their views on discussions about end-of-life care. Where they should happen, who with and when. Talking about this difficult subject has been shown to help people with life-limiting conditions and this study aims to find out from those with DMD about the way to best communicate.

How Will This Help Those With DMD?

The 20 men were found by DMD Pathfinders (a user-led charity which promotes choice, control and quality of life for teenagers and adults with Duchenne muscular dystrophy) and were interviewed by Professor Abbot and psychologist Dr Helen Prescott.

The outcome of this research will be recommendations about how men with DMD would like end-of-life care discussions to take place. A report of the findings will be made available to clinicians and other health and social care professionals. A summary will also be available for those with DMD and their families.

The project was funded through the Duchenne Forum. The other members of the Duchenne Forum are MDUK, The Duchenne Research Fund, Harrison's Fund and Alex's Wish.

Professor Abbott’s article on end-of-life care in men with Duchenne muscular dystrophy has now been published and is available to download here.