Duchenne Muscular Dystrophy (DMD) is an inherited neuromuscular disease which affects boys. During the last few years there have been significant improvements in the ways DMD is managed . As a result, young men with DMD are now living longer than ever before and face a particular set of challenges as they reach adulthood. Those who are the focus of this study, aged over 15 years old, have reached, or are reaching stages of adulthood that were, at the time of their childhood, largely unexpected and unplanned. Given increases in life expectancy, young people with DMD should be looking forward to living independently, with appropriate support, as adults.
The key objectives of this study were:
1. To investigate, from their own perspectives, how the health and well-being of young men living with DMD, and that of their parents, can be maximised, particularly at the transition to adulthood.
2. To consider the potential contribution of the National Service Framework for Long Term Neurological Conditions for this group of people.
The research comprised:
1. A postal survey of parents with a son with DMD aged 15+ living in the South West, the West Midlands and the North East of England.
2. Face to face interviews with 40 young men, their parents and siblings about growing older with DMD and the issues they faced at transition.
The research was carried out by David Abbott and John Carpenter at the School for Policy Studies (University of Bristol) and in partnership wit the International Centre for Life (University of Newcastle), the Duchenne Family Support Group, the Muscular Dystrophy Campaign, and with support from Action Duchenne. The data were collected between October 2007 and November 2008.