We looked at published research measuring quality of life and wellbeing in youth with NMD. The scientific process to evaluate and summarise published research is called a systematic review. This work is now publicly available through the journal Archives of Physical Medicine and Rehabilitation. Thank you to the librarians and to Jenny, Shane, Andrew and Gail for all the help to write up what we found:

http://www.archives-pmr.org/article/S0003-9993(16)31229-1/fulltext