Experience of transition to adult care for young people with neuromuscular disorders

What is the study about?

Young people with neuromuscular disorders are transitioned to adult medical and allied health services, between the ages of 16 and 18 years. This can be a difficult time for the young people. We would like to investigate the experiences of transition to adult care. This information will help us to improve our services in the future.


The aims of the study are to identify:

1.    How transition to adult care was conducted for you

2.    How effective was the handover of all the relevant medical and social issues

3.    How closely you are followed up by adult services

4.    Any problems you had with the current model of transition, and your suggestions for improvement in the future.



1.   Young people with neuromuscular disorders and their carers, who live in NSW and have been transitioned to adult care within the past 10 years.

2.   Carers of a young person with a neuromuscular disorder, who transitioned to adult care in the past 10 years but has subsequently died, are also invited to participate in this study.


If you have any questions about this study, please contact. 

 Royal North Shore Hospital – Dr Helen Young (Chief Investigator)  on 9926 7111 or by email on helen.young@health.nsw.gov.au

 Australian Paediatric Surveillance Unit  – Dr Marie Deverell or Amy Phu on 9845 3005 or by email on apsu@chw.edu.au



The information collected  from this survey will also help us to describe transition services for neuromusclar conditions in New South Wales.  We hope to be able to use the information collected  to advocate for improved service resourcing. 

If you would like to complete the survey online, please click on the link below. The survey will take approxiamtely 10-15 mins to complete. Please note that the responses you provide in this survey are confidential and you will not be individually identified in any reports or publications. 

Click here for survey