The MyLifeMyVoice study seeks to describe the current health and wellbeing of teenagers living with NMD in Australia and New Zealand, and explore what teenagers think and feel about engagement in their health care.
This study involves a questionnaire that can be completed with the help of a study volunteer. A few teenagers are also participating in interviews.
Patient organisations and children’s hospital Neuromuscular Clinics are sending information flyers to 14-19 year old teenagers with NMD who are wheelchair users. Teens can opt in directly to the MyLifeMyVoice study by e-mail to firstname.lastname@example.org or by sms to +61 415 301 635.
For more information, have a browse of www.mylifemyvoice.org
Vivienne Travlos, PhD student & Physiotherapist, University of Notre Dame Australia,
Assoc Prof Shane Patman, Physiotherapist, University of Notre Dame Australia
Dr Jenny Downs, Physiotherapist, Telethon Kids Institute
Dr Andrew Wilson, Respiratory Physician, Princess Margaret Hospital for Children