PHYSICAL ACTIVITY, QUALITY OF LIFE, FATIGUE AND FUNCTION IN MYASTHENIA GRAVIS

Researchers at the School of Health and Rehabilitation Sciences (SHRS) at the University of Queensland are seeking individuals with myasthenia gravis to participate in a study investigating levels of physical activity and sitting time and their relationship with fatigue, quality of life and functional mobility. There is a substantial amount of evidence indicating that physical activity and sitting time have a significant impact on a broad range of health and wellbeing outcomes, however there is currently limited research in this area in people with MG. This study will contribute to our understanding of activity in individuals with MG and what factors might contribute to and impact on physical activity participation.

Aim: To investigate levels of physical activity and sitting time in individuals with myasthenia gravis and explore its relationship with fatigue, quality of life and functional mobility.

Type of volunteers needed:

• Individuals with myasthenia gravis aged 18 – 70 years
• Individuals able to mobilise independently with or without a walking aid (excluding wheelchairs)
• Stable symptoms for the last four weeks prior to commencing the study (can be currently receiving treatment)

What is involved?

• Completion of an online questionnaire
• 1 hour assessment of walking and mobility (at the UQ campus in St Lucia, or at a suitable clinical location convenient to you)
• Wearing two small activity monitors for 7 days during normal everyday life
• An interview exploring your views on your own physical activity and any potential barriers and facilitators to participation

HOW ACTIVE ARE YOU?

We are seeking people with myasthenia gravis (MG) to help us better understand the impact of MG on levels of physical activity and sitting time.

Participation involves completing an online survey and wearing two small, lightweight activity monitors for seven consecutive days as you go about your normal day to day life, and then answering some questions about  your activity levels.

For more information and to access the survey, scan the QR code

with your device or go to:

www.surveymonkey.com/r/MG2019SURVEY

For more information on this study, please contact:

Tahlia Alsop (Honours student)   t.alsop@uq.edu.au

Dr Sjaan Gomersall (Principal advisor)   s.gomersall1@uq.edu.au or 3365 4528

A comment from Tom who is participating in the Study

Because we are an uncommon disease getting good research information is difficult.  Without good data we are going to have difficulty getting funding for new treatments.  Good data requires studying as many patients as possible. Small numbers of participants doesn’t produce enough information to make worthwhile interpretations.

Tahlia’s study is something worthwhile and I would encourage everyone to participate.  So far she has had only 4 participants in the exercise monitoring component.

It is easy to participate.

She is very friendly.

The hour session is not strenuous or uncomfortable.

Access is easy. There is a public car park within 100m of her building.  A council bus stops just outside her building.

The monitoring devices are comfortable and unobtrusive.

There is a good cafe next door to her building.

Let's support those trying to help us.

Kind regards, Tom