Understanding quality of life perceptions in motor neurone disease

With financial support from MSWA, people living with motor neurone disease (MND) are being recruited in Western Australia for research looking at physical, psychological and social factors affecting their quality of life.

MND is a progressive neurological condition in which the neurones (or neurons) controlling the muscles that enable us to move, speak, swallow and breathe undergo degeneration and die.

The TONiC study (Trajectories of Outcomes in Neurological Conditions) originated in the U.K. (led by Professor Carolyn Young) and is the largest study of its kind in the world. It is designed to identify quality of life aspects that are important to people diagnosed with such neurodegenerative disorders, but which may be underestimated in terms of services currently provided.

Chief Investigator, Professor Sulev Koks (head of Genetic Epidemiology Research at the Perron Institute and Murdoch University) says understanding how different factors influence quality of life and disease progression will help health professionals and carers in providing quality care.

“As well as physical degeneration and disability, people with MND can experience a wide range of other symptoms such as pain, fatigue, depression, anxiety, social withdrawal and loss of self-esteem,” Professor Koks said.

“Other factors such as worry and loss of control are typically also present.”

This collaborative research, starting with a pilot study, aims to proceed in stages to measure the social psychosocial and physiological parameters. It will combine patient-reported outcomes, clinical data and biological data.

“As well as the information obtained from participants on perceptions of quality of life, the study aims to use genetic analysis to help researchers better understand the relationships between an individual’s genome (complete set of instructions in their DNA) and the influence of genetic variations on health and disease,” Professor Koks said.

CEO Marcus Stafford AM said he was pleased to be able to support this important research.

“Although this study is initially targeting MND, I know the team have the intention to broaden the research to include people with multiple sclerosis and possibly other neurological conditions,” said Mr Stafford.

“This is fantastic. It’s great to be able to fund research that looks into a debilitating disease such as MND, and the fact the research can be extended to a wider group only makes it that much more exciting. Watch this space.”

Co-Investigators for the TONiC study are Professor Samar Aoun, head of Palliative Care Research at the Perron Institute and La Trobe University, Professor Anthony Akkari, head of Motor Neurone Disease and Genetic Therapeutics Research at the Perron Institute and Murdoch University, and Dr Abigail Pfaff, a postdoctoral scientist in the Genetic Epidemiology Research group.

For more information on the study, please contact Leanne Jiang: leanne.jiang@perron.uwa.edu.au or see the Perron Institute and MSWA Facebook pages.


L-R: Prof Sulev Koks (leading the research in WA) and Prof Carolyn Young (who designed and leads the study in the UK).