• Charles Sturt University leads cross-institutional and interdisciplinary research collaboration to improve the lives of those with Parkinson’s disease in regional, rural and remote Australia
• The research provides valuable insights into the prevalence of Parkinson’s disease in these areas and offers potential solutions to improve the lives of those affected
• A new Parkinson’s disease clinic on the Mid North Coast uses both face-to-face and telehealth services to provide specialist neurological care for those with Parkinson’s disease

A collaborative research project led by Charles Sturt University in Port Macquarie has the potential to improve the health and care services for people living with Parkinson’s disease in rural, regional, and remote Australia.

The lead researcher of the project is Dr Shanna Fealy (pictured, inset), a postdoctoral research fellow with the Ageing Well in Regional and Rural Australia Research group at Charles Sturt in Port Macquarie.

Dr Fealy, who is relatively new to Parkinson’s disease research, said she was shocked to learn that Parkinson’s disease is the second most prevalent neurodegenerative disorder globally, after Alzheimer’s disease, and ageing populations are driving an increase in Parkinson’s disease prevalence, especially in countries like Australia.

“It is currently estimated that more than 200,000 Australians are living with Parkinson’s disease, imposing a substantial national economic burden of $9.9 billion or more,” she said.

“Given that disease prevalence is expected to increase 36 per cent by 2024 and a staggering 79 per cent increase by 2034, the significance of the collaboration cannot be overstated.”

The research project is a culmination of a cross-institutional and interdisciplinary research collaboration by industry and academia to improve the lives of those living with Parkinson’s disease in regional, rural and remote Australia.

The team involves members of Charles Sturt’s Ageing Well Research Group, the Ageing Well in Regional and Rural Australia Research group, Parkinson’s disease nurse specialists from the Mid North Coast Local Health District and Parkinson’s NSW, and specialist neurologists from the Western Sydney Local Health District.

Their research paper, ‘Exploring Parkinson’s disease prevalence in regional, rural and remote Australia: A systematic scoping review’, was recently published in the Australian Journal of Rural Health (27 October 2023).

Dr Fealy said the research identified the complexities of determining Parkinson’s disease prevalence in regional, rural and remotes areas of Australia.

“The publication sheds light on the dearth of reliable data, one of the critical missing pieces required for health service planning and distribution of economic resources,” she said.

“Understanding the geographic diversity of Parkinson’s disease prevalence is paramount for the development of effective strategies, programs, and services urgently required to support people living with Parkinson’s disease, their families and caregivers.”

Dr Fealy said the provision of Parkinson’s disease specific care is already inequitable within regional, rural and remote areas of Australia, and the team’s research has shown Parkinson’s disease prevalence rates vary substantially (0.58 to 8.5 per 1000 individuals).

“This shows there is a need for high-quality epidemiological studies to be conducted particularly to ascertain the geographic diversity of Parkinson’s disease prevalence in Australia,” she said.

Dr Fealy and colleagues are also preparing an article about their research for InSight+, the Medical Journal of Australia’s news publication for doctors.

She said there are several continuing elements of the research collaboration including, with Charles Sturt’s Associate Professor Pauletta Irwin, evaluating the recently launched regional clinic.

Members of the team are currently working with the Mid North Coast LHD and Western Sydney LHD to attract funding for the evaluation of the new hybrid specialist Parkinson’s disease clinic that uses both face-to-face and telehealth services to provide specialist neurological care for those with Parkinson’s disease in the Mid North Coast region.

The clinic in Coffs Harbour is funded by the Mid North Coast LHD to service a gap due to no specialist neurologist in the region to provide appropriate care to those with Parkinson’s disease.

The clinic is led by Mr Vincent Carroll, Parkinson’s nurse specialist, and Ms Debbie Schwebel, Mid North Coast LHD District Nurse Manager Professional Development and Governance, in conjunction with specialist neurologists Professor Victor Fung and Dr Hugo Morales-Briceno from Westmead hospital.

Charles Sturt researchers, in particular Associate Professor Rachel Rossiter and Adjunct Associate Professor Marguerite Bramble, have been instrumental in developing this research program and collaborations and imparting research skills to Mr Carroll and supporting him to complete a Charles Sturt Master of Nursing.

Dr Fealy and Professors Rossiter and Irwin are also assisting to develop research skills with Parkinson’s disease nurse specialist Ms Jody Lloyd (at Port Macquarie) to assist to develop and evaluate workshops aimed at promoting social activities to help people with Parkinson’s to deal with anxiety related to the disease pathology, diagnosis and treatments.

Professor Bramble, with Dr Wong, Dr Logan and Dr Peter Micalos, supported by funds from Parkinson’s NSW, have developed research papers (currently under review) involving the analysis of data from the Sax Institute’s ‘45 and Up Study’, which aims to further highlight the plight of people with Parkinson’s disease living in regional, rural and remote Australia.