The Needs Analysis of Australians with MS Report was commissioned by MS Research Australia in consultation with MS Australia and the state MS organisations, to help in identifying and highlighting the unmet needs of Australians with MS and inform the development and delivery of effective services.
Some of the findings of the Report have recently been published in the international peer-reviewed medical literature via the Journal of Psychosomatic Research. The paper focuses on the psychological, education and peer support needs of people living with MS. Other data focusing on physical and community needs will be published separately.
Dr Lisa Melton, Research Development Manager, MS Research Australia said ‘This is an important validation of the research and also allows our international colleagues to reference and learn from the findings.’
The research was conducted via a survey, designed by Professor McCabe and implemented through the long-running MS Research Australia research platform, the Australian MS Longitudinal Study (AMSLS), which at the time was managed by Dr Rex Simmons at Canberra Hospital. The study gathered data from over 2,900 people living with MS, representing a sample of more than 12% of the total Australian MS population.
In particular, the paper highlights that people living with MS, and more so women with MS, have high needs for psychological services, including relationship and family counselling. Peer support is also highly valued by all people with MS, but greater variety in the methods of communication and timing of peer support groups is needed particularly for younger people and those more mildly affected. For people more severely affected by MS, the study showed a greater need for all education and psychological support services.
Understanding the educational, psychological and peer support needs of people with MS is important for the development and refinement of support services to assist people in managing and adjusting to living with MS. In particular, by examining the data according to age, gender, time since diagnosis and symptom severity, the study provided important information to assist service providers in responding to a person’s changing needs throughout their journey with MS.
In the time since the report was completed, peak-body MS Australia and the state MS societies, which provide services for people with MS, have been working together to analyse the outcomes and recommendations of the report, identify gaps and share best-practice service models between states.
Ms Debra Cerasa, Chief Executive Officer of MS Australia, which focusses on advocacy and communications at the national level, said, ‘The Needs Analysis report has provided an evidence base to inform MS Australia’s priorities and position statements on matters of importance to the MS community.’
If you are interested in participating in ongoing survey-based research into the practical issues faced by people living with MS you may like to read more about the Australian MS Longitudinal Study here.