Arthritis Australia launches ground-breaking Rheumatoid Arthritis patient-support website

Arthritis Australia, in partnership with the Australian Rheumatology Association, has launched a new online rheumatoid arthritis patient-support website. The free MyRA website provides individually tailored information designed to help people seize control and become active participants in their journey with the disease.

More than 450,000 Australians live with rheumatoid arthritis (RA), an autoimmune disease that causes pain and swelling of the joints. The disease can strike at any age, including during childhood, and can greatly impact on a person’s wellbeing. However, with early diagnosis and the right treatment, most people with rheumatoid arthritis can lead full and active lives.

“Everyone’s journey with rheumatoid arthritis is different. Some people are at the starting point, while others have been living with arthritis for decades,” says Andrew Mills, CEO of Arthritis Australia. “Prior to this program, we found many people were either using ‘doctor google’ to make important decisions based on incorrect, irrelevant or alarming information, joining online forums without independent and trusted moderation, or joining programs that may only be suitable at a particular point in time due to the medication they are using.”

“Responding to what people living with rheumatoid arthritis were telling us, Arthritis Australia embarked on the journey to develop a gold standard patient-support website that could meet each person where they are at on their journey, providing them with relevant, tailored, evidence-based information regardless of what drug they are currently on or how long they have been diagnosed with rheumatoid arthritis,” continued Mr Mills.

The MyRA website was developed in collaboration with state and territory-based arthritis organisations, informed also by respected international arthritis peers. The end result is a digital platform that provides a holistic patient-support system. It covers topics such as symptoms, risks, treatment options, diet, exercise, day to day tips, support services and how to manage pain, mental health and fatigue. It looks at how to build good relationships with healthcare teams and provides updates about COVID-19. The website also links through to the National Arthritis Infoline.

“A fantastic feature is the way the online patient-support website then links people with arthritis organisations nationwide and relevant local information, educational events, fitness activities, webinars and other support services, including trained health educators,” continued Mr Mills.

Wendy Favorito has lived with rheumatoid arthritis since she was six years old and participated in the trials of the website.

“The landscape is constantly changing for the management of inflammatory arthritis. It is fantastic that there is now a one-stop-shop for robust and reliable information. Knowing that both Arthritis Australia and the Australian Rheumatology Association back this website will give people like myself the confidence to know that the information is credible and up-to-date says Ms Favorito.

Rheumatologist, Prof. Susanna Proudman says the holistic approach is a game-changer for people with rheumatoid arthritis.

“Patients may only have face to face time with their rheumatologist for a few hours each year and GPs can’t be expected to cover everything outside of that. The MyRA website provides a holistic resource, trusted support and will save people a lot of time going down rabbit holes that they don’t need to that may offer unproven or even unsafe advice. People with rheumatoid arthritis can benefit from the wisdom of others living with rheumatoid arthritis who have already been down the same path.”

The project was independently developed by Arthritis Australia for Australian users with unrestricted, educational grants from sponsors, requiring an ambitious whole-of-health-sector approach.

“A coordinated approach, thorough consultation with consumers and pooled funding delivers what people living with rheumatoid arthritis have told us they need. Information is independent and people will still receive relevant medication information, but that information will change if they change medication,” continued Mr Mills. “To our knowledge, this approach is the first of its kind – the combination of a centralised program and funding, created with support from multiple countries, to provide information that is indexed to a patient’s point in their disease journey and integrates drug-specific support.”

Prof. Catherine Hill, President of the Australian Rheumatology Association, says “We are proud to endorse this ground-breaking initiative that has been achieved by our two trusted organisations working together to address gaps in the rheumatoid arthritis patient experience. By providing people with quality information about rheumatoid arthritis, some simple management skills and the opportunity to share the experience of others, we can help everyone live a better life with rheumatoid arthritis.”

More information can be found at: https://myra.org.au

National Arthritis Infoline: 1800 011 041

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Distributed by Lanham Media on behalf of Arthritis Australia Media contact: Fleur Townley | [email protected]| 0405 278 758| www.lanhammedia.com.au

About Arthritis Australia

Arthritis Australia is the peak arthritis organisation in Australia and we work in collaboration with arthritis organisations in the ACT, New South Wales, Northern Territory, Queensland, South Australia, Tasmania and Western Australia. Arthritis Australia provides support and information to people with arthritis as well as their families and friends. The organisation promotes awareness of the challenges facing people with arthritis to the community and to leaders in business, industry, and government. In addition, Arthritis Australia funds research into potential causes and possible cures as well as better ways to live with arthritis. www.arthritisaustralia.com.au

Notes for Editors

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Key Arthritis Stats and Facts

• About 458,000 Australians (1.9% of the total population) have rheumatoid arthritis
• In Australia, rheumatoid arthritis accounted for 15% of the total burden of disease due to musculoskeletal conditions in 2015.
• In 2016–17, there were 13,213 hospitalisations for rheumatoid arthritis, a rate of 54 per 100,000 population
• Additionally, there is an economic impact of rheumatoid arthritis. In 2015–16, Rheumatoid arthritis cost the Australian health system an estimated $1.2 billion, representing 9.6% of disease expenditure on Musculoskeletal conditions and 1% of total disease expenditure.
• Rates of rheumatoid arthritis are slightly higher for women (2.3%) than men (1.5%).
• Rheumatoid arthritis is a significant cause of physical disability. Functional limitations arrive soon after the onset of the disease and worsen with time. Joint damage in the wrist is reported as the cause of most severe limitation even in the early stages of rheumatoid arthritis.
• In 2017–18, more than 2 in 3 people with rheumatoid arthritis aged 45 and over (68%) experienced ‘moderate’ to ‘very severe’ pain in the last 4 weeks. People with rheumatoid arthritis were 3.1 times as likely to have severe or very severe bodily pain in the last 4 weeks (30%) compared with those without the condition (10%).
• People with rheumatoid arthritis are more likely to suffer from anxiety, depression and low self-esteem. Rheumatoid arthritis can affect a person’s ability to participate in work, hobbies and social and daily activities. Combined with the chronic pain associated with rheumatoid arthritis, this can lead to mental health issues including depression, anxiety, feelings of helplessness and poor self-esteem.
• People aged 45 and over with rheumatoid arthritis were 2.5 times as likely to describe very high levels of psychological distress (11%) compared with those without the condition (4.3%)—according to the 2017–18 NHS.
• People with rheumatoid arthritis often have other chronic conditions, or ‘comorbidities’ (2 or more health conditions occurring at the same time). According to self-reported data from the ABS NHS 2017–18, among people aged 45 and over with rheumatoid arthritis:
  • 36% also had back problems compared with 25% of people without rheumatoid arthritis
  • 33% also had mental and behavioural conditions compared with 21% of people without rheumatoid arthritis
  • 22% also had heart, stroke and vascular disease compared with 11% of people without rheumatoid arthritis (Figure 4)