Global RA Network present results of international survey of the rheumatoid arthritis patient care experience at ACR / ARHP Annual Meeting
The Global RA Network, founded by patient-led national arthritis organizations from 21 countries, presented the results of a global survey – “Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey”1 – investigating patient-reported experiences of rheumatoid arthritis models of care at the American College of Rheumatology’s (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Meeting.
At an ACR poster session on November 5, 2017, Cheryl Koehn, lead author of the abstract and President of Arthritis Consumer Experts, Canada’s largest patient-led arthritis organization, said: “The survey highlights the difference between best practice RA models of care and the patient’s lived experience of managing a life-long condition like RA. The survey will also advance collaboration between the RA patient organizations involved in the Global RA Network. By analyzing and interpreting the survey results for each participating country, the Global RA Network can develop education and information initiatives to raise awareness of symptoms and ensure RA patients receive the best possible care.”
The first crowd-sourced research of its kind designed by RA patients, for patients, to better learn what their care experiences are like in the their country, the global survey fielded responses from 2,690 respondents from 14 countries in Europe, the Middle East, and North and South America. The survey highlights self-reported gaps and delays in all five key elements of a standardized RA models of care, including significant delays to diagnosis and specialist access globally, delayed therapy effectiveness assessment, and additional education/information to increase the level of confidence to describe RA and improve effective self-care practice.
- On average, RA patients surveyed waited nearly two years (22 months) for an accurate diagnosis, representing a significant delay in starting treatment for these patients. This is despite the fact that current guidelines state that anyone presenting arthritis symptoms should be referred to, and seen by, a rheumatologist within six weeks.2
- In RA, the immune system attacks the cells that line the joints, causing them to become chronically inflamed, painful and swollen. Timely diagnosis, treatment and on-going management by a rheumatologist is needed to optimise treatment, manage flare-ups and limit long-term joint damage so that people with RA can maintain their quality of life and stay active and in work.
- Survey results revealed that 51% had to wait longer than three months for their first rheumatologist appointment and 33% of patients did not see their rheumatologist as frequently as recommended by guidelines.
- The survey also revealed gaps in patient awareness of disease and treatment. 49% of those surveyed did not know if they were taking a biologic treatment and 39% said they did not feel confident describing RA. Evidence shows that a better understanding of RA and treatment options can help patients to interact with rheumatologists more effectively and ultimately improve disease management.
Dr. John Esdaile, a rheumatologist and Scientific Director at Arthritis Research Canada who co-authored the study, said that the survey results are troubling: “As soon as RA starts, the joints are getting damaged. That’s why we aim for diagnosis within six weeks of the first symptoms,” he says. “In British Colombia (Canada), we’ve actually made a rule that rheumatologists will see any patient with suspected RA within two weeks – that’s how convinced we are that delay is bad for patients. And it’s not just about mobility; it’s about years of life too. A diagnosis of RA is associated with an average reduction in life expectancy of 10 years – early diagnosis and treatment can give some, if not all, of those years back.”
About Rheumatoid Arthritis
Rheumatoid arthritis is an autoimmune disease characterized by fatigue, pain, inflammation, loss of function and progressive destruction of joints. It tends to strike during the most productive years of adulthood, between the ages of 20 and 40, and is a chronic disabling condition often causing pain and deformity. More than 23 million people worldwide suffer from RA.3 More than 272,000 people are living with RA in Canada, comprising 0.9% of the adult population, which will increase to 1.3% over the next 30 years.4
Approximately three times as many women as men have the disease. Within 10 years on onset, at least 50% of patients in developed countries are unable to hold down a full-time job. For those living with RA, related inflammation in the arteries results in an increased risk of mortality.
According to research early and effective treatment by a rheumatologist may halt disease progression in people with rheumatoid arthritis. The first weeks and months following the onset of rheumatic disease symptoms are known as the “window of opportunity,” and it is crucial that patients get appropriate treatment in that time period to avoid long-term complications.5
About The Global RA Network
Founded in 2016 by RA patient organizations and leaders from 21 countries, the Global RA Network was formed to build international relationships and work on common goals and initiatives to improve the lives of people living with RA around the world. Arthritis Consumer Experts serves as the Network’s secretariat. The Network launched its website, on October 12, 2017, World Arthritis Day, which serves as the Network’s on-line meeting ground and a place to share its ongoing work and educational and informational resources with RA patients, care providers and governments.
The Global RA Network’s first initiative was to conduct a global survey on patient experiences of RA models of care. To learn more, click here.
For further information, please contact:
Vice President, Communications & Public Affairs
Arthritis Consumer Experts
Lendvoy@jointhealth.org / (604) 974-1129
1 Koehn CL, Lendvoy K, Ma Y, Li L, Hoens A, Souveton M, Esdaile JM. Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey [abstract]. Arthritis Rheumatol. 2017; 69 (suppl. 10). Abstract #353.
2 Combe B, Landewe R, Daien CI, et al. 2016 update of the EULAR recommendations for the management of early arthritis. Annals of the Rheumatic Diseases. Vol. 76, No.6, June 2017, pp 948-959
3 World Health Organisation, The Global Burden of Disease Report, (table 7, page 32) 2004,
4 Arthritis Alliance of Canada, Impact of Arthritis in Canada: Today and over the next 30 years, 2011
5 Smolen J, et al. EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2016 update. Ann Rheum Dis. 2017; 0:1-18.