Please take a few minutes to complete a short survey to help the Canadian Spondylitis Association help you.
A co-morbidity is not a side effect.
A focus of the Canadian Spondylitis Association (CSA) in 2018 will be on highlighting and educating members about co-morbidities that are associated with spondyloarthritis. The CSA are forming partnerships to bring you the education and support that you should have. Individuals are sometimes diagnosed because of a co-morbidity or by a professional outside of rheumatology. In some cases, diagnosis is delayed due to the complexities of spondyloarthritis and its many co-morbidities.
Stand-up to spondyloarthritis! Together we can make a difference. Please take a few minutes of your time to complete a short survey to help the CSA help you.
The CSA will be updating their website with information on co-morbidities and include articles in upcoming newsletters highlighting a co-morbidity.
Getting “Patient Satisfaction” from Arthritis Health Care: What You Told ACE
In Arthritis Consumer Experts’ (ACE) first JointHealth™ insight of 2018, we share the results of three member surveys conducted at the end of 2017 and learn from you, the person with arthritis (or family member or caregiver), what your disease experiences are like and your journey through the health care system. Are you getting “patient satisfaction”?
In this issue, read about:
Living with arthritis – a personal look
Setting treatment goals and discussing therapy preferences with your health professional
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.
Participate in a new study that will use wearable activity trackers, paired with a new web application, and physical activity counselling to help you get more active!
Knee osteoarthritis (OA) is a major cause of chronic pain and disability. Physical activity can help to decrease pain and disability in joints affected by OA while benefiting your overall health.
If you are a person living with knee pain or knee OA, and interested in getting more active, we invite YOU to participate in the SuPRA study. Through participating in SuPRA you will learn how to get active with knee OA. You will be asked to attend an education session, use a Fitbit Flex activity tracker with the new web application, and receive counselling from a registered physiotherapist. The total time commitment for the study is 9 months. Enrol now to start in January 2018!
If you are interested, please fill out a 3-minute screening questionnaire.All responses will remain confidential, and you will be contacted by a research staff member within 48 hours to discuss your eligibility further.
University of British Columbia Survey: Running and knee osteoarthritis
What do the public and healthcare professionals think about the effects of running on knee joint health?
Male jogger’s leg to represent knee OA survey
This online survey should take approximately 15 minutes to complete.
A research group co-led by Drs. Michael Hunt and Jean-Francois Esculier at the University of British Columbia is currently conducting a survey investigating how people perceive the appropriateness of running for maintaining knee joint health. This online survey should take approximately 15 minutes to complete.
You may be able to participate if you:
Are aged 40 years and older (except for healthcare professionals)
Have access to the Internet to complete the survey
Speak English or French
Participation is anonymous and no information will identify you. Should you have any questions, feel free to contact Dr. Jean-Francois Esculier at email@example.com.
Here’s your chance to take a Canada-wide survey on the patient’s views on quality indicator resources for hip and knee replacement rehabilitation.
Researchers at the Centre for Hip Health and Mobility in Vancouver have developed quality indicators (QIs) for hip and knee replacement rehabilitation. Quality indicators state the quality of rehabilitation care that all patients having a joint replacement for hip or knee osteoarthritis (OA) should expect to receive. They are currently creating a ‘toolkit’ to help people like you and your families learn about these QIs and use them to: Continue reading →
The next general election in British Columbia is scheduled for May 9, 2017. What change would you want to see?
Arthritis affects 1 in 5 British Columbia residents, so healthcare to treat the more than 100 different types of the disease is extremely important to the more than 600,000 British Columbians living with the disease. Any party that wishes to become government needs to consider these constituents. To help the parties understand this, Arthritis Consumer Experts (ACE) sent a questionnaire to the candidates of the 2017 BC Provincial Election.
As part of an international network of RA patient organizations, Arthritis Consumer Experts invites you to participate in a global survey of RA patients to examine the diagnosis, treatment and care they receive for their RA. The goal of this survey is to understand, from the patient experience and perspective, how current “models of care” for rheumatoid arthritis compare between countries.
Your experience and perspective matter
As a person living with RA, sharing your experiences about the care you receive is vitally important. With your help, we can meet the study goals and develop education and information programs to improve patients’ understanding about RA models of care to enable the best treatment outcomes possible in Canada.
How you can participate
If you agree to participate, you will be asked to answer a survey questionnaire, which should take approximately 10 minutes to complete. All the information gathered during the survey will be combined to protect your privacy and anonymity.
To be eligible to participate in this survey, you must:
Be 18 years of age or older
Receive health care in Canada
Have access to the internet
Thank you for considering our request to participate in this survey. Your participation will help you and other people living with RA in your country know more about the health care they should be receiving.
RA Matters is an international project aiming to explore what matters most to people living with RA. Using online crowdsourcing to invite participants, RA Matters asks questions about relationships, activities, work and aspirations, in order to reveal the most important aspects of day-to-day life. RA Matters aims to elevate a global conversation that sheds light on what those with RA really want and – ultimately – help them live the best life possible.