Share your favourite “go to websites for physical activity information and guidance
A team of health and fitness professionals, researchers and patients partners from throughout BC have worked together to create a repository of online resources to guide and motivate people living with chronic health conditions to be physically active. To help them finalize their soon to be launched Physical Activity Support Kit Initiative (PASKI) website, they’re asking people with arthritis and other chronic conditions to take their 1-minute survey. Share your favourite “go to websites” for physical activity information and guidance. Survey closes February 8, 2019.
Do you have moderate to severe rheumatoid arthritis? We need your valuable input.
The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for baricitinib (Olumiant®) for moderate to severe rheumatoid arthritis.
The CDR is part of the Canadian Agency for Drugs and Technologies in Health (CADTH). The CDR conducts objective, rigorous reviews of the clinical and cost effectiveness of drugs, and provides formulary listing recommendations to the publicly funded drug plans in Canada (except Quebec).
To help them make their recommendations, the CDR accepts input from patient organizations and groups, like Arthritis Consumer Experts (ACE). Because patient input is vitally important to government decision-making about medications, we would like to gather your views and share them with the CDR.
If you live with rheumatoid arthritis or care for someone with rheumatoid arthritis, please send us your input by Wednesday, January 16, 2019, so that we may make a submission by the January 18th deadline. Your input will be anonymous.
Please submit your input by completing the questionnaire below or contact us at firstname.lastname@example.org to provide your input or arrange for a phone interview at 604-974-1366.
The aim of this survey is to create a tool for the detection of a flare in osteoarthritis of lower limbs that occurred in the past 4 weeks.
The Outcome Measures in Rheumatology (OMERACT) and Osteoarthritis Research Society International (OARSI) are inviting you to participate in a Delphi survey of the “FLARE-OA” research project entitled “Development and validation of a tool for the detection of flare in osteoarthritis of the lower limbs”.
The “FLARE-OA” project is led by researchers at the University of Lorraine in France and aims to define flare in osteoarthritis (OA). The research team needs to know what patients think is important to consider to define OA flare. The aim of this survey is to create a tool for the detection of a flare in osteoarthritis of lower limbs that occurred on the past 4 weeks.
There is no right or wrong answer in this Delphi survey. Your responses should be based on your own experience and knowledge on the subject.
If you wish to participate in this survey, please:
Once you register, a link to the questionnaire/survey will be sent to your email account asking you to complete the FLARE-OA FIRST ROUND survey
The survey will take approximately 10 minutes to complete and should not exceed 15 minutes when connected to our site. You have the possibility to answer the survey sequentially (save and reload your ongoing answer). Please provide a response within 3 weeks.
Your participation is very important to the international research team! We thank you in advance for your kind cooperation.
The FLARE-OA international project team
Francis Guillemin (co-PI), David Hunter (co-PI), Gillian Hawker, Lyn March, Bruno Fautrel, Claudia Rutherford, Elisabeth Spitz, Camille Ricatte, Amandine Schoumacker, Laetitia Ricci-Boyer, Marita Cross, Annica Barcenilla-Wong, Joanna Makovey, Hema Umapathy, Hakima Manseur
The Osteoarthritis (OA) Information Tool for Patients will be a valuable information and education resource for people experiencing early or established hand, knee and/or hip OA.
The Arthritis Alliance of Canada, The College of Family Physicians of Canada and the Centre for Effective Practice need your help to inform the development of a new and valuable information and education resource for people experiencing early or established hand, knee and/or hip osteoarthritis. The Osteoarthritis (OA) Information Tool for Patients will assist patients in having better conversations with their doctor or other health care professional(s) by informing them about the care they can expect to receive.
The survey will take approximately 10 minutes to complete. Your participation will be anonymous. The deadline to complete the survey is Wednesday, July 25, 2018 at 5pm Pacific Standard Time.
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 →