JointHealth™ Education: Advanced Therapies for Inflammatory Arthritis
Arthritis Consumer Experts (ACE) is excited to announce the launch of its newest on-line patient education course: JointHealth™ Education Advanced Therapies for Inflammatory Arthritis. This three-lesson course is designed to help patients living with inflammatory arthritis identify when is the appropriate time to transition from conventional synthetic disease modifying medications (csDMARDs) to an advanced therapy, such as a targeted synthetic DMARD or biologic DMARD, and what key questions to ask about how they are taken and how they work in the body.
“JointHealth™ Education was inspired by many of ACE’s members living with an inflammatory arthritis who have told us they lack the knowledge and communications skills to have full, satisfying conversations with their rheumatologists on topics such as treatment options during their appointments. We want to ensure patients have the tools to understand when they need to start thinking about a therapy change. Patients like me often wait too long to make treatment plan adjustments, such as moving to an advanced therapy,” said Cheryl Koehn, Founder and President of Arthritis Consumer Experts.
“Canadian rheumatologists have been actively discussing and pursuing ways to improve communication between patients and rheumatologists in order to work together to set treatment goals and establish a treatment plan to achieve the best possible disease outcomes. JointHealth™ Education Advanced Therapies is a great course not just for patients, but also for rheumatologists – junior and senior, alike. We need to see our patient’s experiences, needs and goals through their eyes and words,” said Kam Shojania, MD, FRCPC, Clinical Professor and Head, Division of Rheumatology, University of British Columbia, and Medical Director of the Mary Pack Arthritis Program.
The JointHealth™ Education program provides current, evidence-informed lessons, quizzes and coaching videos through a secure, on-line classroom where “students” can learn from the comfort of their own home or over the work day lunch hour. The program helps prepare patients to appropriately frame their health concerns and questions with their health care provider. Upon successful completion of a course the patient “Graduate” receives a certificate indicating they have the knowledge and communication tips needed to successfully prepare for their medical visit, talk to their healthcare provider about setting treatment goals and making an overall plan, discuss specific treatments to manage and monitor their type of arthritis.
The general election in Ontario is scheduled for June 7, 2018. What change would you like to see in models of arthritis care?
Arthritis is a chronic disease that has a devastating and debilitating effect on the lives of more than 6 million Canadians. In Ontario, 40% of people with arthritis require help with daily activities, compared to 13% of people with other chronic conditions.
More than 1.7 million people – or 1 in 8 Ontarians – are living with osteoarthritis (OA). Within a generation (30 years), it is anticipated that 1 in 4 or 4.28 million Ontarians will be living with OA and one person in Ontario will be diagnosed every 3 minutes.
Rheumatoid arthritis (RA) can occur at any age. More than 105,000 people in Ontario were living with RA. The prevalence of RA is expected to rise by 82% by 2030. In 2040, 225,000 – or 1 in 77 people in Ontario – will be living with RA; one person in Ontario will be diagnosed with RA every 53 minutes.
Ontario’s next government needs to listen and consider the needs of these constituents. Arthritis Consumer Experts (ACE) sent a questionnaire to the party leaders and candidates of the 2018 Ontario Provincial Election.
In Arthritis Consumer Experts’ (ACE) April JointHealth™ insight, we explore what “personalized and precision medicine” – the theme to this year’s Canadian Rheumatology Association Annual Meeting and Arthritis Health Professions Association Annual Meeting – means to arthritis patients and health care providers. To help you, we have prepared a curated guide to a selection of #CRArthritis interviews, outlining key points covered during the event.
Among the topics of interest to patients, the interviews provide information on:
Personalized and precision medicine
Spondyloarthritis and psoriatic arthritis – Advancements in diagnosis and therapy
Giant cell arteritis and vasculitis
Exercise as medicine
Medical marijuana and pain management
Improving access to and quality of arthritis care
New research on preventing rheumatoid arthritis
Communicating with your doctor
Teamwork and patient-centred care in arthritis Models of Care
All interviews can be accessed through YouTube, Twitter, and Facebook.
To turn on French subtitles, please adjust the YouTube settings for each interview.
Thanks to our fans and followers, Arthritis Broadcast Network’s 2018 #CRArthritis Facebook and Twitter Live event reached over 94,205 people to date!
We did it! The Arthritis Broadcast Network (ABN) #CRArthritis Facebook and Twitter Live event at the Canadian Rheumatology Association (CRA) Annual Scientific Meeting and Arthritis Health Professions Association (AHPA) Annual Meeting conducted a total of 39 interviews (7 more than last year) in a little over 48 hours. Thank you to all of our interviewers, interviewees, and online audience who participated in the event. Because of you, the #CRArthritis event have informed and educated over 94,205 people to date. We’d say that’s an unqualified success, and you were a central part of making it happen – thank you!
According to the Arthritis Foundation, almost ten percent of people with rheumatoid arthritis (RA) will also develop interstitial lung disease (ILD), or scarring of lung tissues. In addition, people living with RA are at an increased risk of developing these lung problems:
bronchiectasis (damage to the airways)
bronchiolitis obliterates (inflammation in small bronchial tubes)
pleural effusion (a buildup of fluid between the lung and chest wall)
pleurisy (fluid outside of the lung)
pulmonary fibrosis (scarring)
pulmonary hypertension (high blood pressure in the lungs)
pulmonary nodules (small growths in the lungs)
In some cases, RA can even affect the vocal cords, causing hoarseness or shortness of breath. Here are some tips from Everyday Health that may help you maintain your lung health, while living with RA: Continue reading →
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!
Rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) are types of inflammatory arthritis that causes inflammation and> deformity of the joints, and affects your immune system. Physical activity can help to decrease pain and disability in joints affected by RA and SLE while benefiting your overall health.
If you are a person living with RA or SLE, and are interested in getting more active, we invite YOU to participate in the OPAM-IA study. Through participating in the OPAM-IA study, you will learn how to get active with RA or SLE. You will be asked to attend an education session in Metro Vancouver, 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 6 months. Enrol now to start in January 2018!
If you are interested, please fill out a 2-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.
ACE has carefully monitored the research on biologic use during pregnancy in response to the many ACE members who are thinking of starting a family and have concerns about continuing their medications.
We have previously reported on the study by Dr. Mary De Vera, Assistant Professor at the University of British Columbia’s Faculty of Pharmaceutical Sciences, and her team on “Patterns of medication use before, during, and after pregnancy among women with systemic lupus erythematosus: A population-based study”.
Dr. De Vera’s team assessed the use of medications in pregnant women with lupus in British Columbia. Most pregnancy trimesters in the study were exposed to hydroxychloroquine and/or chloroquine (41 to 45% of exposed pregnancy trimesters). The research observed an increase in glucocorticosteroid (like prednisone) exposures during pregnancy, as well as post-delivery. Findings emphasized the importance of counseling women regarding childbearing decisions as well as the need for evaluation of the risk-benefit profiles of medications in pregnancy. Continue reading →
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.
ACE presenting abstract at American College of Rheumatology (ACR) Annual Meeting
Cheryl Koehn will be presenting Poster 353 on Sunday, November 5 between 9 am-11 am: Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey
The 81st American College of Rheumatology (ACR) Annual Meeting being held November 3-8 in San Diego is the world’s premiere meeting of over 12,500 rheumatologists and rheumatology health professionals, sharing the latest arthritis advances and research.
Arthritis Consumer Experts (ACE) is excited to announce that Cheryl Koehn, Founder and President of ACE, will be presenting Poster 353: Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey on Sunday, November 5 from 9am-11am at Poster Hall C. We encourage you to attend the presentation. Cheryl, as lead author of the abstract, will be discussing the results of a first ever global survey, by patients, for patients, examining what patients’ RA models of care experiences are like in their country.
The survey was conducted by the Global RA Network, founded in 2016 by RA patient organizations and leaders from 21 countries to build international relationships and work on common goals and initiatives to improve the lives of people living with RA around the world.