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.
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The University of Regina is looking for participants to evaluate an online pain self-management program, completed with Do-It-Yourself Guides, Stories and Additional Resources.
The University of Regina is seeking seniors to enroll in a research study to evaluate a pain self-management program for older adults(www.onlinetherapyuser.ca/olderadults). This program is only offered in English.
The research study is led by Thomas Hadjistavropoulos, Ph.D., Professor and Research Chair in Aging and Health, University of Regina. The purpose of this study is to explore the acceptability and effectiveness of a remotely-delivered chronic pain management program tailored to older adults, the Pain Course, when delivered in both online and printed (workbook) formats.
This program requires a 3-month commitment, as participants will have 2 months to work through the course material with a 4-week follow-up period.
Recruitment will take place across Canada and participants will be eligible for the study if they:
are a resident of Canada
are 65 years of age or older
have experienced pain for more than three months
do not have severe depression or anxiety
have regular access to a computer and the internet
Potential participants will be required to complete a preliminary screening and telephone assessment. If participants meet the inclusion criteria, they will be required to complete questionnaires at pre-treatment, post-treatment and 4-week follow-up.
The course includes 5 Core Lessons over a 2-month period, along with Do-It-Yourself (DIY) Guides, Stories and Additional Resources that will be available throughout this period.
I was recently at a meeting when a prominent doctor (from another disease area) told me that working with the arthritis community and government to improve models of care for people with arthritis was a “pipe dream”. His comment was in response to a presentation I had just given to about 50 clinical and research specialist physicians. At first, I was taken aback by his comment as I stood at the podium. Thankfully, I knew where I and Arthritis Consumer Experts (ACE) had come from over the last 18 years. We’ve been on a journey to change and save lives by volunteering and working directly with fellow patients and their families, medical and research experts and policy makers. That journey hasn’t been easy; quite the contrary. For the first five years of ACE’s existence, powerful people and organizations wanted us to “go away”. Why? Well, we upset the status quo by bringing to the forefront the experience and voices of patients – real people living with real arthritis – and by refusing to be discouraged and pushed away.
I’m telling you, our valued members, subscribers, fans and followers, this, because I want you to know that 18 years later, we’re going to keep doing what we’ve always done, and more, and we want you to continue to be a part of the journey. You are ACE. You are the experience, the pain, the struggle, the wins, the joy, the challenges we represent. We are family. Brothers and sisters in arthritis, every day, all day.
We started with one person, me. Today, we are the largest arthritis patient organization in Canada with 40,000 members and subscribers across the country. Our membership base is largest in Ontario, Quebec, British Columbia and Alberta, but we have “ACE-ers” in every single province and territory. Whether you live on the West or East coast or in Centre, what we hear from you is the consistent:
Everyday Health featured an article about Cheryl Koehn, Founder and President of Arthritis Consumer Experts. In the article, Cheryl Koehn shares her story to help others with RA learn from the mistakes she made, such as missed symptoms, diagnosis denial, and treatment delays. Below is an excerpt of the Everyday Health feature:
What Rheumatoid Arthritis Taught an Olympic Volleyball Player
Cheryl Koehn, with Molly, an Australian Labradoodle, started Arthritis Consumer Experts to help improve RA education.
Is denial a common response to a rheumatic disease diagnosis? Cheryl Koehn will be the first person to tell you that she had trouble accepting her diagnosis of rheumatoid arthritis (RA). After all, as a teenager, she was already an elite volleyball player, competing with the U.S. Junior National Team. She earned a four-year scholarship at the University of Washington in Seattle. But by age 27, just a few years after playing a competitive sport at a high level, she needed to sit in the handicapped seat on the bus to get to work. “The toughest part of accepting it,” Koehn says, “was that when I began to look into the disease, I didn’t see anyone like me.”
The Lack of Arthritis Education and Awareness
It was this experience that led Koehn to create Arthritis Consumer Experts, a Vancouver-based organization dedicated to helping those with arthritis to increase their health literacy and to understand what they are facing. “I put off treatment for about a year after my diagnosis,” Koehn says. “If my health literacy were much higher then, I probably would have made different choices.”
Join the “virtual” race to increase public awareness of autoimmune arthritis
May 20 is World Autoimmune Arthritis Day (WAAD). The International Foundation for Autoimmune Arthritis established this commemorative date back in 2012. The virtual event unites dozens of nonprofits, advocates, and experts from around the world to provide educational and awareness information to patients, their supporters, and the general public.
Participants and partner organizations will participate in a virtual global race where they will visit social media and organizational websites and resources. WAAD is hosted on May 20th for the duration of all Time Zones (May 19th 6am EST – May 21st 5am EST). You can participate online on Facebook and Twitter and follow the event’s hashtag #WAAD17. On race day, help Team ACEwin the race and spread awareness:
In honour of Lupus Awareness Month, the Arthritis Broadcast Network is doing a throwback coverage on lupus. The coverage highlights Arthritis Research Canada and Arthritis Consumer Experts’ coverage of the 9th International Congress on Systemic Lupus Erythematous, Vancouver 2010 (“Lupus 2010”).The event was held in Vancouver, British Columbia, Canada in June, 2010. Hundreds of world leading researchers, healthcare professionals, and individuals living with systemic lupus erythematosus (SLE) learned about the current state of the science in SLE and future opportunities in lupus research, education and care.
In 2008, a rheumatology workforce analysis report published by the American College of Rheumatology Workforce Study Advisory Group concluded:
Based on assessment of supply and demand under current scenarios, the demand for rheumatologists is expected to exceed supply in the coming decades. Strategies for the profession to adapt to this changing health care landscape include increasing the number of fellows each year, utilizing physician assistants and nurse practitioners in greater numbers, and improving practice efficiency.
Fast forward to 2015
The 2015 ACR/ARHP Workforce Study of Rheumatology Specialists in the United States projects a shortage of 3,845 rheumatologists in the U.S. by 2025, an increase from the 2005 ACR Workforce Study, which projected a shortage of 2,576 rheumatologists. Reasons for the shortage include: Continue reading →
Juvenile arthritis strikes up to three in 1000 children in B.C. and is one of the most common chronic diseases among children. Cassie and Friends’ Kids on the Block, an educational puppet troupe, is spreading awareness about juvenile arthritis at elementary schools like the one Sarika Adriaanse attends in Vernon. The aim is to help children understand arthritis. With the aid of a $2,500 grant from Telus’ Community Board, the performance will visit several other interior school boards.