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.
Première salle de cours en ligne en Amérique du Nord conçue pour l’éducation, la responsabilisation et l’obtention d’un diplôme par le patient arthritique d’aujourd’hui
Le comité ACE (Arthritis Consumer Experts) a annoncé aujourd’hui le lancement de son plus récent programme éducatif en ligne pour les patients: Éducation JointHealth™. Conçu pour permettre aux patients de passer du statut « d’étudiants » en matière d’arthrite à celui de « diplômés » à part entière, le programme Éducation JointHealth™ leur permet de se responsabiliser et de s’armer d’outils pour devenir les leaders de leur équipe de soins. Dans le cadre de ce lancement, le comité ACE présente le premier cours du programme, Éducation JointHealth™: La polyarthrite rhumatoïde (PR) – élaboré pour aider les patients et leurs fournisseurs de soins de santé à mieux comprendre leurs motivations respectives et les objectifs du plan de traitement et de soins du patient dans son ensemble.
« Le programme Éducation JointHealth™ a été inspiré et documenté par la participation de notre organisation à un groupe consultatif mondial qui a mené dans 16 pays une enquête sur les patients atteints de polyarthrite rhumatoïde et leurs fournisseurs de soins de santé. Les résultats ont éclairé d’une lumière nouvelle la divergence entre les besoins, les préoccupations et les peurs des patients et la vision de leurs fournisseurs de soins de santé », indique Cheryl Koehn, fondatrice et présidente du comité ACE (Arthritis Consumer Experts) et membre du Groupe consultatif mondial sur la PR.
Principaux constats de l’enquête menée par le Groupe consultatif mondial sur la PR :Continue reading →
North America’s first on-line classroom designed to educate, empower and graduate today’s modern arthritis patient
Arthritis Consumer Experts (ACE) today announced the launch of its newest on-line patient education program: JointHealth™ Education. Designed to enable arthritis patients to progress from being a “student” of arthritis to full-fledged “graduate,” JointHealth™ Education empowers and equips them to be equal partners on their health care team. As part of the launch, ACE is introducing the first course in the program – JointHealth™ Education: Rheumatoid Arthritis (RA) – to help patients and their healthcare providers better understand each other’s motivations and goals for the patient’s overall treatment and care plan.
“JointHealth™ Education was inspired by many of ACE’s members living with an inflammatory arthritis who have told us they lack the communications expertise to have full, satisfying conversations with their rheumatologists on topics such as treatment options during their clinical visits. The program is informed by our organization’s participation on a global advisory panel that conducted a survey in 16 countries of rheumatoid arthritis patients and their health care providers. The results illuminate the discord between the needs, concerns and fears of patients compared to the views of their health care providers,” said Cheryl Koehn, Founder and President of Arthritis Consumer Experts and a member of the RA Narrative Global Advisory Panel.