Do you have psoriatic arthritis or care for someone who does? We need your valuable input.
The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input on the manufacturer’s submission for tofacitinib (Xeljanz®) for the treatment of psoriatic arthritis (PsA) when the response to previous disease-modifying anti-rheumatic drug (DMARD) therapy has been inadequate.
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 groups, like Arthritis Consumer Experts (ACE). We would like to gather your views and share them with the CDR.
Arthritis Consumer Experts (ACE) is excited to host its inaugural ABN #Greek2Street Facebook and Twitter Live event at this year’s KT Canada Scientific Meeting being held in Vancouver, BC.
Knowledge Translation (KT) is the umbrella term for all of the activities involved in moving research from the laboratory, research journal, and the academic conference into the minds of organizations and people who can put it to practical use in the clinical office to improve health outcomes.
Cheryl Koehn explains: “#Greek2Street is the magic behind good Knowledge Translation: getting language and ideas that sound like “Greek” out to the “street” so people can put scientific knowledge into action in our everyday lives.”
Using the latest social media technology, consumer-patient “reporters” will help us de-mystify the world of KT through live interviews with conference presenters and attendees that will be broadcast to the public through Facebook and Twitter. Arthritis Consumer Experts has successfully run a similar event called #CRArthritis at the Canadian Rheumatology Association and Arthritis Health Professions Annual Meetings.
Join the KT conversation online at the Arthritis Broadcast Network (ABN) Facebook page or Twitter (@ArthritisNetwrk) feed using #Greek2Street. Interviews will take place from Thursday, June 7th until Friday, June 8th. Like, share and retweet the live interviews, send us your comments or questions through Facebook and Twitter during the interviews. A reminder that the interviews remain on the ABN Facebook Page and will be made available on the ABN YouTube channel under “KT Canada: ABN #Greek2Street Facebook and Twitter Live 2018“.
The general election in Ontario is scheduled for June 7, 2018. What have party leaders and candidates said about arthritis care in Ontario?
Arthritis is a chronic disease that has a devastating and debilitating effect on the lives of more than 6 million Canadians and more than two million Ontario residents. Provincial policy directly impacts the lives of those living with arthritis and their families. The next Ontario provincial government must acknowledge the gaps in arthritis care and offer some solutions to the pressing issues facing people living with arthritis. To learn more about arthritis in Ontario visit our ON Election 2018 page.
On June 7th make your voice count. Arthritis needs to be heard and this can only be achieved through individuals exercising their right to vote to make positive changes in provincial arthritis care.
Arthritis Consumer Experts (ACE) sent a questionnaire to the party leaders and candidates of the 2018 Ontario Provincial Election, asking for their comments and promises on the following subjects:
models of care
Aboriginal arthritis care
reimbursement for inflammatory arthritis medications
flexible work arrangements
Over the past month, ACE collected Party and individual candidate’s responses. Responses have been posted on the ON Election 2018 section of ACE’s website, and we will continue to post responses as we receive them, up until the day of the election.
See what party leaders and candidates have said about issues related to arthritis in Ontario in order to make an informed vote for improving arthritis prevention, treatment, and care in Ontario.
If you have comments, questions, or concerns about any of the answers provided by candidates or party leaders, please take the time to contact the parties directly. Please click here to view the contact information for the registered political parties in Ontario.
Did their responses help you decide how you will vote? Tell us what you think of their answers. Please contact us by email.
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.
Join the “virtual” race to increase public awareness of autoimmune arthritis
May 20th is World Autoimmune Arthritis Day (WAAD). The International Foundation for Autoimmune Arthritis established this commemorative date back in 2012. The virtual event unites dozen of nonprofits, advocates, and experts from around the world to provide educational and awareness information to autoimmune arthritis patients, their supporters, and the general public.
Participants and partner organizations will participate in a virtual global race by sharing organizational websites and resources via social media posts. WAAD is a 47-hour event hosted on May 20th for the duration of all Time Zones (May 19th 6am EST – May 21st 5am EST).
This year, the goal is to achieve 100,000 virtual miles as a community. Each “like” or “share” on Facebook posts and Twitter tweets equals 1 “awareness mile”. Each “like” or “share” on awareness poster or video posts will earn 10 “awareness miles”. Team ACE will be leading two event with the goal to drive 50 “awareness miles” through Facebook and Twitter:
Team ACE Twitter Poll – ACE will be asking survey questions about arthritis self-care and management. Answers will be summarized and reported out at the end of the campaign. #ACETwitterPoll
Team ACE Facebook Photo Blog – In marketing, it is documented that the human brain can process images up to 60,000 times faster than words. ACE will share pictures, accompanied by a simple text, that represents life with arthritis. #ACEPhotoBlog
You can participate online on Facebook and Twitter and follow the event’s hashtag #WAAD18. On race day, help Team ACE win the autoimmune arthritis awareness race:
The information and resources provided by ACE during #WAAD18 will help people understand the effects of autoimmune arthritis on patients and their caregivers, the economy, and the healthcare system. Patients will learn how to practice self-care at home and at work, such as learning how to exercise and manage pain and stress. Lastly, patients will be able to have meaningful conversations with their health care team members and determine the best treatment possible.
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.
According to the “Psychological well-being among US adults with arthritis and the unmet need for mental health care” published in the US National Library of Medicine National Institutes of Health, the prevalence of mental health conditions such as depression, anxiety, and serious psychological distress (SPD; a nonspecific indicator of mental health problems) is higher among adults with arthritis compared to the general population.
The study finds that in individuals with arthritis, mental health issues interact with other health conditions and symptoms of arthritis (e.g., pain, fatigue, and disability) such that a decline in one area can directly or indirectly affect the others. Mental health issues can increase the severity of disability, interfere with disease management, and increase disease severity and mortality. Providing mental health support for arthritis patients can improve their overall wellbeing. It has been documented that treating depression can improve medication adherence, and improve both psychological and physical outcomes for patients.
An important strategy for reducing the pain of arthritis is treating your depression. Two approaches can be used, non-pharmacological and pharmacological, together or individually.
Separate from improving mood, antidepressants have been shown to reduce pain in many different chronic conditions, including arthritis, and they work even when depression is not a factor. How these drugs work to reduce pain is not fully understood, but may have to do with improving sleep, relaxing muscles, or increasing neurotransmitters in the spinal cord that are responsible for lessening pain signals.
Please consult your doctor to discuss your treatment options.
Lupus is the name given to a group of chronic immune diseases. It affects about 15,000 Canadians-approximately one in 2000.
Systemic lupus erythematosus (SLE) occurs when the body’s immune system begins to malfunction and attack healthy tissue in various parts of the body, causing inflammation and damage. Tissues affected can include the skin, joints, muscles, kidneys, lungs, heart, blood vessels, and brain.
Like many other forms of arthritis, lupus occurs more commonly in women than in men-women develop lupus approximately ten times more often than men do. While it can strike at any age, it tends to occur most often between the ages of 15 and 45.
While the exact cause or causes of lupus remain unknown, there are a number of factors which researchers believe may trigger the disease, either alone or in combination with one another. These include genetics, hormones, certain types of antibiotics and other medications, prolonged and severe stress, viruses, and sun exposure.
On National Nurses Week, we want to thank you to all the nurses in the world!
Picture of nurses from American Nurses Association
Nurses play a major multidisciplinary role in health education and management of arthritis in the community. Patients living with extensive joint damage need ongoing treatment, care, and monitoring, along with motivation and instructions to adhere to prescribed drug therapies. The best way to do so is through a multidisciplinary approach where a varied healthcare team is made available to the patient. This team may include a rheumatologist, rheumatology nurse, registered nurse, pharmacist, physical therapist, occupational therapist, podiatrist, physician assistant, social worker, dietician, and counsellor. To ensure optimal physical, psychological, and social functioning and quality of life, the team provides education and support based on the patient’s goals.
Nurses can help patients manage and coordinate the plan of care established by their rheumatologist. We have outlined the role of the nurse in the disease journey below. Are you a nurse practitioner? Email us at firstname.lastname@example.org and tell us what you do to help patients!
During the initial assessment, a nurse can help alleviate a patient’s anxiety, anger, frustration, and depression by establishing a therapeutic relationship with the patient and his or her caregiver. Nurses can also assess the patient and caregiver’s understanding of the disease and its management, and evaluate their physical, emotional, and psychological well-being. Continue reading →