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Arthritis Consumer Experts introduces their newest JointHealth™ Education course

JointHealth™ Education: Advanced Therapies for Inflammatory Arthritis 

JointHealth™ Education Advanced Therapies bannerArthritis 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.

World Autoimmune Arthritis Day – Race is on! #WAAD18

Join the “virtual” race to increase public awareness of autoimmune arthritis 

The race banner for World Autoimmune Arthritis Day #WAAD18May 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:

  1. 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
  2. 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.

To learn more about the event, please click here. Join the conversation on Facebook at Facebook.com/AIArthritisDay and Facebook.com/ACEJointHealth, and Twitter @AIArthritisDay and @ACEJointHealth by using the hashtag #WAAD18.

Ontario Election 2018: On election day, make your voice count.

On election day, make your voice count.

The general election in Ontario is scheduled for June 7, 2018. What change would you like to see in models of arthritis care? 

Ontario Election BannerArthritis 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.

The questionnaire asked the following questions: Continue reading

Tips to manage or reduce mental stress associated with your arthritis

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.

Couple on a beach with grassy foreground to represent mental illnessPlease consult your doctor to discuss your treatment options.

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World Lupus Day: Spotlight on “Doctor Mom” living with lupus

Infographic on how lupus affects anybody

Image from Lupus UK

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.

Diagnosis of lupus
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It’s National Nurses Week! Nurses play a big role in rheumatology care

On National Nurses Week, we want to thank you to all the nurses in the world!

Picture of nurses from American Nurses Association

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 feedback@jointhealth.org and tell us what you do to help patients!

Initial assessment

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

JointHealth™ insight – April 2018: What’s new in the science of arthritis?

title page for JHI April #CRArthritisIn 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
  • Juvenile arthritis
  • Spondyloarthritis and psoriatic arthritis – Advancements in diagnosis and therapy
  • Giant cell arteritis and vasculitis
  • Exercise as medicine
  • Nutrition
  • Pregnancy
  • Medication adherence
  • 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.

Arthritis Broadcast Network ranked #5 on Feedspot’s Top 20 Arthritis YouTube channels to Follow

Arthritis Broadcast Network ranked #5 on Feedspot’s Top 20 Arthritis YouTube channels to Follow

Thanks to our growing audience, Arthritis Broadcast Network (ABN) – powered by Arthritis Consumer Experts – has the most videos and views on a Canadian channel!

Feedspot Top 20 Arthritis YouTube Channel to follow badge

Arthritis Broadcast Network has been ranked #5 on the top 20 arthritis YouTube channels to follow by Feedspot. Rankings are based on the following criteria:

  • Total YouTube channel subscribers, video views, and video uploads
  • Quality and consistency of videos
  • YouTube search ranking
  • Feedspot editorial team’s objective and subjective review

On Feedspot’s list, ABN has the most videos and views on a Canadian channel – a total of 200 videos and 242,489 views!

Arthritis Broadcast Network’s channel provides information about the different types of arthritis, pain management, self-care, exercise, nutrition, models of care, patient engagement, research, and many other topics valuable to the arthritis community. Please show your support and help others living with arthritis by doing the following:

April 21: Spondyloarthritis Information Session – Live stream or in-person in Halifax

The Canadian Spondylitis Association will be hosting a Spondyloarthritis Information Session tomorrow in Halifax!

You can join in-person in Halifax or on the live stream tomorrow morning from the comfort of your home from anywhere!

A picture of the Halifax Central Library where Spondyloarthritis info session will happenIf you are attending in person, the event will take place in the BMO Community Room on the second floor of the Halifax Central Library on Spring Garden Road. Registration starts at 9:15 am.

The live stream of the event will start at approximately 9:30 am AST/8:30 am EST/5:30 am PST. To join online, click the following link: http://www.spondylitis.ca/the-latest/live-event/ 

In case you are unable to access the link above, please try: https://livestream.com/45north/events/8157608

To ensure a smooth live streaming experience, make sure you have a strong internet connection or cellular network if you are participating from your mobile devices. To ask questions during the event, email questions@spondylitis.ca

Please ensure your volume is adjusted appropriately to hear the broadcast.

Call for patient input on tapentadol hydrochloride (Nucynta) for the management of severe pain

stick man with megaphone for patient inputDo you have severe pain? 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 tapentadol hydrochloride (Nucynta) for the management of pain severe enough to require daily, continuous, long-term opioid treatment, and:

  • that is opioid-responsive; and
  • for which alternative treatment options are 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 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.

These are the questions they are asking: Continue reading