Le comité ACE présente son plus récent cours en ligne du programme Éducation JointHealth™

Éducation JointHealth™ : Médicaments novateurs pour le traitement de l’arthrite inflammatoire 

JHED Advanced Therapies BannerC’est avec grand plaisir que le comité ACE (Arthritis Consumer Experts) annonce aujourd’hui le lancement de son plus récent cours en ligne destiné aux patients : « Médicaments novateurs pour le traitement de l’arthrite inflammatoire » du programme d’Éducation JointHealth™. Ce cours, qui comporte trois leçons, a été conçu pour aider les patients atteints d’arthrite inflammatoire à reconnaître le moment approprié pour faire la transition d’un médicament modificateur de la maladie de synthèse traditionnel (csDMARD ou ARMM-ts) vers un médicament novateur tel qu’un ARMM (DMARD) à petite molécule cible de synthèse ou ARMM (DMARD) biologique et à identifier les questions importantes à poser sur leur administration et leur fonctionnement dans l’organisme.

« Le programme Éducation JointHealth™ a été inspiré par plusieurs membres du comité ACE atteints d’arthrite inflammatoire qui nous ont souligné que leur manque de connaissances et de compétence en communication ne leur permettait pas d’avoir des discussions satisfaisantes avec leur rhumatologue sur plusieurs sujets pendant leur consultation, notamment sur leurs options en matière de médicaments. Nous tenons à nous assurer que, le temps venu, les patients disposeront des outils nécessaires pour comprendre le processus de transition auquel ils devront réfléchir. Des patients comme moi attendent souvent trop longtemps avant de procéder à des changements dans leur plan de traitement, comme d’effectuer la transition vers des médicaments novateurs », indique Cheryl Koehn, fondatrice et présidente du comité ACE (Arthritis Consumer Experts).

« Les rhumatologues canadiens ont mené des discussions et ont activement travaillé à trouver des façons d’améliorer la communication entre les patients et leur rhumatologue pour qu’ils puissent mieux collaborer à l’établissement d’objectifs et d’un plan de traitement visant l’atteinte des meilleurs résultats possible. Le cours « Médicaments novateurs » du programme Éducation JointHealth™ est un cours précieux, non seulement pour les patients, mais également pour les rhumatologues – frais émoulus ou expérimentés. Il est important d’avoir la perspective du patient lui-même, de voir ses désirs et besoins à travers ses yeux et dans ses propres mots » affirme le docteur Kam Shojania, MD, FRCPC, directeur médical du programme Mary Pack sur l’arthrite, professeur adjoint en enseignement clinique et chef du département de rhumatologie de l’université de la Colombie-Britannique.

Le programme Éducation JointHealth™ offre du matériel actualisé et des données probantes, le tout réparti en leçons, tests questionnaires et vidéos de coaching dans un environnement sécurisé de salle de cours en ligne où « les étudiants » peuvent apprendre dans le confort de leur foyer ou pendant leur heure de lunch. Le programme contribue à préparer les patients à bien présenter à leur professionnel de la santé leurs différentes questions et préoccupations de santé. Après avoir terminé le cours avec succès, le patient devient un « diplômé » et obtient un certificat indiquant qu’il possède maintenant les connaissances et les stratégies de communication nécessaires pour bien se préparer en vue de sa consultation avec le médecin, pour discuter avec son professionnel de la santé des objectifs de traitement à fixer et d’un plan de soins global, pour parler d’options de traitement spécifiques et pour gérer et faire le suivi de la forme d’arthrite dont il est atteint.

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.

Élections Ontario 2018 : Le jour du vote, donnez du poids à votre voix.

Le jour du vote, donnez du poids à votre voix.

Une élection générale se tiendra en Ontario le 7 juin 2018. Quels sont les changements que vous souhaitez voir apporter aux modèles de soins de l’arthrite ? 

Ontario Election banner FrenchL’arthrite est une maladie chronique ayant un impact dévastateur et incapacitant sur la vie de plus de 6 millions de Canadiennes et de Canadiens. En Ontario, 40 % des personnes atteintes d’arthrite ont besoin d’aide pour les activités quotidiennes, comparativement à 13 % des personnes atteintes d’autres maladies chroniques.

Plus de 1,7 million de personnes (soit 1 personne sur 8) sont atteintes d’arthrose en Ontario. En l’espace d’une génération (d’ici 30 ans), on prévoit que 4,28 millions d’Ontariens (soit 1 personne sur 4) seront atteints d’arthrose et que toutes les 3 minutes, une personne en Ontario recevra un diagnostic d’arthrose.

La polyarthrite rhumatoïde (PR) peut se manifester à tous âges. Plus de 105 000 personnes en Ontario vivent avec la PR au quotidien. On prévoit que la prévalence de la PR grimpera de 82 % d’ici 2030. En 2040, 225 000 personnes en Ontario (soit 1 personne sur 77) seront atteintes de PR; toutes les 53 minutes, une personne en Ontario recevra un diagnostic de PR

Le prochain gouvernement de l’Ontario doit absolument être à l’écoute et prêt à combler les besoins de cette partie de ses électeurs. Le comité ACE (Arthritis Consumer Experts) a expédié un questionnaire d’enquête aux dirigeants des partis politiques et aux candidates et candidats de l’élection générale provinciale de 2018 en Ontario.

Ces questions figurent au questionnaire d’enquête : Continue reading

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

The ARThritis Soirée will be at the Fairmont Hotel Vancouver on Thursday, May 17

Arthritis Soiree for Arthritis Research CanadaHosted by Arthritis Research Canada, the ARThritis Soirée is an evening designed to attract the city’s business and community leaders, philanthropists, doctors, scientists, healthcare professionals, and those who have an appreciation of art and a desire to support arthritis research.

Research has shown art adds to one’s well-being and therefore is a great element in managing chronic diseases on a holistic level. Moreover, art adds an extra factor of excitement and depth to the Soirée each year with the introduction of a different art form.

This year’s event will take place on Thursday, May 17, 2018 at The Roof – 15th floor at Fairmont Hotel Vancouver. The evening’s entertainment will feature Colin James with a guest appearance by RBC Olympian Spencer O’Brien. Fred Lee, CBC, Vancouver Courier and The Province’s Man About Town, and Sonia Deol, Global BC Reporter and Anchor, will be co-emcees for the event. Click here to purchase tickets.

For those attending, remember to participate in the live and silent auction and raffle. The raffle will be for Tag Heuer Carrera Automatic watch, donated by Golden Tree Jewellers. Live auction items include: 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

Did you know that ankylosing spondylitis affects up to 1 in 200 people?

Picture of spine and hip areaAnkylosing spondylitis (AS) is one of the most common types of inflammatory arthritis. It is estimated to affect up to 1 in 200 people.

Ankylosing spondylitis primarily affects the spine, but can also involve the hips, knees, shoulders, and rib cage. The most common symptom of AS is long-term back pain, along with spinal stiffness in the morning or after a long period of rest (this is the main reason why AS is often mis-diagnosed as ordinary “low back pain”).

Unlike in many other forms of arthritis where women are most affected, three out of four people diagnosed with ankylosing spondylitis are men. It tends to strike in the prime of life; while it can strike at any age, it is most common in people between ages 15 and 40. While it has no known cure, it is treatable; with the proper care, people who are diagnosed with AS can lead full, productive lives.

Diagnosis of ankylosing spondylitis

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