The Michael Smith Foundation of Health Research and Arthritis Research Canada have partnered to co-develop and host a series of monthly expert-led, beginner-level KT training webinars with the goal of developing a sustainable resource for researchers and trainees to learn knowledge and skills that will enable them to develop KT practice in their work.
En ce temps des Fêtes, alors que toute l’équipe se penche sur les 17 années passées à servir les Canadiennes et Canadiens touchés par l’arthrite, le comité ACE (Arthritis Consumer Experts) souhaite également partager avec vous les plus récentes informations sur la recherche et souligner nos programmes pour 2017. Vous trouverez donc dans ce numéro du JointHealth™ insight :
Le message de remerciement tout spécial de la part de Cheryl Koehn, fondatrice et présidente du comité ACE (Arthritis Consumer Experts)
La revue de toutes les réalisations du comité ACE en 2016
Une présentation des nouveaux cours Éducation JointHealth™ sur l’arthrite psoriasique et la spondylarthrite ankylosante
Une nouvelle recherche et étude de cas sur les biosimilaires
Une explication du concept de « données du monde réel »
« Au nom de tous les membres de l’équipe ACE et des membres de son Conseil consultatif d’experts scientifiques et médicaux et de personnes atteintes d’arthrite, je tiens à vous remercier encore une fois de votre intérêt soutenu, de votre participation généreuse et du soutien que vous apportez à nos travaux. Nous vous souhaitons un joyeux temps des Fêtes et l’amélioration de votre santé en 2017. » – Cheryl Koehn
This season, as we reflect on our 17 years serving Canadians with arthritis, Arthritis Consumer Experts wants to also share with you new research information and highlight 2017 programs. In this issue of JointHealth™ insight, you will find:
A special thank you message from Cheryl Koehn, Founder and President of Arthritis Consumer Experts
A review of ACE’s accomplishments in 2016
An introduction to new JointHealth™ Education programs for psoriatic arthritis and ankylosing spondylitis
New research and case study on biosimilars
An explanation of “real world data”
“On behalf of my ACE team members and our Scientific, Medical and Consumer Advisory Board, I want to thank you again for your interest, participation and support of our work. We wish you a joyful holiday season and improved health in 2017.”
Les personnes atteintes d’arthrite doivent réagir. Ensemble, nous devrons faire sortir notre maladie du placard et commencer à en parler, très abondamment.
Au cours d’un récent dîner, un bon ami à moi me confiait quelque chose d’assez révélateur : « Je ne te considère pas comme handicapée ». Pour lui, son commentaire était plutôt un compliment. Mais pour moi, il illustre l’ampleur de cette fausse perception très répandue à propos de la douleur arthritique comme étant un « état » associé au vieillissement et qu’on ne peut pas vraiment traiter. Son commentaire m’a également rappelé à quel point les personnes atteintes d’arthrite, souvent embarrassées à propos de leur maladie, vivent la douleur arthritique en silence, et cela, en dépit du fait que l’arthrite, une maladie invalidante et la cause principale de l’incapacité de travail au Canada, affecte plus de 4,6 millions de Canadiennes et de Canadiens et restreint de près de 20 pour cent les activités de nos concitoyens. Continue reading →
People with arthritis need to take action. Together, we need to pull our disease out of the closet and start talking about it.
At a recent dinner party, a good friend of mine said something revealing to me: “I don’t think of you as disabled.” My friend’s comment was meant as a compliment but also reflected the still common misperception of arthritis pain as a “condition” associated with getting old and that can’t really be treated. It also reminded me how people with arthritis are often embarrassed about it and live in silence. This in spite of the fact that arthritis affects more than 4.6 million Canadians, is a debilitating disease and the leading cause of work disability in Canada and limits the activities of nearly 20% of Canadians.
I have had rheumatoid arthritis for 27 years and while I have learned to live it, my life is a far cry from what it once was and what I wanted it to be. In my work, I try to build “pride” in everything ACE does. Still for reasons we have no “movement” but not because we’re not proud. Continue reading →
The European League Against Rheumatism Annual Congress is happening from June 8-11 in London, UK. Here is the latest press release highlighting patient-focused efforts at the conference this year:
European League Against Rheumatism Annual Congress
London, United Kingdom, 8-11 June 2016
NEW PATIENT-FOCUSED INITIATIVES SET TO OPTIMISE CARE OF RHEUMATIC DISEASES
Better understanding of the patient perspective and actively encouraging patient participation is key
London, United Kingdom, 8 June 2016: Results from patient-focused initiatives unveiled at the European League Against Rheumatism Annual Congress (EULAR 2016) have highlighted the importance of seeking and better understanding the patient perspective, as well as actively encouraging patient participation, to optimise care of rheumatic diseases.
Findings from these patient-focused initiatives show:
Although many patients are satisfied with their RA treatment, non-adherence persists and many would like to discuss and/or change their current prescribed treatment, but don’t discuss it through fear of their case being compromised*
How patients with rheumatic diseases and their HCPs highly value patient participation in multidisciplinary team conferences, with treatment plans developed in partnership encouraging greater patient commitment and better outcomes**
How patients can usefully be involved in updating clinical training programmes by making healthcare providers and medical students more aware of the patients’ perspective as an important step towards optimizing care in rheumatoid arthritis (RA).***Patient survey highlights importance of treatment conversations between patients and HCPs
Patient survey highlights importance of treatment conversations between patients and HCPs
Although many patients are satisfied with their RA treatment, non-adherence persists and many would like to discuss and/or change their currently prescribed treatment, but don’t discuss it through fear of their care being compromised. This was the main finding from a patient survey, developed by the RA NarRAtive global advisory panel, which was designed to better understand the perspective of patients regarding management of their RA and interactions with their physicians.*
The RA NarRAtive initiative is the first survey of its kind to simultaneously evaluate the patient/HCP relationship and communication, as well as patients’ experience and satisfaction with treatment and disease management.More than 3,600 adults with RA from 13 countries responded to the patient-based survey. Almost one-half of RA patients under HCP care acknowledged that dialogue with their physician would optimise management of their condition. However, around six out of every ten respondents felt uncomfortable raising treatment/disease concerns to their HCP, feeling anxiety about raising too many questions and consequentially being perceived as a difficult patient.Although the current treatment goal for physicians is to achieve clinical remission or low disease activity,**** patients most commonly defined successful treatment as a reduction of pain and/or joint swelling/inflammation (81%) and improvements in quality of life (77%).
“Further understanding the responses from this survey will be important to facilitate communication between patients and HCPs, with the ultimate aim of improving treatment outcomes,” said lead author Ms. Cheryl Koehn, President of Arthritis Consumer Experts, Vancouver, Canada.
Of the 2,139 RA patients receiving medication, justover one-third admitted to not taking it as prescribed. Overall, just over three-quarters of patients currently taking RA medication were satisfied with their treatment regimen; however, 70% desired fewer medications, more than one-half were worried their medications would fail, and more than one-half wanted more medication choices. Aspects of current prescribed treatment that RA patients would most like to change included: number and frequency of medications (35%); side effects (34%); access to, or cost of treatment (30%); availability of mono therapy (25%); alternative to subcutaneous injections (18%); inconvenience or limitations from medication (16%); and mode of administration (12%).