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Latest patient-focused news from EULAR 2016

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:

EULAR Press Conference Slide

EULAR 2016

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%).

Please click here to read the full press release.

References

* EULAR 2016; London: Abstract OP0248

**EULAR 2016; London: Abstract OP0269-HPR

***EULAR 2016; London: Abstract OP0014-PARE

****Smolen JS, Breedveld FC, Burmeister GR, et al. Treating rheumatoid arthritis to target: 2014 update of the recommendations of an international task force. Ann Rheum Dis 2016; 75: 3-15.

Do you know someone who deserves an award?

The Qualman-Davies Arthritis Consumer Community Leadership Award

Qualman-Davies Award SlideDo you know a person with arthritis who has, or is, providing leadership in the community and deserves recognition for their valuable volunteer work? We encourage you to help us celebrate their contributions by nominating them for the Qualman-Davies Arthritis Consumer Community Leadership Award.

The Qualman-Davies Arthritis Consumer Community Leadership Award was created in 2014 to recognize one person’s contributions to helping Canadians living with the disease to be heard in decision-making processes that affect millions. That’s what Ann Qualman and Jim Davies did as early pioneers in arthritis advocacy in Canada. Their tireless and selfless efforts helped millions of Canadians.

Nomination process: Continue reading

JointHealth™ insight – numéro de mai 2016

Mise à jour de la recherche sur l’arthrite – le rapport ACE

Man addressing his audienceLe comité ACE (Arthritis Consumer Experts) est heureux de dévoiler une nouvelle présentation et un nouveau nom pour son bulletin JointHealth qui devient le JointHealth™ insight.

Depuis 17 ans, notre mission a été d’offrir aux personnes atteintes d’arthrite de l’information et des programmes éducatifs précieux, impartiaux, fondés sur des preuves et axés sur le consommateur, et ce, dans les deux langues officielles. Rien de tout cela n’a changé, mais ce qui a changé, c’est plutôt l’aspect et la présentation de notre bulletin qui a profité d’une nouvelle conception et d’un nouveau nom. Cette nouvelle présentation reflète ce que bon nombre de nos lecteurs nous avaient suggéré dans plusieurs de nos sondages. Plusieurs d’entre vous ont fait des commentaires sur l’évolution et les changements rapides dans l’accès au remboursement et aux options de traitements. Les lecteurs atteints d’arthrite inflammatoire et d’arthrose ont également indiqué que certains de leurs besoins en information n’étaient pas entièrement comblés, particulièrement en ce qui a trait à leur collaboration avec leur rhumatologue, la gestion de leur maladie et l’importance d’apprendre de l’expérience personnelle d’autres patients consommateurs.

JointHealth™ insight continuera de viser une meilleure compréhension et d’humaniser l’expérience arthritique en puisant parmi les expériences de vie de patients-consommateurs pour le bénéfice de toutes les personnes arthritiques, leurs proches, leurs amis, les membres de leur équipe de soins et le grand public. Nous avons également créé une version épurée et plus vivante de notre bulletin et croyons qu’il sera ainsi plus invitant et plus facile à lire, autant pour la version papier que la version en ligne, que ce soit sur votre tablette ou votre téléphone intelligent.

Dans ce premier numéro a, vous trouverez un aperçu des avancées de la recherche sur l’arthrite telles que discutées dans le cadre du plus récent Colloque scientifique annuel de l’American College of Rheumatology et de l’Association des professionnels de la santé pour l’arthrite, y compris les renseignements les plus récents sur :

  • Les nouvelles lignes directrices cliniques pour le traitement de la polyarthrite rhumatoïde;
  • La définition du consommateur du concept « Objectif du traitement »;
  • L’importance de la méthotrexate dans le traitement de la polyarthrite rhumatoïde;
  • Les nouvelles données sur les produits biologiques ultérieurs; et
  • Les nouveaux médicaments et développements de la recherche sur le lupus et la grossesse

Nous espérons que vous apprécierez ce numéro et que l’on pourra vous compter encore parmi nos fidèles abonnés du JointHealth™ insight.

JointHealth™ insight – Arthritis Research Update: The ACE Report

Picture of man addressing a crowdArthritis Consumer Experts is excited to unveil a new look and proud to announce a new name for our JointHealth™ newsletter: JointHealth™ insight.

For 17 years, our mission has been to bring valuable, unbiased, evidence-based and consumer-focused information and education programs in both official languages to people living with arthritis. This hasn’t changed. What is changing is the look and feel of our newsletter through a redesign and name change. Our new look reflects what our readers have told us in multiple surveys. Many of you have commented on how treatment options and reimbursement access are evolving and changing quickly. Readers living with inflammatory arthritis and osteoarthritis have also told us about unmet information needs, particularly regarding working with their rheumatologist, disease management and the importance of learning from other consumers’ personal experiences. Continue reading

ARThritis Soiree 2016: Join us for an evening of fun!

Arthritis Soiree Banner

Arthritis Research Canada will be hosting its annual ARThritis Soirée on Thursday, May 26 at 7pm. The Soirée will take place at the Vancouver Club, located at 915 W. Hastings Street, Vancouver. This gala will raise money for arthritis research, awareness, and advocacy. The concept behind the gala is that research has shown that art adds to one’s well-being. For many, it is a key element of managing chronic pain. Each year, the Soirée features one form of art. This year’s feature is the Art of Fencing with Olympic and World Champions.

The ARThritis Soirée is an evening designed to attract the city’s most prominent business and community leaders, philanthropists, doctors, scientists, healthcare professionals, and donors through an appreciation of art and a desire to support arthritis research.

The evening’s event will be emceed by Fred Lee, CBC, Vancouver Courier and The Province’s Man About Town. Guests can enjoy hors d’oeuvres, champagne, premium spirits and exquisite BC wines from LaStella and Le Vieux Pin wineries and indulge in legendary Joe Fortes oysters and Northern Divine Caviar.

There will be a live and silent auction, with items such as a chef’s table experience at Joe Fortes, photo sessions, paintings, and entertainment, vacation, spa and lifestyle packages. Buy your raffle ticket for a chance to win a beautiful Birk’s diamond necklace. Please note guests will have complimentary valet parking. Tickets to The 2016 ARThritis Soirée is available for $245.00 and includes complementary valet parking and a partial tax receipt. To learn more about the event, please click here.

Continue reading

Employment and Arthritis: Making it Work

Making it Work LogoArthritis Research Canada would like to evaluate the effectiveness of Employment and Arthritis: Making it Work – an online eLearning program designed to help people with inflammatory arthritis stay employed. To do so, they are looking for participants to join a randomized controlled trial to evaluate the aforementioned program.

You are eligible if you meet the following requirements: Continue reading