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%).
Please click here to read the full press release.
* 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.
L’année 2015 a été une année pleine de défis, de prise en charge et de changements. Et le comité ACE (Arthritis Consumer Experts) s’est tenu fidèlement à vos côtés pendant tous ces bouleversements, représentant la voix des patients-consommateurs et luttant pour les droits des Canadiennes et Canadiens atteints de toutes formes d’arthrite.
Pour moi, l’année 2015 a également marqué un point tournant : je peux affirmer maintenant avoir vécu plus de la moitié de ma vie avec la polyarthrite rhumatoïde. Mais où donc a filé tout ce temps ? Il me semble que c’était hier que j’étais assise devant un rhumatologue et que je l’entendais me dire « Vous êtes atteinte de polyarthrite rhumatoïde ».
ACE goes to Saskatoon for the 2015 CADTH Symposium
Making arthritis news: Sharing the latest from the Paris of the Prairies
Arthritis Consumer Experts (ACE) will be in Saskatoon, the “Paris of the Prairies”, to attend the 2015 CADTH Symposium at TCU Place. The meeting, between Sunday, April 12 and Tuesday, April 14, will bring together producers and users of evidence-based information on drugs and health technologies to learn about, collaborate and share the latest advances in health research and care. Each year, the symposium attracts an estimated 650 delegates from key sectors, including Health Technology Assessment (HTA) producers, health economists, government, universities, healthcare providers, industry and patient groups. Continue reading
What has ACE done for you lately?
Here’s what we’ve been up to in the new year!
In this issue of “What has ACE done for you lately” – a monthly roundup of what we have accomplished and what we are currently working on – we highlight our campaigns in the workplace, healthcare, arthritis community and research.
Live at the Canadian Rheumatology Association 70th Annual Scientific Meeting