Partnering with your healthcare team

EULAR News – ACE is at EULAR 2018!

ACE is sharing the latest research news from this year’s European League Against Arthritis’ (EULAR) Annual European Congress of Rheumatology in Amsterdam, Netherlands.

Banner for EULAR 2018ACE is attending this year’s annual meeting of the European League Against Arthritis (EULAR) in Amsterdam, which will be host to 14,000 participants from more than 120 countries in Europe and around the world. This year, EULAR received more than 5,050 research abstracts – the most ever. The meeting will feature over 175 sessions and 45 themed poster tours with more than 560 speakers showcasing work from 2,256 poster displays. ACE is here to learn the most current information on the impact, burden and cost of arthritis for patients and society, and the improved ability to diagnose and treat different types of arthritis early.

Many of these advances are the product of collaboration between healthcare providers and patients and patient organizations like ACE. We will be reporting over the next few days on how this collaboration is advancing models of care and development of advanced therapies.

ACE is also leading a meeting with members of the Global RA Network who are attending EULAR. At the meeting, ACE will facilitate discussion on the development of tools for Global RA Network members to use in their countries to raise awareness and advocate for improved models of care. Based on the 2017 Global RA survey findings, ACE is proposing to develop tools that will improve RA patients’ understanding about the kind and quality of care they should be receiving in their country to improve their disease and overall health.

A #CRArthritis interview with Laura Nimmon – Social science in rheumatology

We had the privilege of chatting with Social Scientist Dr. Laura Nimmon at the Canadian Rheumatology Association (CRA) Annual Scientific Meeting and Arthritis Health Professions Association (AHPA) last month. Laura is an assistant professor in the Department of Occupational Science and Occupational Therapy, as well as a scientist at the Centre for Health Education Scholarship at the University of British Columbia. Laura shared her time with #CRArthritis and sat down with us to answer some questions we had. As patients, we find her research meaningful, and we think you will too! Below are some highlights of the in person interview.

What is a social scientist and what do they do?

Social science is a broad field but can generally be categorized by the study of human society and social relationships. Social scientists aim to understand how our society works and will often use the information they gather to create or promote change within the society.

As a social scientist, how did you become involved in rheumatology?

I entered into the field of rheumatology by being awarded The Arthritis Society Young Investigator Salary Award, which gave me an opportunity to do research in the area. My focus is on teamwork. I look at how healthcare teams coordinate patient centred care and some of the tensions and social dynamics that exist in these interactions. I am conducting this research alongside an incredible team of colleagues consisting of health professionals and patient partners; it is a wonderful combination of minds with different experiences and backgrounds.

Could you share with us the key messages from your presentation at the conference?

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The benefits of massage therapy and how it may help those with arthritis

A young lady lying down preparing for massage therapy

Massage therapy for arthritis is conducted by a licensed massage therapist or physiotherapist. After consulting with your specialist, you can do self-massages at home. In a research study, Tiffany Field, PhD, director of the Touch Research Institute at the University of Miami School of Medicine, found that regular use of the simple therapy led to improvements in pain, stiffness, range of motion, hand grip strength and overall functions of the joints.

In another study, Field and her team found that massage also benefits people with painful hand or wrist arthritis. There were twenty-two adults, mostly women, in this study. The women have been diagnosed with either hand or wrist arthritis. Each participant was given four weekly massages from a therapist and taught to do their own massage to alleviate joint pain and soreness at home. Field concluded: “Just a 15-minute, moderate pressure massage per day, led to reduced pain and anxiety, and increased grip strength for the participants as measured on comparative pre- and post-therapy tests.”

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Call for patient input on guselkumab for moderate to severe plaque psoriasis

Stickman with megaphone calling for patient inputDo you have moderate to severe plaque psoriasis or care for someone who does? 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 guselkumab for the treatment of moderate to severe plaque psoriasis.

Guselkumab belongs to the biologic response modifier class of inflammatory arthritis medications. It works by blocking the interleukin (IL)-23 molecule, a cytokine that plays a key role in plaque psoriasis.

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 public reimbursement of medications, we would like to gather your views and share them with the CDR.

These are the questions they are asking: Continue reading

Worried about osteoarthritis? The Osteoarthritis (OA) Tool can help!

Osteoarthritis OA Tool Slide Image

The College of Family Physicians of Canada (CFPC), the Arthritis Alliance of Canada (AAC), and the Centre for Effective Practice (CEP) have joined forces to develop the Osteoarthritis (OA) Tool to help family physicians and other health care providers understand that osteoarthritis is a common, treatable, chronic illness by providing a tool that helps providers:

  • Identify, assess, and monitor OA
  • Equip patients for high quality self-management
  • Recommend specific non-pharmacologic and pharmacologic therapies

We encourage you to raise your voice to support this important initiative by:

  • Posting to Twitter using the hashtag #OATool
  • Promoting this initiative in your professional networks, such as LinkedIn, using the hashtag #OATool
  • Writing to us at feedback@jointhealth.org to share your impressions of the tool

The European League Against Rheumatism (EULAR) is heating up! “Don’t Delay, Connect Today”

ACE is attending this year’s European League Against Rheumatism (EULAR) annual congress in Madrid. The city is currently experiencing above normal temperatures with highs near 40°C and the rheumatology topics inside the convention centre are equally hot. Our first dispatch from the meeting looks at the launch of the “Don’t Delay, Connect Today” early intervention campaign. At a joint session for patients, clinicians, and health professionals, attendees heard how all three groups can contribute to the early diagnosis and treatment of rheumatic diseases.

Commenting on the campaign, Cheryl Koehn, ACE President said: “This campaign, by our colleagues in the European Union, neatly parallels the work the arthritis community in Canada has undertaken through the models care initiatives of the Arthritis Alliance of Canada where we define early identification of inflammatory arthritis and access to care as a key element.”

EULAR BannerThe EULAR campaign will encourage patients with typical arthritis symptoms to take action and consult their doctors as soon as possible.

At a presentation on the campaign, John Church, CEO of Arthritis Ireland, explained: “With the development of powerful biologic medications, improvements in care pathways for patients and very effective self-care options, early diagnosis and intervention can lead to significant improvement in lifestyle, physical movements, increased well-being, and work force participation.”

In an official news release, EULAR describes the campaign as follows: Continue reading

Raynaud’s may be more common in women of childbearing age

Findings from a recent study published in the European Journal of Pharmacology may explain why Raynaud’s is more common in women of childbearing age. The study examined the relationship between palm blood flow and estrogen in mice. According to researchers, “estrogen may contribute to the development of Raynaud’s phenomenon in women”.

About estrogen

Estrogen is a one of two main sex hormones that women have. It is responsible for female physical features and reproduction. Estrogen creates the changes common in puberty, such as growth of the breasts, hair in the pubic area and under the arms and the beginning of menstruation. The hormone helps control the menstrual cycle, protect bone health and keep cholesterol in control. Below is a helpful infographic Hormone Health Network to help you understand what estrogen is.

Infographic on estrogen, mentioned in this article about Raynaud's

About Raynaud’s phenomenon Continue reading

Patient experiences of rheumatoid arthritis models of care: An international survey

As part of an international network of RA patient organizations, Arthritis Consumer Experts invites you to participate in a global survey of RA patients to examine the diagnosis, treatment and care they receive for their RA. The goal of this survey is to understand, from the patient experience and perspective, how current “models of care” for rheumatoid arthritis compare between countries.

Global RA Network Survey BannerYour experience and perspective matter

As a person living with RA, sharing your experiences about the care you receive is vitally important. With your help, we can meet the study goals and develop education and information programs to improve patients’ understanding about RA models of care to enable the best treatment outcomes possible in Canada.

How you can participate

If you agree to participate, you will be asked to answer a survey questionnaire, which should take approximately 10 minutes to complete. All the information gathered during the survey will be combined to protect your privacy and anonymity.

To be eligible to participate in this survey, you must:

  • Be 18 years of age or older
  • Receive health care in Canada
  • Have access to the internet

Thank you for considering our request to participate in this survey. Your participation will help you and other people living with RA in your country know more about the health care they should be receiving.

Please click here to complete the survey.

#CRArthritis Speaker’s Corner – The road to become a rheumatologist

A screen capture of Cheryl Koehn and future rheumatologist Kelsey ChomistekIn 2008, a rheumatology workforce analysis report published by the American College of Rheumatology Workforce Study Advisory Group concluded:

Based on assessment of supply and demand under current scenarios, the demand for rheumatologists is expected to exceed supply in the coming decades. Strategies for the profession to adapt to this changing health care landscape include increasing the number of fellows each year, utilizing physician assistants and nurse practitioners in greater numbers, and improving practice efficiency.

Fast forward to 2015

The 2015 ACR/ARHP Workforce Study of Rheumatology Specialists in the United States projects a shortage of 3,845 rheumatologists in the U.S. by 2025, an increase from the 2005 ACR Workforce Study, which projected a shortage of 2,576 rheumatologists. Reasons for the shortage include: Continue reading

Cold hands are one of several warning signs of Raynaud’s Phenomenon

Close up of girl wearing mittens - way to prevent Raynaud'sRaynaud’s phenomenon is a condition in which there is an exaggerated blood vessel tightening in response to cold or emotional stress, restricting blood flow to certain areas of the body – most often the fingers, but sometimes the toes, ears, or the end of the nose.

The exaggerated vascular response (tightening) in Raynaud’s phenomenon is called vasospasm, which often occur in response to cold or emotional stress. With vasospasm, the fingers turn white and cold then blue with dilated veins followed by relaxation of the vessel and normal blood flow causing a red ‘flushing’

According to a recent article published in The New England Journal of Medicine, Raynaud’s affects approximately 3 to 5 percent of the population – women are more often affected than men. Raynaud’s phenomenon occurs in two forms – primary and secondary. Primary is the most common and has no underlying cause. Secondary is when Raynaud’s phenomenon occurs in combination with another autoimmune disease like scleroderma, rheumatoid arthritis, Sjogren’s syndrome or systemic lupus erythematous. The article also states that people who work with certain chemicals, like vinyl chloride, or vibrating tools like a jackhammer are also susceptible to secondary Raynaud’s. Continue reading