July 2018 News
by: Annette McKinnon
After 32 years with rheumatoid arthritis, this year was the first time I had the opportunity to attend the European League Against Rheumatism (EULAR) congress. It's possible to participate through reading research papers and newsletters to get a flavour of arthritis research in Europe, but it's not the same as actually being there.
I was there as a CAPA member. After being in patient groups in Canada for over 15 years, I found distinct differences in the way patient groups are organized in Europe. Also, patients are excluded from the commercial areas where the large pharmaceutical companies showcase their new discoveries and ideas. If I went past the fence into the pharma company section of the exhibition floor, my pass (see picture) would flash red, but usually security guards would stop me and other patients before that even occurred. This exclusion is because Europe takes a tough stance on direct to consumer advertising. Although this practice is illegal in Canada, we do not enforce it to the same degree at Canadian conferences and meetings.
EULAR is a huge gathering of arthritis experts from around the world. Usually new breakthroughs in treatment are announced and this year, four sets of new recommendations were presented, for Vaccinations, Sjogren's Syndrome, hand osteoarthritis and use of glucocorticoid therapy (steroids). When I went to pack my suitcase, I had three pounds of printed material to bring back with me!
This was the second year of the "Don't Delay, Connect Today" campaign. This is a campaign to increase awareness of the importance of early diagnosis, and connection to treatment as a way to prevent damage. The poster can be seen all across Europe.
Unsurprising biologic and biosimilar drugs are still on the agenda, with Prof Kvien of Oslo stressing keeping the patient at the center of the decision to switch from an originator biologic to a biosimilar.
At the conference CAPA was very much in evidence – we presented three posters and had another presentation included in the written materials of EULAR. The posters described a number of CAPA-led projects including our membership survey, the survey results about arthritis in the workplace, and the development of a resource for and by patients about managing the side effects of Methotrexate, a commonly used medication. CAPA Vice-President Dawn Richards also made an oral presentation on arthritis patient engagement in research in Canada as well as her contributions to Patient-Focused Medicines Development, a global initiative.
It was also exciting to attend the scientific presentations. Here are some observations from my notes:
- Nurse led assessment of comorbidities led to increased vaccination in patients with axial spondylarthropies, and more uptake of Vitamin D (Anna Molto).
- An update on reproductive issues in rheumatic disease and how elevated estrogen levels were seen in the synovial tissue of both women and men with rheumatic disease.
- A research study also showed that there was an increased risk of thromboembolic risk if women with rheumatic disease were treated with over 50 mcg of estrogen-based contraceptives. There was less risk if women were treated with progesterone only contraceptives such as IUD’s.
- Information regarding the EULAR recommendations for women's health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and/or antiphospholipid syndrome.
- Among young specialists who participated in an international survey, 80% are interested in attending local multidisciplinary meetings, 65% would like to collaborate on clinical research (A. Najim).
- Finding that direct and indirect costs of musculoskeletal disease were the highest of any non-infectious disease led to the development of a tertiary strategy for MSK disease in Switzerland (V. Krafft).
- What can strong patient organizations do? (K Koutsogianni)
- Why do we need Patient Research Partners? (1) DNH Funding Strategy (National patient inclusion in research strategy) (2) Researcher need (3) Researcher experience and (4) Institutional strategy (ER Dorris).
- Well controlled Disease reduces the burden of co-morbidities in RA (Klaus Krueger)
- Effective workplace accommodations used by people with rheumatic disease include: modification of work schedules such as flexible hours of work and modifying work-related tasks. Return to work was noted as a clinical outcome that should be identified in future studies and research.
It was also really enjoyable to be in a new city - Amsterdam!
Chronic pain affects between 15% and 20% of Canadian adults and reduces quality-of-life and our ability to participate in everyday activities, such as work or school. In fact, pain is the most common reason for Canadians to see a health professional and is a leading cause of long term disability. The International Association for the Study of Pain (IASP) defines chronic pain as any painful condition that lasts more than three months. Sometimes, pain continues to be experienced even when the original cause of the pain resolves. The scientific community believes that the nerve pathways that carry pain messages to and from the brain can become sensitized over time, and this contributes to pain persisting for months or years following injury and/or inflammation.
Unlocking the mysteries of chronic pain is important to the arthritis community because most people with arthritis (including me) experience significant pain from time to time. In some cases, like mine, pain is an everyday challenge. I attended the recent Canadian Pain Society (CPS) Annual Scientific Meeting (ASM) as a Patient Partner with the CIHR SPOR Chronic Pain Network and the University of Regina, Pain in Older Adults research team. Here are a few of my reflections on attending this year’s ASM.
First, the conference was a #PatientsIncluded event, indicating that pre-set criteria (developed by patients) outlined in the Patients Included Charter were met. Here are a few of these requirements:
- Patients with experience related to the conference’s central theme actively participate in planning the event and are active participants in presentations and discussions.
- Travel and accommodation expenses for successful patient applicants are paid in full in advance.
- All participant disability requirements are accommodated.
Now, let’s shift our focus to the topics presented and/or discussed at the conference.
These sessions provided a glimpse into the future and potential game changers for us and our children in five or 10 years for the prevention, diagnosis and management of chronic pain. While many advances are in their infancy, with treatments for humans being years away, learning about innovative research programs gives patients hope. The sessions covered a range of topics, including:
- The impact of the opioid epidemic on pain management, and a discussion of other ways to manage pain.
- The 2017 Canadian Guidelines for Prescribing Opioids for Chronic Non-Cancer Pain were discussed and there are a number of patient decision aids available under the “weak recommendations”. These decision aids can help patients and health providers work together in decision-making about opioids and pain.
- Improving pain education for students studying medicine, nursing, physiotherapy, psychology and other health disciplines. This topic is particularly important as pain education in current undergraduate programs in Canada is sorely lacking.
- Advanced imaging of the brain to evaluate pain and pain relief.
- Using technology to evaluate pain in people with dementia who are nonverbal.
- Using digital technology to help kids with pain.
- Providing the best pain management services with health care resources and access to multi-disciplinary pain management clinics.
- New horizons in fibromyalgia including the newly developed top 10 research priorities for Canadians with fibromyalgia here:
- National Guidelines for Opioid and Cannabis in Older Adults (currently in development).
Networking with other patient representatives was the highlight of conference for me. There were people with pain arising from conditions such as arthritis, low back pain, complex regional pain syndrome (CRPS), pelvic pain, headache and more. It was wonderful to gather together to talk about our varied roles within our own communities. The health professionals and researchers were were working hard to improve pain therapies and treatments and most were highly committed to working with patients in order to achieve this.
Finally, I would like to thank the CPS and the CIHR Chronic Pain Network for the financial support to attend the ASM, and to CAPA for inviting my thoughts and views on this event.