Episode 62: Patient-Reported EULAR2021 Debriefs ... and We‘re Off!

This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, Patrice Johnson, Katie Simons, and Leslie Rott Welsbacher as they brief our AiArthritis patient community on the first day of EULAR 2021. Tiffany, Deb, and Katie are the core team members attending the conference, but as part of our "Go with Us! to Conferences" program, we have invited three patients to be part of the experience, too! Joining us for this debrief are Patrice Johnson and Leslie Welsbacher. Patients are one of three pillars of EULAR (researchers and medical professionals make up the other two) and are encouraged to attend and participate in the annual conference. So here we come!

Formerly known as the European League Against Rheumatism, the organization is now called European Alliance of Associations for Rheumatology (EULAR) and is in the midst of hosting their annual conference online for the second consecutive year due to the COVID-19 pandemic.  Our first review covers emerging conference themes (inflammation as an umbrella, comorbidities and "multi-morbidities") and covers featured recommendations for disease management.

Whether in person, or attending online, our organization always attends, then does patient-led video debriefs - highlighting lessons learned from sessions and reporting back what is new in research. But we don't just tell you what we learned, we invite you to learn with us.  So we invite you to get comfy on your couch with a glass of your preferred beverage, pretend we are all together in Paris (intended location of the conference before it was moved to the virtual platform), and enjoy our debrief of this first round of sessions. Then head over to our YouTube Channel or online patient platform to learn even more!

Also, check out Leslie's blog: Getting Closer To Myself - where she chronicles life with RA and Lupus.

 

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If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.

 

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AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).

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Episode 62: EULAR 2021

 

00:52 - Tiffany welcomes listeners.

01:41 - Tiffany is joined by recurring co-hosts Deb and Patrice, as well as fellow patient co-hosts Katie and Leslie.

04:04 - Today’s episode is brought to you from the European Alliance of Associations for  Rheumatology Virtual Conference 2021 (formerly the European League Against Rheumatism).

07:29 - Collaboration is a major theme of the conference this year.

08:06 - Patients are 1 of 3 pillars in the organizational structure of EULAR (along with researchers and health professionals), so they are welcomed and encouraged to participate in the annual conference.

09:11 - Inflammation is another major theme of the conference, even including a session on the impact of inflammation on dementia.

13:17 - One session Tiffany and Patrice attended was titled “HELP!  What do I need to cope with my rheumatic disease?”

14:32 - Patrice gives a brief summary of the session.

18:13 - One of the key themes of the session was the interaction between genetics and environmental triggers and how educating people about potential triggers may help prevent onset of disease in people who are genetically predisposed to develop rheumatic disease.

24:09 - Comorbidity is when the primary disease triggered some other condition, whereas multi-morbidity is when some factor to do with the patient spontaneously triggers multiple disease conditions.

27:33 - The second session the co-hosts attended was on exercise.

28:50 - Tiffany asks the other co-hosts: do you have any fears about exercising?

29:00 - Patrice exercises every day and says movement makes her feel better.

30:20 - In Italy 90% of people living with rheumatic diseases are inactive. In the US around 70% of patients are inactive. In Finland, around 40% of patients were inactive (which was the most active country in the study).

30:49 - Researchers want to know why more patients don’t exercise when the studies show that exercise helps patients feel better.

31:35 - Researchers put a group of 136 rheumatic patients on a high-intensity weight-bearing exercises for 2 years and did not have any more damage or disease progression than the control group.

34:22 - Tiffany talks about the importance of knowing your limits as related to your specific diagnosis. Keep in mind that all exercise advice is generalized and you have to figure out the routine that works for you.

36:15 - Katie talks about working with physical therapists who understand your condition to look for expert guidance on what works for you.

38:00 - The next session the co-hosts attended was on Remission and Lupus: Is remission achievable with today’s drugs?

38:31 - In recent studies, at least 50% of patients were able to achieve at least one remission state.

38:38 - For people who have had Lupus a long time, long-term remission is very rare.

39:15 - Clinical remission without treatment is extremely rare and probably not a realistic goal for patients, but clinical remission with treatment is definitely possible.

42:45 - Patrice asks Leslie: How did you feel about a presenter describing Lupus patients’ quality of life as poor?

43:44 - Leslie discusses people’s perception of Lupus, quality of life issues, and health equity.

52:28 - Tiffany attended a session on multidisciplinary care.

52:48 - Tiffany asks her co-hosts:  how many different doctors do you have?

53:00 - Only Deb and Tiffany have teams that work together (both within University systems). Everyone else has doctors that do not talk to each other.

54:10 - Tiffany also attended a session about RA that is difficult to treat , where researchers defined “difficult to treat” as failing 2 or more treatments that use different mechanisms of action.

55:50 - AiArthritis is partnered with OMERACT and EULAR on a study about synovial tissue studies.

56:46 - Aurelie presented at a session based on this research where she recommended 14 points to EULAR about changing physician practices with regard to patient education and biopsy collection.

1:02:00 - This episode will be broken down into smaller video segments and posted to our YouTube channel for anyone interested in watching specific segments.

1:02:44 - All of the videos from EULAR 2020 are also available on our YouTube channel as well.

1:02:55 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow.

1:03:10 - Connect with us on social media @ IFAiArthritis on all platforms.

1:03:30 - Email Katie at katie@aiarthritis.org if you are interested in attending future conferences (please put Go To Conferences in the subject line).

1:03:45 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward.

1:04:21 - Follow Leslie’s blog @ GettingCloserToMyself.blogspot.com.

1:05:00 - Tiffany thanks listeners for joining all of our co-hosts today.