18.6K
Downloads
140
Episodes
On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Episodes
Wednesday Jan 22, 2020
Wednesday Jan 22, 2020
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
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.
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).
Be sure to check out our top-rated show on Feedspot!
Sunday Jan 19, 2020
Sunday Jan 19, 2020
Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she and co-host Charis Hill discuss the evolution of the term Ankylosing Spondylitis into the new umbrella term: Axial Spondyloarthritis. What does this new term mean? How will it impact treatment options or the patient experience? Does it even matter what your diagnosis is if the treatments for AiArthritis are all basically the same? Listen in as they talk about these and other issues surrounding finding the right diagnosis. Then visit us on social media or online to make your voice heard in the ongoing discussion.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
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.
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).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 10 – “The Right Diagnosis”
00:57 – Tiffany welcomes listeners and fellow patient co-host, Charis Hill
03:14 - The diagnosis of ankylosing spondylitis has been replaced with the umbrella term “axial spondyloarthritis”
03:46 - Non-radiographic axial spondyloarthritis was also added as a diagnosis that would cover early or atypical disease presentation that isn’t visible on radiographic imaging
06:10 - Some physicians within the rheumatology community do not believe there is a meaningful reason to differentiate between radiographic and non-radiographic diagnoses
06:25 - There is still a lack of clarity with regard to diagnostic coding which can impact patient access to treatments and the ability of researchers to track diseases
08:08 - Charis’ diagnosis story
15:08 - Early research suggests that non-radiographic axial spondylitis may be equally common in men and women, is often found in people who are HLA-B27 negative, and may have lower inflammation markers on blood work than the radiographic variety
16:35 - Biologically female patients are more likely to have neck involvement than biologically male patients, who present with the traditional lower spine involvement
18:16 - Axial spondyloarthritis is a more clinically accurate term because ankylosing spondylitis references only fusion of the spine, whereas axial spondyloarthritis encompasses inflammation or arthritis involvement anywhere in the center of the body
21:30 - Within the medical community, there is still significant conversation about what terminology to use
22:40 - Tiffany wonders whether radiographic patients would object to sharing a diagnosis with non-radiographic patients
23:47 - The Spondylitis Association of America has detailed information on their website about the differences in the changing terminology
24:37 - Spondyloarthrtis is the umbrella term that encompasses radiographic, non-radiographic, and peripheral disease presentations
24:57 - Patients want to be informed about their diagnosis terminology and understand what it means
26:05 - There has been considerable effort to raise awareness about Ankylosing Spondylitis, and now some people fear that changing the term will make it even more difficult to educate the public about this disease family
27:43 - Possibly grouping several diagnoses together will help raise awareness by increasing the numbers of people united toward the same goal
29:05 - Patients are still reporting that doctors don’t believe them without radiographic evidence
29:15 - Hopefully using the umbrella terminology with the subset diagnoses will help all rheumatologists to understand that not all patients will present with radiographic evidence
30:28 - The CDC does not have an accurate count of the number of patients with axial spondyloarthritis because many people with non-radiographic AxSpa were given a different diagnosis code so they could have access to treatments
32:05 - Even if the treatment isn’t going to change, patients want validation that their doctor knows exactly what is going on with them
32:15 - Patients want an accurate diagnosis so that they will have access to the right treatments in the future as new medications may be approved for their specific diagnosis
33:08 - Rheumatoid arthritis research has been applied to AxSpa patients, even though those diseases are very different
34:46 - Accurate diagnosis in medical records may also be important to future generations for reporting their medical history accurately
39:45 - Rheumatologists treat 200+ different diseases, so it is important for the patient to be knowledgable about their own disease because you may be 1 of only 10 patients your doctor sees with your specific disease
41:30 - Tiffany thanks Charis for co-hosting the episode
41:55 - Tiffany invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
42:53 - Visit aiarthritis.org/podcast to nominate yourself or someone else to co-host an episode of AiArthritis Voices 360
Wednesday Jan 15, 2020
Wednesday Jan 15, 2020
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.
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).
Be sure to check out our top-rated show on Feedspot!
Sunday Jan 12, 2020
Sunday Jan 12, 2020
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
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.
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).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 9 – “Changing the world with your knee tissue - investing in our future”
00:51 – Tiffany welcomes listeners to a touring episode recorded at the American College of Rheumatology Annual Meeting featuring rheumatologist and clinical researcher, Dr. Aurélie Najm
02:10 - Tiffany is joined by patient co-host Deb Constein
02:44 – Aurélie introduces herself
02:57 - She is researching providing tailored treatments to patients with rheumatoid arthritis
03:22 - Aurélie is the co-chair of the EULAR Synovitis Study Group, which is studying synovial tissue to determine the best treatment for each patient
05:10 - Cellular dysfunction in the synovial membrane causes synovitis (or inflammation of the synovial lining in joints)
07:30 - Patterns of inflammation within the synovial tissue can predict the future evolution of disease for that patient and which anti-rheumatic drugs may be more effective for that patient
10:56 - Deb discusses her experience with joint biopsy procedures
13:34 - The two methods available for obtaining synovial samples from joint spaces are arthroscopic or ultrasound guided biopsy
15:58 - Arthroscopic biopsy may be more precise due to the ability to visualize the inflammation when choosing a sample site
17:31 - Please consider providing input on what questions you have about synovial biopsies or participating in clinical research by visiting our website
19:41 - What would be the barriers and benefits to you as a patient participating in clinical research?
20:44 - Explaining the purpose of any procedure to the patient, especially when procedures are for clinical research and not necessity, is critically important.
22:11 - Volunteering for procedures to support clinical research is “an investment in the future.”
23:00 - Tiffany invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
23:34 - Tiffany thanks Aurélie for her time
24:56 - Researchers need patients to participate in clinical trials to benefit the entire AiArthritis community
25:10 - IFAA seeks to help researchers develop the right protocols to recruit patient participants
26:03 - Visit aiarthritis.org/podcast to learn how you can help
Wednesday Jan 08, 2020
Wednesday Jan 08, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she talks about brain fog. Studies have shown that most people with aiarthritis experience brain fog, but why? What does the experience feel like for you? Tune in for information on the causes and a few strategies for combating it. Then visit our website or email us at podcast@aiarthritisvoices360.org to be a part of the conversation.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
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.
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).
Be sure to check out our top-rated show on Feedspot!
Sunday Jan 05, 2020
Sunday Jan 05, 2020
Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she and co-host Suz Schrandt talk about the variety of opportunities that exist for patients who want to become active in medical research, education, and advocacy. Regardless of your background, there are opportunities for you to get involved and help shape the future of medicine and science regarding autoimmune and autoinflammatory arthritis. Your voice matters, and you can make a difference. Pull up a chair to find out how to get started and where your journey could take you.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
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.
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).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 8 – “Where Can Patients Use Their Voice? Everywhere!”
00:53 – Tiffany welcomes listeners and co-host, Suz Schrandt
01:12 – Suz is the Senior Patient Engagement Advisor for the Society to Improve Diagnosis in Medicine (SIDM) and Founder of a patient engagement initiative, ExPPect
01:31 – Suz explains the mission of ExPPect
04:39 – Suz explains how she got involved with patient engagement
07:47 - Tiffany explains how she started working with PCORI (Patient-Centered Outcomes Research Institute)
09:55 - Patient research partners are equal members of research teams
10:22 - There are many opportunities to get involved in patient-centered research
11:00 - Patients can become ambassadors for PCORI
13:00 - European Patients Academy on Therapeutic Innovation, the European Patients Forum, and the Innovative Medicines Initiative are all European resources for getting involved as a patient researcher
14:00 - International Society for Pharmacoeconomics and Outcomes Research (ISPOR) hosts patient representative round-tables all over the globe
15:56 - The US Food and Drug Administration (FDA) also has opportunities for patient involvement in the development and approval process for new medications
17:06 - Patients can partner directly with pharmaceutical companies to conduct research
19:03 - Most of these opportunities include some preliminary training to equip patients with the skills they need to fully participate
20:56 - The US does not have a singular Health Technology Assessment body like many other countries.
21:37 - Patients in countries that have an HTA body can serve as co-reviewers to help determine which therapies will be funded
24:08 - Instead, the US has the Institute for Clinical and Economic Review (ICER) which has some opportunities for patient participation
25:03 - Patients can be Advocates for the American College of Rheumatology
25:37 - Patients can provide input when medical specialty organizations are developing their clinical practice guidelines
27:05 - Patients can serve as Medical Educators by joining local hospital patient and family advisory councils
29:51 - Patient Focused Medicines Development (PFMD) has a repository of people, projects, and best practice guidelines for patient engagement called SYNaPsE
31:13 - Tiffany thanks Suz for coming onto the show to talk about patient engagement opportunities
31:26 - Tiffany thanks listeners and invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
32:00 - IFAA is recruiting patients to join AiArthritisVoices.org to get involved
Wednesday Jan 01, 2020
Wednesday Jan 01, 2020
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.
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).
Be sure to check out our top-rated show on Feedspot!
Sunday Dec 29, 2019
Sunday Dec 29, 2019
Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she gives the 2019 Year End Report on IFAA’s work to benefit the AiArthritis Community. You will have a front row seat as she explains the important work IFAA has been doing since its inception and the organization’s goals for 2020. IFAA needs your support to continue these projects. Learn how you can help make a difference in medical research, patient advocacy, pharmaceutical development, spreading awareness, public and physician education, and improving the quality of life of patients living with AiArthritis diseases.
Learn more about this episode and all the projects mentioned in this show at https://www.aiarthritis.org/podcast-ep7!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
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.
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).
Be sure to check out our top-rated show on Feedspot!
00:56 – Tiffany welcome listeners
01:55 – IFAA was founded to prevent people from experiencing Tiffany’s struggle to obtain a diagnosis
03:10 – AiArthritis diseases that are not found early can result in permanent changes to a person’s life
04:15 – Please consider gifting to IFAA so that we can continue our mission
04:35 - IFAA is driven by the idea that patient experiences are key to finding solutions that impact education, advocacy, and research on AiArthritis diseases
07:00 - IFAA facilitated conversations among patients that helped to create a list of early symptoms of AiArthritis Diseases to help physicians and patients recognize symptoms as early in the disease progression as possible
8:00 - IFAA listens to all patient opinions and uses that input to create solutions
10:00 - In 2015, IFAA launched an investigation of the ethics of step therapy
14:05 - IFAA realized that insurance companies were basing decision on research gathered from clinical trials which excluded a majority of patients because their disease progression did not fit the standard
18:16 - IFAA established World AiArthritis Day to educate people about Autoimmune and Autoinflammatory Arthritis
18:45 - IFAA promotes understanding of the early symptoms of AiArthritis so that patients and physicians will seek input from rheumatologists sooner
20:04 - IFAA used this information to create early detection models and provided them to primary care physicians to assist in early identification of patients with AiArthritis symptom onset. We need your support to continue this work
21:00 - IFAA is actively seeking individuals who have symptoms but no diagnosis so that researchers can collect early symptom information that is not based on recall after the fact. This work is unprecedented and is based on needs identified by medical researchers.
22:37 - This work is funded by donations, not grants
23:00 - IFAA has spent a year developing AiArthritis Voices, an online forum for promoting education, advocacy, and research of AiArthritis Diseases
24:08 - AiArthritis Voices 360 Podcast was the result of an Innovation Award Grant
24:43 - This podcast was founded to give people around the world a voice in the important discussions about AiArthritis Diseases, even if they are not able to participate in online forums or medical conferences
25:55 - IFAA cannot continue our work with the online forum or the podcast without support from donors
26:20 - In 2019, IFAA started working on the Patient Reported Stills Disease Brochure Project to identify patient reported early symptoms of Stills Disease
28:35 - IFAA hopes to expand this project to create patient reported brochures for the other AiArthritis diseases
28:47 - IFAA attended 2 rheumatology conferences in 2019: American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) to collect information and disseminate it our members.
29:10 - IFAA needs donor funding to collect information at conferences and share it via the podcast and the online forum
30:00 - IFAA partnered with the Rheumatology Nurses Society on our precision medicine project as a result of meeting them at the ACR conference in 2018; attendance is important!
32:28 - In 2020, IFAA will develop an educational component to teach patients the difference between precision medicine and personalized medicine
34:15 - In 2020, IFAA will continue to develop the AiArthritis Voices online forum and seek to train patients to act as focus group moderators to decrease the cost of medical research
36:08 In 2020, IFAA will continue to focus on educating the public about biosimilar treatment options
37:38 - IFAA will continue working to protect access to treatment for patients with employer-provided health insurance in the US
41:00 - IFAA will be hosting our first Gala, The Auto Ball, on Friday, May 15th at the National Museum for Transportation in St Louis, MO, which will also serve as the official launch party countdown to World AUTOimmune & AUTOinflammatory Arthritis Day, May 20th. Let us know if you want to get involved!
44:24 - IFAA needs your support to continue the important work we are doing to benefit the AiArthritis Community
44:43 - One time gifts can be made at www.aiarthritis.org/donate
45:00 - Vocal Impact Partners can make a monthly gift beginning at $10 per month, Sign up at www.aiarthritis.org/VIP
46:15 - Tiffany thanks listeners for their support of the podcast and IFAA
Wednesday Dec 25, 2019
Wednesday Dec 25, 2019
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she talks about the best gifts. When you’re a child, the best gift is usually an exciting toy. As you age, your ideal gift changes. People with AiArthritis diseases benefit from tools that help us remain active and comfortable so we can live our best lives. Do you consider mobility aids while shopping for a special someone? Is there a special can opener or heating pad on your wish list? We want to hear your best ideas for tools, devices, and comfort items that make life better for someone living with AiArthritis. Share your thoughts on social media @IFAiArthritis with #bestgift or email us at podcast@aiarthritisvoices360.org.
Watch the video of Tiffany giving her mom, challenged this year with autoimmune arthritis, a #BestGift ... a custom made mermaid cane! Because if you have to walk with a cane, why not make it fun? https://youtu.be/UYyEdbUCaVM
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
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.
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).
Be sure to check out our top-rated show on Feedspot!
Sunday Dec 22, 2019
Sunday Dec 22, 2019
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Suz Schrandt discuss the importance of early detection and diagnosis. They address barriers to receiving an accurate diagnosis, as well as what patients can do to increase their chances of receiving an accurate diagnosis in a timely fashion. Research consistently shows that early intervention improves patient outcomes. Whether you are a patient looking to confirm the accuracy of your diagnosis or avoid diagnostic delays in the event of new disease onset or a member of the public wondering if you or someone you love could be experiencing the onset of a rheumatological disease, this episode is a must-listen!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
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.
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).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 6 – “Early Diagnosis”
00:56 – Tiffany welcome listeners and Co-Host Suz Schrandt
01:35 – Suz explains Expect, a patient engagement initiative she founded
02:44 – The topic for today’s episode is early diagnosis because so many people experience delays in diagnosis that last months or years
04:15 – People frequently receive the wrong rheumatological diagnosis and treatment before discovering the correct one
07:15 - Delays lead to regret and distress as people wonder if they could be in remission if they had been diagnosed and received treatment sooner
07:48 - Suz’s diagnostic story
16:20 - Suz explains Polyarticular, Oligoarticular, and Systemic JIA (3 of the most common types of Juvenile Idiopathic Arthritis)
16:57 - Systemic JIA can be difficult to differentiate from juvenile lupus
19:25 - Clinicians have a tendency to focus on specific symptoms or parts of the body instead of seeing the whole picture, which adds to diagnostic delays
19:40 - Institutional barriers like short appointment times, overcrowded physician schedules, and cost concerns also cause delays in diagnosis
20:50 - Some of the hallmark symptoms of arthritis (like pain and fatigue) are invisible
21:17 - People will delay seeking medical help until they exhaust all options to manage symptoms themselves because amongst other things we assume it’s something we can manage or because we’re afraid of navigating the healthcare system
23:16 - Early age onset can also contribute to diagnostic delays because the patient appears very healthy
23:29 - Diagnostic delays also occur when medical professionals do not believe patients’ stories
24:50 - There are between 40,000 and 80,000 deaths per year in the United States due to delayed and missed diagnoses
25:12 - Age, gender, race, and ethnicity can all cause diagnostic delays
25:56 - Patients need to receive all of their test results in a timely fashion and may need to advocate to receive access to them
27:27 - Patients do not need positive bloodwork to receive an RA diagnosis, but it is very common for doctors to dismiss patients without supporting bloodwork results
29:35 - ACR diagnostic criteria only requires 1 or more swollen joints for more than 6 weeks without another explanation, but many clinicians - especially primary care - do not know that
30:26 - If your erythrocyte sedimentation rate (SED rate) is elevated or your RA factor is positive, that can be helpful for a diagnosis, but it is not required
31:35 - Testing positive for the HLA-B27 antigen increases the chances that you have ankylosing spondylitis (but some with radiographic changes may not have the gene).
32:38 - Suz explains work she has done to teach medical students how to diagnose aiarthritis
35:34 - The work Suz has done to teach practicing clinicians to identify aiarthritis diseases has increased referrals to a rheumatologist by 11% among doctors who completed the training she provides
36:30 - Treatment in the first two years is critical to preventing longterm damage and destruction
38:22 - You can review the diagnostic criteria for any rheumatological illness on the ACR or EULAR websites and use the information to discuss your concerns with your clinician
39:19 - Tracking your symptoms can really help avoid diagnostic delays and maximize the value of your appointment time with your doctor
41:13 - SIDM (Society to Improve Diagnosis in Medicine) collects stories from patients of delayed or missed diagnoses
42:23 - Tiffany invites listeners to visit aiarthritis.org/podcast and view the page for this episode to share your diagnosis story with SIDM or view diagnostic criteria on the ACR site
43:08 - Tiffany invites listeners to visit aiarthrits.org/voices to register and participate in discussions about this and other important issues surrounding aiarthritis diseases
43:46 - Tiffany thanks Suz for stopping by to discuss early detection and diagnosis of aiarthritis diseases