Diagnosis STAT!
AiArthritis Voices 360 Full Episode #6
Air Date: December 22, 2019
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!
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The AiArthritis Voices Program
Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our 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.
If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect.
The picture of Tiffany's recording of her onset and progression that was mentioned in the episode
Show Notes:
00:56 – Tiffany welcome listeners and Co-Host Suz Schrandt
01:35 – Suz explains ExPPect, LLC, 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 for those with radiographic changes, it may not be required
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 (See Tiffany's actual sheet below, where she tracked her journey FROM DAY ONE. This was key to helping her receive a diagnosis when she had no positive blood work or radiographic changes.)
41:13 - Suz invites those with stories of delayed diagnosis to report these to SIDM (Society to Improve Diagnosis in Medicine) collects stories from patients of delayed or missed diagnoses at https://www.improvediagnosis.org/ .
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 American College of Rheumatology (ACR) or European League Against Rheumatism (EULAR) site: www.rheumatology.org and www.eular.org
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
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).
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Your Co-Hosts & Guests: Who is at the table this episode?
Suz Schrandt
Suz Schrandt is a patient diagnosed decades ago with Juvenile (Rheumatoid, now called Idiopathic) Arthritis and patient engagement advocate with a health and disability law background. She recently launched a new patient engagement initiative called ExPPect and is currently serving as the Senior Patient Engagement Advisor to the Society to Improve Diagnosis in Medicine. Schrandt previously served as Director of Patient Engagement at the Arthritis Foundation, and as Deputy Director of Patient Engagement for PCORI. Her career spans work in health reform, bioethics, and genetic discrimination, as well as a long history in patient-led clinical training. Schrandt is one of nine voting members on the FDA’s inaugural Patient Engagement Advisory Committee, the Chairperson for the International Society of Pharmacoeconomics and Outcomes Research North American Patient Roundtable, and has been an invited speaker at numerous US and international conferences. Schrandt received her law degree from the University of Kansas and has co-authored multiple publications on health policy and the value of patient engagement.
More about ExPPect: "Patient engagement should be the expectation and not the exception. ExPPect is like a 'do-tank' if you need to get patient engagement done, or you need to understand what patient engagement is, or how to involve patients in important work in healthcare research or clinical education training."
Society to Improve Diagnosis in Medicine is working to create a world where no patients are harmed by diagnostic error.
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