Episode 6 Diagnosis STAT!

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!  

 

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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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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