Episode 10 Patients Weigh In: Why the ‘Right‘ Diagnosis Name Matters w/ Charis Hill

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.

 

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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