Table 3 Patient perspectives on improving the screening process for axial spondyloarthritis
Theme | Representative quotes |
|---|---|
Listen and believe the patient | “But there’s like that famous joke that -- the tombstone that says I told you I was sick. I mean, that’s the way I felt was like I told you something, like, it wasn’t just complaining” (34 year old male) |
Do not come to premature closure when the patient does not fit the typical profile | “Be willing to listen to your patient, do the diagnostics, do the research. If what you’re doing isn’t working, you know, don’t follow that same path that’s not working. Take a step back. Talk to your peers. I mean, we say it at work, phone a friend. There’s got to be other people you can talk to if you’re not helping your patient. Refer them out. Don’t make your patient suffer for something that you’re not sure about.” (41 year old female) |
Find a more definitive test /use HLA-B27 | “maybe it points out that there should be more research? … And finding out a marker that can be identified and then they can treat it, but if you just sort of well, it could be this, it could be that -- something definitive that would help in a diagnosis.” (75 year old male) “I went to see my primary care and I told my primary care [I was] having a sacroiliac pain with uveitis, I really want you to check my HLA-B27. So he ordered it, it came back positive, and then sent me to the rheumatologist and that’s how I got the diagnosis, basically 25 years later.” (45 year old male) |