Table 3.

The healthcare professional perspective of barriers to diagnosis

Theme	Brief description	Sub-themes	Example quotes
axSpA is difficult to diagnose	Barriers caused by the complexity of axSpA diagnosis	Difficult to define and differentiate	“… lot of patients are picked up a bit late so it’s not uncommon to see people in their forties presenting with it. And I find that’s a more challenging group to tease out symptomology and I think the reasons for that might be because they have a mixed mechanical and inflammatory problem usually by that time” (H075) “I think it is just a tricky condition because there isn’t one single diagnostic test, it’s more forming the picture through a collection of signs, symptoms and your investigation results so it isn’t just any one thing.” (H080) “I know most women with AS tend to be misdiagnosed with fibromyalgia…” (H091)
		Investigations with uncertain outcomes	“… when you see a patient, you can’t just clinically say, this is axial spondyloarthritis’, you have to do imaging to confirm. That imaging can take time and sometimes you get equivocal imaging and then you have to repeat the imaging after a period of time and see how things evolve” (H072) “Especially the ones on the borderline of being diagnosed, but there’s not enough sort of from an investigation point of view to formally, formally diagnose them but you’ve got every clinical suspicion” (H071)
Lack of awareness of axSpA	Poor awareness of axSpA in healthcare and general public spheres reduces likelihood of suspicion of inflammatory arthritis being raised by symptoms	Patient and public lack of awareness	“… patients themselves lack awareness of inflammatory causes of back pain… They don’t know something like this exists, they just think it’s back pain, muscle strain, mechanical back pain, that sort of thing so that will often have delayed them seeking help” (H075) “… it’s not a common presentation, unless you’ve got someone in the family… I don’t think even Google brings up inflammatory back pain… they don’t usually come up with, ‘I think I’ve got axSpA.’” (H083)
		Lack of awareness in healthcare	“I think physiotherapists may not understand the relationship between back pain and the other associated sort of things that come along with spondyloarthropathy, so things like psoriasis, enthesitis, uveitis, inflammatory bowel disease…” (H083) “… they don’t know as much about back pain and spondyloarthropathies, they wouldn’t necessarily know which test to ask for” (H082)
Sub-optimal practice in healthcare	Configuration of, and practice within, healthcare services slowing down journey to diagnosis	Time	“…clinicians don’t have enough time to spend with the patient, or consultants who make this diagnosis, or GPs who refer them or you know suspect the patient has AS, don’t have enough time to actually sort of look into those nuances to make a differential diagnosis” (H091) “GPs just need to be aware that they’re referring into the right service at the right time for the patient. And that’s a bit difficult if you’ve only got 5 or 10 min with somebody isn’t it…” (H071)
		Clinical guidance	“… it ends up that there’s quite a strong guidance to manage everything essentially as mechanical. … understandably it’s playing to the incidence and prevalence numbers and to this whole public health aspect that we don’t want to be overly irradiating people unnecessarily…”
		Referral issues	“… it probably took close on twelve months from first presentation to secondary care referral and then of course there’s some additional delay after referral to first consultant appointment” (H078) “Then you’ve got the delay in rheumatology seeing the patient. A lot of services are very stretched” (H072)
		“A bit of a revolving door”	“… they might have been seen by a service like ours before, been investigated, nothing maybe’s shown up at that point in time, so they’ve been discharged. And then it may be that they come back round or there’s been a bit of a revolving door until things are maybe a bit more clear with their symptoms” (H071) “… then we’re into potentially quite long primary care delay is going round that loop potentially a number of times…” (H078)
		Communication between HCPs	“… my direct line manager…. was traumatised when she found out I’d been emailing backwards and forwards with a consultant saying this is misdiagnosed. She said to me the protocol was that I had to go back to the GP, write to the GP for the GP to then question the diagnosis to my consultant, that was the standard operating procedure…” (H091)
Patient behaviour and characteristics	Patient behaviour and personality traits slowing down journey to axSpA diagnosis	Presenting to healthcare	“… even if you’re deliberately looking for it, and think, ‘okay, I’ll keep an eye on that patient’, and then they don’t reconsult within a couple of years, it’s kind of gone, and you might not see the same GP at that point anyway…” (H076) “… they just sort of say you know, just everyone gets back pain, it’s common, I didn’t go to my doctor I just sort of… it didn’t really stop me from doing anything…” (H083)
		Gender	“… there’s also gender bias I find, you know men tend to get diagnosed with AS quicker than females” (H091)
Patient/HCP interaction	Barriers caused by issues with the interaction between patients and the HCPs with whom they consult		“I find patients really struggle to answer stiffness questions and how you ask if something is stiff, it doesn’t really make sense to them, you might ask about night pain but actually not clarify well when is it in the night…” (H083) “…some health professionals I think stop hearing what they’re saying when they’re saying the same complaints over and over again” (H091)