Table 2.

The patient perspective of facilitators of diagnosis

Theme	Brief description	Sub-themes	Example quotes
Patient behaviour and advocacy	Aspects of patient behaviour and advocacy of patients that speed up diagnosis	N/A	“… I thought, ‘Do you know what? I’m not going to home’… eventually I get admitted into the surgical ward. Got a CT scan the next day… and this young consultant, ‘I know what’s wrong with you’. I went, ‘Oh, don’t tell me it’s a kidney stone’, and he went, ‘No’, and he called it, he went, ‘It’s called sacroiliitis’” (P018) “… my mother and father were fighting to get people to just find an answer and they contacted my GP about it and that’s how I first got involved with [HCP] at the [Hospital] and that’s how I got my diagnosis.” (P035)
Patient characteristics	Patient behaviour and personality traits speeding up journey to axSpA diagnosis	Triggers to consultation	“I was in agony, absolute agony. So that was probably the main turning point for me… obviously went to the doctors about that…” (P002) “… I was constantly waking up at 2am and watching TV because I couldn’t sleep because my back was hurting… I was thinking this is crazy because it shouldn’t be impeding your life that much. So I went to the GP and I guess that’s the point at which you would say the journey to diagnosis had started…” (P003)
		Point at which patients realised their symptoms were something severe	“I’d been complaining to my partner that my vision was a bit blurry in one of my eyes and when we were out at the weekend for a walk and thick fog and mist rolled in… I said to him, ‘that’s what my eye looks like.’ He looked at me and said, ‘that’s not right.’” (P010)
Good practice in healthcare	Instances where patients’ healthcare experiences accelerated their journey to diagnosis/aspects of healthcare that can be improved		“…in the hospital my experience was great, when my history was being taken it felt like the first time I’d properly been listened to… when she diagnosed and said I’m going to hand you to my colleague who specialises in this… I was part of this well-oiled machine…” (P030) “[My GP] referred me to rheumatology. Whether she thought it was AS, I don’t know at that stage. But she knew that it was a problem that could be identified at rheumatology or investigated.” (P003)
Education and awareness	Means of educating and raising awareness of axSpA	HCP awareness and education	“I’d want to make sure medical professionals were educated in all the symptoms and how it can present itself, so arthritis is at least put on the table sooner as a possibility of someone’s condition.” (P035) “I think [what is desperately needed is] undergraduate training. There needs to be some way of auditing the training that’s going on to make sure it’s up to date for GPs, rheumatologists and AHPs as well.” (P021)
		Patient and public awareness	“… I think just raising awareness of it in terms of the public as well, so the public are going in and saying, ‘could I have [axSpA]?’” (P021)
Serendipity	Several patients attributed their diagnosis to a single, seemingly arbitrary, circumstance or coincidence		“… my aunty… was sat at the dinner table with Christmas… There’s me moving my entire body to speak to somebody and she was like, ‘What on earth have you done?… Right, I want you to come into my clinic’… checking my neck and the movement (she) said after seeing me twice, ‘It could be [axSpA].’” (P004) “The only reason that she got the ball rolling is because her dad has got ankylosing spondylitis… she just went, ‘I think you’ve got a thing called AS. ….. Let me send you off for an MRI’, and she was the first person to know that there was a link to all this stuff and actually to check it out.” (P025)
Theme	Brief description	Sub-themes	Example quotes
Patient/HCP interaction	Barriers caused by issues with the interaction between patients and the HCPs with whom they consult	Patient communication	“I’m angry at myself for not having made more of a fuss…the AS has got worse over the last couple of years and I'm thinking, 'Why didn't I say something six months ago or a year ago?'” (P010) “… so I’ve got this pain that I’ve had for a few years in the lower back and now I’ve hurt my upper back as well… so for three years before then I already knew I’d had it… I’ve never complained profusely enough to the GP to get it looked at if you know what I mean.” (P033)
		HCP communication	“… I was being completely dismissed and made to feel like I was overreacting… I just felt disbelief… like you’re banging your head against a brick wall.” (P021) “It was very much a, ‘go away. What more do you want us to do?…’” (P004)
AxSpA is difficult to diagnose	Barriers caused by the complexity of axSpA diagnosis	Not presenting in the classical way/unclear and inconsistent symptoms	“I suppose that it didn’t help that I didn’t probably present in the classic way with I’ve gone in with a bad back that’s lasted three months… it’s with it starting higher up… because my joints are kind of more affected in the beginning. With my knee first up… I think that was probably all against me when it came to diagnosis.” (P002) “It would come, and it would go. You know pain would return and I would think, ‘oh that’s weird, I don’t think I did anything to make that pain come back’, and then it would disappear again.” (P032)
		Alternative explanations for symptoms	“I was very, very sporty and so I did have various aches and pains, but I always put it down to playing rugby or whatever… I was a bit obsessive, so I figured I’d damaged myself.” (P010) “I was screaming in pain with pains in my legs – and I was told I had growing pains…” (P030) “… when I was about 25, it was the first bout of really bad back pain I had when I was pregnant and… of course it was blamed on the pregnancy… basically that was it. ‘You’re pregnant, it’s sciatica, baby’s laying…’”
		HCPs missed symptoms suggestive of axSpA	“… my MRIs lit up like a Christmas tree with inflammation but nothing on the x-rays. No, you know, evidence of bone-fusing, so that was what was delaying everything…” (P035) “… manifested into different things, which again are pointers to AS and again nobody picked it up… nothing was flagged with it or anything…” (P025)
		Missed opportunities for diagnosis	“… if they’d just scanned that little bit lower, they’d have seen I had scoliosis further down and sclerosis… which is one of the first major obvious things in AS I believe.” (P002) “… [my rheumatologist] looked through the notes and said, ‘to be honest, I don’t think there’s much point me doing anything else… I can see your entire history and I can’t believe you’ve not made it here before.’” (P004)
Patient behaviour	Patient behaviour and personality traits slowing down journey to axSpA diagnosis	Patients’ acceptance of their symptoms	“I mean at the time I just put it down to it was just one of those things that happens to people but yeah, you’ve just got to get on with life, I suppose.” (P004) “I’ve always been in pain for years and years and you just get on with it, don’t you? You have to. You’ve got a family. You’ve got things you need to try and do” (P018)
		Low confidence in healthcare	“I just gave up on it… I’d go to the GP, my back was still hurting, so they’d send me for more steroids, they never looked at why my back was hurting… I just thought there’s no point in complaining any more…” (P033) “I'm not going to bother with the GP because all they do is give me painkillers. I could have gone back earlier. In my mindset, I think I closed off the GP route.” (P024)
Lack of awareness of axSpA	Limited 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	“[By the time I was diagnosed] all my joints had swollen up, my hands, my feet… I couldn’t believe all my joint pains were related to this bad back I’d had for years…” (P002) “When I got diagnosed, I had no idea what it was. My family hadn’t heard about it. My friends had no idea what it was.” (P025)
		Lack of awareness in healthcare system	“I mean I’m sure my first doctor had probably never even heard of it…” (P015) “I don’t think it ever occurred to any GP even when I hit 50 and all me joints had swollen up I don’t think it ever occurred to them.” (P002)
Sub-optimal practice in healthcare	Configuration of, and practice within, healthcare services slowing down journey to diagnosis	Lack of defined referral pathway	“I think there needs to be more access to.. the referral to a rheumatologist… it can take somebody years just to get that referral because there are a lot of GP’s who are reluctant to do so…” (P033) “…20 years’ worth of back and forwarding…” (P015)
		Lack of communication/co-ordination between different healthcare services	“There doesn’t seem to be an umbrella department that says the eye people should talk to the rheumatology should talk to the GP… There’s nothing, no branch connecting all these things and yet all of the symptoms are connected as far as I can see.” (P003) “I think it would have been easier for them if it was the same doctor, they would be picking it up ‘cause I don’t think doctors have got time to sit and read through everybody’s history before that patient walks through the door.” (P025)
		Insufficient consultation time	“… I don’t think your quick five minutes or ten minutes they allocated are enough to go over everything you need… Because we’re so used to hiding our pain, getting to talk about it and to say exactly what’s going on takes time sometimes.” (P002) “… a 10-min visit if you’re lucky and it’s a mad rush in and back out again. You trying to remember everything you say and you come back and you forget half of what you wanted to say…” (P018)