Table 5 Illustrative data extracts from theme Q3: Confusion and uncertainty regarding GVHD symptoms—‘Is this the GVHD?’

Difficulty identifying symptoms

I have a lot of tummy problems and I think, 'Well is that part of graft versus host?' And you think how… without having an op to have a look, how would you know?”—P1

“I get intermittent gut pain that I'm not really sure why that’s occurring but suspect that it might be some sort of mild manifestation of GVHD.”—P3

“I suppose the difficult thing… the difficulty I had was that I knew there was something wrong, you know, quite early on, and I remember just saying that at the end of May session with one of the consultants, I knew there was something not right. But GVHD is so hard; you don’t know what it is yourself, so it’s so hard to really put a finger on it, and if you haven’t got an infection or an obvious sign of something wrong with you, you know, like a rash that they tell you about, it can be very difficult itself to understand.”—P6

“It's difficult to sort of work out what's GVHD and what’s just, you know, mixture of age and lack of practise.”—P2

“Then about 6 weeks ago/7 weeks ago, I started getting breathing problems, and I had to see the XXX and CT scans and they felt that the cause was GVHD in my lungs, and so they prescribed some high course dosed steroids which … they weren’t sure whether it was but they felt that to be on the safe side they needed to assume that it was GVHD because they didn’t wanted it to get worse.”—P5

“I look at something and I think… ‘is that GVHD or what or is that just me?' I've had sort of problems recognising it.”—P5

“Also, it's difficult to sort out, for example, the actual effects of the GVHD from some of the side-effects of the medications.”—P8

Accessing multiple healthcare professionals

“I don’t know what I thought I had, and I went to see a pharmacist; I went and saw my GP. Everyone drew a blank. And then I… and then I suddenly thought, 'I wonder if it is anything to do with graft versus host.’ And … anyway contacted the hospital and went in for an appointment, and yes, it was; it was graft versus host in my mouth. So, and nobody could explain why it had suddenly come back after… what, it was 12 years.”—P1

“They thought it was lymphoedema, one part of it. So, I went to the lymphoedema clinic and the lymphoedema nurse said, 'No, that’s not lymphoedema, that’s … that could be something else.’ So, when I went back in to see the normal nurse they said it was the GVHD, and I was literally within 2 min sent through, pushed through, put on and I think it was like the next day or 2 days I was being talked about and obviously that was… I was back on the treatment tablets.”—P4

Lack of certainty about cause of symptoms

“It seems to me hard for the doctors to tell as well to be honest. I’ve asked them about the reason for certain kinds of symptoms, and they say, 'Well, to be honest, you know, we see this but we're not really sure why it happens.'”—P8

Seeking other sources to self-diagnose

“But then within I think about a month I started getting some very trivial skin signs. I went off to hear a lecture, so it was given by the dermatologist … but this was just at a meeting in Nottingham that had been organised by the Anthony Nolan Trust. And she talked about the signs and symptoms of GVHD, and I realised then that that’s what I was experiencing and asked to see her in the clinic at my next visit, and she confirmed that I had GVHD.”—P3