Table 3.

Theme 2: needs (patient number, time point of interview)

Subtheme	Illustrative quote
Need for clinical oversight	You know, it’s the feeling that somebody will check those data. You know over a period of time, somebody’s keeping an eye on it. So, it’s not four to six months between people knowing how you are. (1, 3m) Yes, I mean, just because I’m doing it, I’ll still get all the support from the hospital, won’t I? (5, BL) But if I know that you're reviewing that…then that might actually help quite a lot with me not focusing on little changes, but just being reassured that you're looking at it, and if there is anything you're gonna pick it up and I don't need to monitor it myself. (6, BL)
Need for feedback	You'd sent me a message and said, yeah, I'm glad to see that return to baseline. And you showed no concern. That was actually quite good. I got that after the drop, so I was already feeling anxious, you know? Yeah, but it was nice to get that little bit of feedback. (1, 3m) So I'm sort of trying to really get a sense of what it actually means in terms of disease progression, so I can only really get that in a discussion. (8, 1m)
Need for understanding	I don't fully appreciate and understand that report and I’d like to understand how it’s read properly, but, most importantly, how I can compare that with previous reports. (7, 3m) …you get the data and are then trying to understand. If I don’t have the understanding to come back to it, I’m worse off than not knowing, almost. (8, BL)
Need for ownership	I think it’s nice to chart progress and hold records. Will be a very simple record on my phone in this case, but before I've been holding them written down. (3, BL) But I still log it on my own chart, you know? I've got a little spreadsheet. You have to keep track of things. (1, 3m)
Need for data	I think…about…I think about all those data points…they’re covering quite a bit of a span. My mind naturally thinks you want to measure something that is deteriorating on a far more regular basis. It is deeply ingrained in my mind and professional behaviour. (8, BL) Okay, so I’m doing all of those things in terms of my numbers, if you like. So, my weight, my sat levels, my spiro scores, my pulse rate, my resting pulse rate and I’m recording all of those, number of steps I do in a day, the number of miles I cycle. (3, 6m)
Need ‘to know’	As I said, I want to know exactly what is happening. My lifespan is limited, and you can almost see the horizon looming in front of you very quickly. I want to know basically how quickly this condition…if it is progressing at all and how quickly, so that I can adjust my lifestyle. (2, 1m) It’s nice that somebody can tell you what the true picture is, whether it’s good or bad. It’s still important, I think… (1, 3m)

BL, base line; 1m, 1 month; 3m, 3 months; 6m, 6 months.