TABLE 3.

Illustrative quotes.

Quotes in support of PIFU or concerns around routine FU	Key findings
Patient: ‘I am very, very anxious when I am coming [to hospital follow‐up] and probably for a couple of days before’. 13 Patient: ‘It becomes a bit of a pain coming in every 4 months, every 6 months, when actually there's not anything wrong with you and it's a waste of your time, bus money, petrol money, whatever the consultant's time, when there's actually nothing wrong with you’. 22 Patient: ‘I get upset looking at the leaflets—will call if anything worrying. Coming to hospital would bring it all back and I would rather not think about it’. 25 Surgeon: ‘It's prescriptive and certainly not evidence‐based. it's a little bit archaic, and I think, for a long time, many of my colleagues have felt that we could look at a more sensible way of following up patients, and certainly more evidence‐based’. 32 Oncologist: ‘I think we're probably all in agreement that there is room for improvement in the way that we see the patients on their follow‐up protocol. It sounds like we've all got a very similar, traditional one‐size‐fits all approach to our follow‐up’. 32 Lead cancer nurse: ‘We do have patients who come back who had symptoms weeks ago but thought oh it's alright I've got an appointment coming up’. 6	Patients associate routine FU with anxiety and inconvenience, and HCPs see the system as inflexible and outdated.
Patient: ‘I feel that it's been good that I could phone the same nurse and talk to her and if I was specially worried, like in the beginning, then she arranged an appointment with the doctor so it went very smoothly, I think’. 20 Patient: ‘The nurses were brilliant. I had 45 minutes longer than I would with a doctor so it was good as they could explain everything in detail’. 25 Patient: ‘I used to dread going and I do not dread it any more.. . not because I was worried about what the outcome might be, it was a heck of a journey from here to Southampton and the waiting around etc.’ 15 Patient: ‘Well I think it gives you confidence, oh what is the word I am looking for, peace of mind you know, that they [telephone access to breast cancer nurse] are still keeping an eye on you’. 15 Patient: “I will go back if I need to, I think the top and bottom of it is, if people have got a phone number to ring, they are more confident, aren't they? Like I have got [name of specialist nurse], it is just there if you need it’. 13	Patients experience PIFU positively and feel supported by it.
Patient: ‘I kind of go in there and I feel like it's a bit of a waste of their time and my time. If I had symptoms you kind of would call them … if you had any problems you could possibly ring up anyway and say “I don't feel well” so it's basically like when you self‐assess, you are the one that is going to be self‐assessing anyway aren't you’? 13 Patient: ‘It stops me having to worry about “I've got an appointment here to come and see this person.” I'm looking out for my own symptoms and know that if I ring up the secretary or the clinic and say “I have this issue, can I come and see somebody?” I can come in. I don't have to go via the GP is what I'm saying’. 22 Patient: ‘In terms of [PIFU], it will suit me down to the ground, in that I kind of want to, as best as possible, move on from it, and this allows me just to actually pay attention to my body and if something's wrong I flag it up, whereas I think if I had to wait once a year for my check‐up I would just wait for my check‐up if I thought something was wrong …. It just forces you to take responsibility for your health a little bit and pay attention a bit more. I just wanted to get it done and dusted and out of there. I don't want to be followed up really. I don't want to be reminded that it happened’. 23	Patients view taking control of managing their own follow‐up as positive.
Surgeon: ‘Patients who've been able to quit smoking or alcohol use, or semi reduce it significantly, might be at low risk of recurrence, and perhaps those are patients who could be on a less stringent follow‐up. So, I don't know if you are going to stratify according to risk factors as well’. 32	HCPs see the need for tailoring PIFU depending on risk.

Quotes on concerns around PIFU or support for routine FU
Patient: ‘I think I would have preferred to come back and seen, physically seen someone… I think it's more just reassurance to meet somebody face to face about it. It's a bit more personal’. 22 Patient: ‘I would have liked more appointments with the consultant for reassurance’. 25 Patient: ‘Anyway, I think for a lot of people seeing a doctor gives them confirmation, you're happy to pay the fee’. 20 Clinical nurse specialist: ‘You do always get that group of patients that want to come in and feel reassured just by it, it sounds crazy but just by having the doctor's hands on their neck and things like that they basically feel reassured’. 32	Patients and HCPs view the reassurance from routine FU as positive.
Patient: ‘The only barrier that I think would stop them ringing in is if they worried that it has come back. Because you've got to get your mind around that one first before you go and ring’. 22 Patient: ‘I mean you can examine yourself but you just need somebody to confirm and say yes you haven't found anything or there isn't anything going on there’. 15 (Patient in routine FU) Patient: ‘Prefer not to rely on self‐diagnosis’. 24 (Patient in routine FU) Patient: ‘Once you're discharged you don't sort of have any backup for potential reoccurrence, and I almost feel out on a limb. Every lump and bump, you know, you're not trained to say oh, that's a fatty lump, there's no information there to help you. So every time you get a lump and bump you just go into oh my god, here we go …. … it's that void afterwards, that that is my only criticism, because, it's almost like it's a loaded gun and you're waiting for somebody to fire the bullet’. 23	Patients worry about relying on self‐assessment for symptoms of recurrence and avoid checking due to fear of recurrence.
Patient: ‘It would be really handy to have an e‐mail address, or even a number that you could text, not expecting an instant answer … because by the time you've rung two or three times and they've not picked up and you don't really want to leave a message, you get to the point where you think maybe it's not that important, and I won't ring again … So it's more an access issue, in that in your own head you can quite quickly downgrade it if you don't want to be a problem and they are obviously very busy’. 23 Surgeon: ‘A small group of [lower socioeconomic status] patients will say “just do what you think is right.” They don't want to know, you know? I would not trust them, not because I don't like them, it's just that I can't trust them to make a sensible decision to come back if they have a concern’. 32 Consultant nurse: ‘What I'm finding is with the, the older patient is that they struggle with that ownership being put back onto them ‘cos they're used to the paternalistic approach … younger patients seem to accept it better’. 6 Oncologist: ‘[patients may not attend clinic] because they're holding back a problem or they're scared. And it's really how those things get identified, because this potentially can be the way that people keep a problem [hidden] that we would have seen by looking in the whites of their eyes’. 32	Patients and HCPs have concerns around access to PIFU.
Clinical nurse specialist: ‘I think the main concern was if it [patient‐initiated follow‐up] would add to the workload’. 32 Surgeon: ‘There will be some people [clinicians], I think, that the way they approach risk, or just their attitude, they may just say, ‘Well, no, I'm not willing to engage in that [patient‐initiated follow‐up]’. 32 Survivorship Network Manager: ‘… you need to manage patients expectations around that being the sort of follow‐up that they can expect … if you're not careful and you follow up people up at sort of arm's length in that way, it might actually exacerbate the problem of people feeling isolated rather than improve it’. 6	HCPs have concerns around change and implementation of PIFU.