Quotations
| Main theme | Quote number | Quote |
|---|---|---|
| Drug administration and management | Q1 | It [ciclosporin] goes on over a longer period of time obviously, so the need [for nurses] to continually make up bags over a longer period of time rather than just the one off infusion. (PI) Recruiting well |
| Q2 | It's [ciclosporin] time consuming for the nurses and slightly messy…it's complicated and it's work for the nursing staff. (PI) Recruiting well | |
| Q3 | Having to make it up [ciclosporin] every 6 hours is time consuming, changing lines, always having two nurses to check it because the way the GI unit is split…there's a corridor between the two wards so obviously bed cover etc but only to have one trained [nurse] each side is a bit difficult … geography of the wards … we've no one else to check the drugs. (Nurse) Recruiting well | |
| Q4 | [Ciclosporin] is fairly cumbersome for both the staff and equally importantly for patients because once you are tied to the drip and associated drip stand, it restricts patients moving around. (PI) Recruiting well | |
| Q5 | Infliximab has an advantage (over ciclosporin) in that it's just a two-hour infusion and then it's done… there's no problem with infliximab, I think it's a good drug to administer, I think it's an easy drug to administer… I like infliximab because once you've done it, you've done it for 2 weeks. (PI) Recruiting well | |
| Q6 | Tend to use ciclosporin as acting more quickly. (PI) Recruiting well to cohort but less well to RCT | |
| Q7 | This is the one thing I don't like about infliximab, because there is no data to give us a clear timescale or timeline for decision-making. (PI) Recruiting well | |
| Q8 | I'm always a little bit more nervous with it [ciclosporin] … and I think that's from the side effects of renal impairment … I think the side effects profile of ciclosporin, still concerns us more. (PI) Recruiting well | |
| Q9 | Potentially quite significant side effects… slightly uncomfortable feeling about it [ciclosporin]. (PI) Recruiting well | |
| Q10 | It's [ciclosporin] time consuming with regards to observation, particularly on a busy ward when you've got one nurse to 10 patients, it can take quite a huge part of your workload. (Nurse) Recruiting well | |
| Q11 | We have to monitor this patient closely for any side effects … it [ciclosporin] takes three hours because you've got to do obs [observations] for a couple of hours, but then sometimes we tend to forget because we get busy with other patients … so ideally it should be one to one. (Nurse) Recruiting well | |
| Q12 | Most of the time it [infliximab] goes without incident. (Nurse) Recruiting well | |
| Q13 | Have only ever seen minor reactions to the infliximab. (Nurse) Recruiting well | |
| Q14 | We now have to request the funding for patients with UC on long-term infliximab so that's a bit of a challenge and it means that decisions are made differently to whether a patient is going onto maintenance infliximab. (Nurse) Recruiting well | |
| Q15 | It's already an issue because we can't really treat as maintenance with infliximab so obviously if a patient responds well we've had to get exceptional funding and things like that so there is a case for it I think. (Nurse) Recruiting well | |
| Personal preference and trial involvement | Q16 | My personal view is that they probably have equal efficacy, I think infliximab has less side effects so if I was given a free choice, if I was asking for me or for my loved ones, I would opt for infliximab. (PI) Recruiting well |
| Q17 | When a patient was given infliximab I was rather pleased and when they were given ciclosporin I was less enthusiastic … we wondered about the tolerance for the patient and convenience for the patient. (PI) Recruiting well | |
| Q18 | I prefer it when they have infliximab … I think it's easier for the patients because it's just one infusion…it's a couple of hours, instead of being hooked up. I mean keep in mind they have profuse diarrhoea… I think it's easier to administer as a nurse and it's easier for the patient to receive. (Nurse) Recruiting well | |
| Q19 | Rather more relaxed about it [ciclosporin], paradoxically, simply because I know when the IV infusion is stopped then the drug disappears. (PI) Recruiting well | |
| Q20 | I've used it [ciclosporin] for a very long time and I'm comfortable with it. (PI) Recruiting well | |
| Q21 | If the result was that ciclosporin was a lot better we'd use it and if the results were that infliximab was a lot better we'd use it. (PI) Recruiting well | |
| Q22 | The difference (between drugs) is not sufficiently dramatic that I would say it was unethical to put them into a randomised study. (PI) Recruiting well | |
| Policy development and drug regulation | Q23 | There is an issue of cost of course, [infliximab] we're pushed all the time to stop it for cost reasons. (PI) Recruiting well |
| Q24 | It's very hard to find anyone who supports the NICE guidance in its present format. (PI) Recruiting well | |
| Q25 | I sort of treat it with a bit of contempt. (PI) Recruiting well | |
| Q26 | You can usually find a reason why ciclosporin would be contraindicated…I don't think it's a particularly sensible NICE guidance based on the lack of evidence that they have to make their decision and therefore in all honesty because we can, we slightly ignore it. (PI) Recruiting well | |
| Patient benefit and negotiated care | Q27 | I like to tailor the treatment to the patient…to the patient's previous history, patient's wishes (PI) Recruiting well to cohort but less well to trial |
| Q28 | The drug we choose ultimately depends on the patient. (PI) Poor overall recruitment | |
| Q29 | It's whatever is best for the patient … I think it's different for each patient and I think that they need to be given the choice. (Nurse) Recruiting well | |
| Q30 | Our surgeons are very active in decision-making, and have multi-disciplinary team meetings twice a week. (PI) Low overall recruitment | |
| Q31 | Care is negotiated with the patient, patient input is important, but pre-defined pathways are according to previous discussions. (PI) Recruiting well to cohort but less well to trial | |
| Q32 | Patient views are as important as anything else, combined with weighing up risks and benefits, we involve them hugely. (PI) Recruiting well to cohort but less well to trial |