Table 3 Initial list of codes and themes from the HCP interviews

Practical barriers

Workload concerns

Under-resourced staff

Time in clinic concerns

Set up of clinics

Clinics busy

Other trials ongoing

I think one of the things we are facing at the minute are just how busy clinics are and there’s lots of the new technology coming in like new electronic systems, which means clinic time is squeezed even more. So what I am certainly finding is I am spending less time with patients and more time at a computer screen, and I am sure that would have a knock-on effect potentially with trials.

Radiotherapy is the point which the majority of people end their treatment. Now there are ones that do not get radiotherapy and come through us so there is no one shoe fits everyone. So, if we had a properly integrated service, which we hope to provide at the future, but do not at present it would be more straightforward. But it is not integrated now and because it’s not integrated we have problems.

At the moment because of the design of our department, the patients are not focused into one single prostate cancer clinic or kidney cancer clinic, we are trying to get the patients in a focused cancer clinic, so the scenario where you will have these patients coming one after the other through.

And we have in terms of the trial portfolio there’s several clinical trials ongoing but I do not think any, I think this would be a very good one to recruit patients into because I do not think there will be any conflict with any other research projects going on.

A lot of the patients may already be in a clinical trial so are having QoL measures as part of that. So it’s some of the validated QoL ones that are used, validated for head and neck.

Yes, and that might sound harsh but the fact is that we probably have potentially half a dozen studies to recruit to and even with the best will in the world and it will not happen with a lot of additional admin to do.

One of the biggest thing is our clinics are really busy and we are really short on physical space. So, there’s a temptation people will kind of exhaust things if they think it will delay. But if it’s a matter of asking the screening and saying they will be contacted later I do not see any reason that we could not get good recruitment. It’s very quick process, only 30 s so I cannot see any problem at all.

Clinical skills barriers

Terminology difficult for patients

Criticism of current service

Remembering

I think the wording would probably need to be changed – I think those words are all very understandable to us as clinicians and scientists and things involved but if I said to my average patient, how is your QoL, they would not necessary know what that means so I think there would need to be some description of what we mean, like are they enjoying their life, are there things they would like to do that they cannot pursue. So, I think it would have to be broken down, and likewise sort of physical vs the mental so maybe use worked examples, but yeah I think they’d be three very good punch points to use. I think more in lay speak because those are terms that roll off our tongue, but if you actually say it to a patient or carer they will be like ‘What do you mean?’ and the likelihood is there will be assumptions made and therefore we won’t get the right information

The main barrier was that because we think we have quite a good set up already, one of the nurses was a bit sort of suspicious of the study that it was here to sort of investigate what we do or if you see what I mean. But X was quite good in that he was here to help us to give us evidence based on what we do and that no patient would receive less than the current standard of care. Again, I think addressing those concerns as most of the work will be done by nursing staff not medical, addressing those concerns and focusing on those would be the best way, reiterating it is a study to help us, to show that what we already do in some alloyed fashion is already effective given us an evidence base to show it’s cost-effective and all those supplementary issues. We are keen to get going and be involved in studies like this

That bit is easy, the difficult bit is remembering and identifying the people who and remember to ask actually.

Patient barriers

Patient transport

Patients with MHP

Group of patients unengaging with psychology

Gender barrier

Cultural or language barriers

Education levels

Individual patient response

And a lot of, a sizeable proportion, shall we say 30% come from further afield So they are often an hour away by public transport.

Patients who, quite a lot of our patients have mental health problems, which might mean they do not want to engage in this sort of thing.

Myself and X felt that there’s definitely going to be a group of patients that will, for whatever reason, not want to engage.

The patients themselves, despite you know, you could sell them whatever but they do not want to participate.

In terms of patients coming forward, I think there are just some patients an intervention is just not their kind of thing. There are some patients you will find will want to access everything and there are some patients that will just want to go away and forget it all.

Another thing that sometimes impacts on these things is especially male patients, now I do not want to be sexist but it’s just how I find it, with head and neck cancer it’s very much still such a male dominated cancer but often they do not like these sorts of things that touch on the psychological aspects, because they are a man and they have got to be strong and these sorts of things. So I think that and that was something I talked to X about that with a lot of these patients that would be suitable for this, we know they need help but they do not and it’s how we actually bridge that gap and try and get them into an important study like this and ultimately help them

Yes, rather than just, some of them just immediately shut down. I have sometimes mentioned patients going to our cancer support centre which is an excellent resource, they offer not only counselling, but complementary therapies and psychological input but often patients will not even let you explain what it’s about its all ‘No, no, I do not want any of that’. It is bridging that initial sometimes very negative impressions of that.

The majority of the patients I see, we can say 80–90%, speak enough English to understand and be consented for an operation so I do not think language barrier will be a problem. In the few cases where, I think east European and Middle Eastern, people who are not speaking any English, but they are very few, and regarding cultural, difficult to say, maybe there are some cultures that would accept a little bit less, that would be less keen to participate in a trial.

The other thing with barriers for our own group would be language. Non-English-speaking people, we do think about how we will introduce the study to them. We might have to give leaflets in Bengali, for instance.

Because it’s extraordinarily cosmopolitan and so people come from many different nationalities. I counted over the years about 80 separate nationalities I have seen and it’s extraordinary, you know most people 20 but 80, that’s something quite different. Most countries you can think of I have seen people from, not all. I have not seen anyone from Chad.

It’s not language, it’s culture because people have a lot of people of non-European origin, non-western European origin, intrinsically they do clinical studies, they enjoy it. So, our recruitment is always lower than it should be, just because of that cosmopolitan affect.

Head and neck, we have a big Bangladeshi population in London and various other ethnic minority groups and again it’s really again it’s, from your point of view, if patients were, English wasn’t their first language would they be excluded or would you have translation facilities?

Patients that do not have English as a first language and require interpreters,

not all but a significant amount of our patients are from a low socially economic background and do not always have great educational skills. But in an interview, they would be fine but I know sometimes they struggle with the long questionnaires.

I think it’s the patients themselves, how enthusiastic they are about things, because they are all individual so it would be how the patient feels about things. But you know anything that will improve patients’ QoL is worth doing, so you know, we’d be totally committed to it.

Motivators to improve recruitment

Regular research contact

Peer support in intervention

Patient benefits

Individual benefits

Factors increasing confidence explaining RCT

Ease of recruitment

Communication throughout team

Research member in clinic

Reminders

Feedback from patient

Academic consultants

And I think an academically driven consultant is a great help, which is the case here.

Feedback from patients about how it helped them fed to the recruiting clinicians so we can see how it’s being helpful.

Positive feedback from our patients saying it had improved them, obviously that would motivate us.

If we had notices up to remind us.

Also making sure all members of the team, whether it be me, a CNS, a ward nurse or a radiographer, are saying the same thing. Because it’s almost that attrition and you say it enough times to a patient and they sort of give in. so I think that’s an important thing to make sure we are not saying different things and it’s not just one of us continuously saying it but it’s the team that’s looking after the patients that are saying it.

Ease of recruitment is the biggest motivation, that’s number 1

We have not got time to do additional things in clinic and this is a simple issue, if it would be a very substantive disincentive if there was a lot of paperwork to do and any paperwork of any sort would be potentially a problem. Make the process as easy as possible and you’ll recruit more patients.

The key thing is essentially we generally are happy towards any kind of research as long as it’s not (unheard) making us run around emailing, calling, wait a second wait here, two hours, there will be someone coming or going through paper work or explaining things. That is not what I can do

that would be possible with more written information, further information and probably short teaching sessions of what would be expected

around the time it will all kick off. I'd want more information and to be kept up to date and things like that but yeah no problems with discussing trials with patients

Your name on the paper would be good, would be an incentive.

If you say you are recruiting enough patients to the study, you will be part of any scientific production coming out of it, it depends.

But obviously that would be an incentive, being acknowledged in the paper is always, generally speaking, an incentive for the contributors.

For CNSs in our team the advantages of them being seen to participate in recruitment of trials is obviously a good thing on their CV and it gives them a wider scope for their job as well – all of the advantages that come with being involved in any kind of research.

Just the fact that trials help in the future, so it’s just the fact that every trial is successful and will help many more patients in the future.

You know it may well be that by identifying these patients early on they may not need so many appointments later on because you deal with a lot of the issues and concerns they may present with later.

I think the motivation should be there already, especially within oncologists, I think its interweaved into our beings that the only way to improve the care of our patients and mark the quality of our care is through trials, so I think that’s the one thing. I think lots of people can make lots of excuses but ultimately it’s about quality of care and I think some people may need hand held because it is additional work on an increasingly busy job but I think, my hope is my colleagues see it as I do, that it is as important as giving the radiotherapy or delivering the chemotherapy to patients, and there’s no role in oncology if you are not looking to better things all the time

As long as there’s a clear process for referral and that it’s beneficial for the patients.

Well sometimes I have found is sometimes getting other patients of a similar background and age and things have a chat with them, but sometimes seeing other patients on the ward in a similar situation.

I guess having someone from the research, your end of things keeping regular contact with us would help, these things do drift sometimes if we do not get any feedback and regular contact, that’s always helpful.

So, you need to have a dedicated research resource to allow clinicians to interact.

And when I took over that trial we were in the bottom of recruitment as no one was taking an interest. I spoke to the CI and now they have got a research nurse that comes to the clinic, sits there. So, I spend the first 15 min of my clinic sitting with them and identifying patients. And then I sit with the patients and introduce it to them, which means they are more receptive to the research nurse. Half of the research nurse job is done. As a consultant, you do have a lot of power, because they trust you more.

It will probably help to have someone with a link to the study in clinics. We certainly know the best recruiting studies are the ones that have either the research assistant or who ever actually in clinic reminding clinicians of the study, making sure we are asking the questions and giving the patients information.

So that is what helps a CNS or a research person around in a surround that is not clinical outpatient basis so it is like in more informal. Time is the only factor, the only problem.

I think rather clinic in breast, it would be useful to have the research fellow there because they have so many cases and it is a bit different.

The key point is the MDT and the MDT coordinator, and managing the MDT, so maybe we have quite a lot for research with, for example, UCH on cancer study in preop patients and what they were doing. There was a research fellow at every MDT that was sitting there, coming with us and listening to all the cases, and then he says particularly when the stuff at the end or during the consultation, ‘Well, if you are happy I will do the CAT study for this patient’. We say ‘OK, fine’ and essentially they were arranging something straight away – the patient had the CAT scan within the research at UCH. But obviously they were present constantly and we never object, we never say ‘No, I do not want my patient to go through’, but there was always someone that was there if they were saying to us can you identify every single patient, yeah I am sure that if you occasionally we would not identify the patient as maybe we forget about the study with so many studies going simultaneously we do not think who has all the characteristics to be involved within the study.

With my experience, with previous studies, with a research nurse everything goes well and then we do the follow-up 12 months or 24 months later, when we do not have a questionnaire then it all becomes a nightmare. So, I think the most important barrier is to have someone delegated to do all that study, a centralised research person doing all that, then obviously would be easier.

So, if I understand you correctly, we would be required to fill out a questionnaire – because what would be ideal is if you had a member of staff present within our clinics. Is that possible?