The HOPON clinical trial: the research nurses’ role

After hearing from Professor Richard Shaw about the beginnings of the HOPON trial and its goals, we now turn to three of the research nurses – Paul Banks, Sarah Dyas and Shirley Pringle – to find out more about their important role.

The research nurses at the Mersey Regional Head and Neck Cancer Centre in Aintree help to run a number of clinical trials involving around 200 patients – HOPON is one of these trials.

We’re lucky in the head and neck oncology department at Liverpool; there are several big trials going on and lots of research taking place, which means that nearly all patients can take part in research in some form.

Some trials, like HOPON and SEND-001 are testing new treatments, but the Head and Neck 5000 study is recording the quality of cancer services for head and neck patients with the goal of improving care in the future. We also do a lot of tissue banking, so patients can give us permission to keep a small sample of their tumour for future research.

When a patient is referred to our department by their GP or dentist, the whole team meets to plan the best course of treatment for them. We discuss whether they might be suitable to join a trial. In an average week we consider 10-15 patients for some form of clinical research. For the HOPON trial it’s slightly different, because patients will first be seen in clinic by either Professor Shaw or a specialist dentist, who will then refer them to us. Around eight in 10 agree to join a trial, which is a great success for our team.

Timing is everything

Time can play an important part in the decision to take part in a trial or not

For most of our trials, patients need to make up their minds within a week of first attending our clinic. Their cancer is growing, so it’s vital they start treatment as soon as possible.

In these cases we’ll try to attend the patient’s consultation with their doctor because it’s important to see how they respond to their diagnosis and proposed treatment. We try to consider every patient’s mental state, because signing a trial consent form on the day they get a cancer diagnosis or the day they begin treatment can be very stressful.

With the HOPON trial, one advantage is that time is firmly on our side.

In these cases patients have already been successfully treated for their original cancer and are awaiting dental surgery. This is rarely an emergency and sometimes a voluntary procedure (such as having implants), so the patients’ stress levels are much lower. It also means they can go home and consider the trial for a couple of weeks, to make sure they are happy to take part and fully understand what’s involved.

What motivates the patients?

Most patients want to join HOPON because they genuinely want to help other patients in the future.

And because the cancer journey is over for these patients they’re often more willing to take part in research – they want to give something back because they’ve been cured.

These days many patients are often much better informed and do research on the internet as soon as they get a diagnosis. They certainly want information about all the treatment options open to them but whether they agree to participate in a trial is another matter.

What information do patients get?

Watch a video about taking part in a clinical trial on YouTube

The doctor first approaches the patient about the clinical trial, and then introduces one of us. We start by talking through the clinical trial information leaflet and make sure that the patient understands not just the trial itself but what’s involved in taking part. The patients can choose whether they want to join, and have the option to withdraw from the study at any point.

We are careful never to undermine patients’ faith in their doctors. Often patients expect their consultant to know everything and tell them what’s best. So we explain to patients that we do a lot of research here all the time. The reason we know which treatments to use when is through previous research, and the only way to keep improving cancer care is to continue to do more.

Patients don’t always understand what treatment entails. For instance, hyperbaric oxygen therapy involves lots of visits to hospital which can present a challenge to some patients so we make sure they are fully informed from the outset.

Patient difficulties with the trial

Most patients who enrol in the HOPON trial have already received radiotherapy – that’s six to seven weeks of travelling to the Clatterbridge Cancer Centre across the River Mersey for treatment, which is quite a journey. Many patients had to rely on specialised ambulances – which transport lots of patients at once – to get there and back. This sometimes turned a short radiotherapy session into an all day trip. So transport to and from the hyperbaric oxygen chamber was a huge concern for patients at the beginning. Once we realised this, we were able to arrange private transport and more patients were happy to enrol in the study.

Some of our patients are still working, and it may be financially impossible for them to join the trial. In my experience, for the majority of patients who decline to join HOPON, the problem is having the time to do it rather than the treatment itself.

What we can bring

As research nurses, we’re here to help the patients every step of the way and provide an extra point of contact. When patients take part in research, they are given more support and have a few meetings with us before their surgery.

We always start by making sure they understand everything the doctor said to them, and checking whether there’s anything they want to ask before going through the clinical trial details.

One of the best things about the job is feeling a valued part of the whole team, and the way we all work so well together. By having that one-to-one interaction with the patient at a really difficult time in their life, we all feel we’re an extra support to them.

The exciting thing about incorporating research into the core of the NHS is giving all patients the opportunity to participate. It’s thanks to Stand Up To Cancer and Cancer Research UK that we’re able to offer exciting trials like HOPON, which are improving patient care.

• Find out more about the HOPON trial
• Read the doctor’s perspective on the HOPON trial