My colleagues and I support the patients from the moment they are asked to consider a clinical trial to the point in time when they have completed the study for whatever reason that may be.
Patients can ask for, or are asked to consider clinical trials at various times throughout their treatment; this could be at diagnosis or after other treatments have stopped working. I get involved at the very beginning by discussing the study with the patient and give them a patient information sheet which has full details of what to expect if they enter a clinical trial.
Sometimes this happens in the clinic or it can be done via telephone after the consultation, but it is often both; it is important to ensure the patient does not feel coerced at all.
My role is to ensure they receive all the information they need to make an informed choice about the best treatment path for them. This means I need to have knowledge of not just the trial protocol but also the treatment they would receive if not on a trial. There is no limit to a number of questions I get asked and what is important to one patient may be different to the next patient.
Once a patient has made a decision to enter a clinical trial I plan with them the next steps.
These include various screening tests such as scans and blood tests that we do at The Christie and sometimes tests at other hospitals, for example eye tests. This can take a lot of co-ordinating to ensure the least number of visits for the patient. I am constantly keeping the patient informed of what is happening, for example the results of tests.
Screening is done to ensure the patient is eligible for the trial and to ensure that they can receive the trial drugs safely. Not all patients who consent to a trial enter one, they may have a blood test out of allowable range for example, which means they cannot enter a trial.
Managing their disappointment when this happens can be challenging, especially if they have come to The Christie specifically for a particular trial.
As a centre specialising in melanoma treatments, patients can come from far and wide.
From the outset, I ensure they are aware that being considered for and consenting to a clinical trial is no guarantee that they will receive treatment.
Communication is essential in my role, not just with the patients but with all the departments that support research at The Christie. I work closely with the radiology team to request scans and with the pharmacy team to ensure they have the drugs required and that the prescription is ready.
When all the checks have been done and a patient accepted onto a trial, I then schedule the patient for their treatment. This might be in our dedicated clinical research facility or in the main chemotherapy unit depending on the treatment. The Christie has a strong research culture which is evident throughout the organisation, within all the different departments.
As many of the trial drugs and treatments are new, not all the nurses at The Christie know how to administer them, how they work, or what the side effects are. That’s why I am also a nurse educator. I use my specialist knowledge of the trial drug to help other nurses in the Trust learn about them.
Being a clinical research nurse in melanoma has increased my knowledge not just of melanoma as a disease and how we treat it but also how new treatments are introduced into the NHS.
The mantra of a clinical research nurse is ‘If it isn’t written down then it didn’t happen!’ which means paperwork – lots and lots of paperwork.
I’m sure most readers have seen the annoying piece of paper that often gets in the way in a packet of paracetamol. Until I became a clinical research nurse I never realised where that came from. All the toxicities the patient experiences are documented, along with every drug they are taking both before during and after taking part in the clinical trial. This information is entered into databases by every hospital taking part in the clinical trial across the globe and once a drug becomes licensed that information becomes the annoying piece of paper in the drug packet.
Reviewing the patient with the medical staff at every visit to the hospital means I can ask how they are feeling and what symptoms they have had, any new drugs they have taken and ensure that they know how to manage side effects in order that they maintain a good quality of life. This means we have collected the information required for the clinical trial and this can be entered into the database by the clinical research administrator with whom I work really closely.
Being in a consultation with a patient when they hear good news, like a scan showing that the treatment is working, is an honour. But along with the highs come the lows. It’s all part of my job to support patients and their families when the treatment is no longer working. This is difficult and never gets any easier, particularly if I’ve known the patient for months or even years!
Any patient taking part in a clinical trial is taking a leap into the unknown; it is a trial because we need to find out if the drug is more effective than existing treatments. Although many patients hope they will benefit personally from the trial, many are also doing it for altruistic reasons in the hope that other people after them will benefit from the research.
As a research nurse I feel extremely privileged to support the patients who take the brave step to participate in clinical trials and helping them through the decision making process to the end of the trial.
Any patients who are suitable for a clinical trial may be approached by their clinician or a research nurse to discuss a study. Patients can also ask their clinical team at any point if there are any trials they may be eligible for. Anyone with a general enquiry about clinical trials at The Christie can email firstname.lastname@example.org