"I am glad that taking part in a trial might help others on their own cancer journey.”
A study looking at a new way of improving clinic appointments for people with breast cancer and prostate cancer in Scotland
This study tested a new approach to helping people get the most out of their meeting with their cancer specialist. We know from research that people with cancer generally want to be informed about their illness, and involved in decisions about their care. People who feel involved are more likely to stick with their treatment plan, and show less distress.
There is a successful system in the USA which helps people with cancer discuss their concerns with their specialist. A trained helper called a ‘decision navigator’ helps people prepare for their appointment. Together you work out what you want to know, and what you would like the doctor to know about you. Researchers wanted to see if this approach would help people with breast cancer and prostate cancer in Scotland.
The aims of this study were to see if
- This approach encouraged people to ask the doctor questions that were important to them
- The patients using this system were more satisfied with their appointment than those seeing the doctor in the usual way
- This model worked well in Scotland
Summary of results
The study team only published results on those people who had prostate cancer.
The study team found that those who had a decision navigator
- Were more confident in making decisions about their treatment
- Were more certain they had made the right choice of treatment
- Had less regret about their decision 6 months later
This was a pilot study. It recruited 123 people. It was a randomised study. The people were put into 1 of 2 treatment groups. Neither they nor their doctor could decide which group they were in.
Half the people had a decision navigator. The other half didn’t.
People in group 1, spoke with the decision navigator before their appointment with their cancer specialist. The navigator helped them to decide what they wanted to know and what they would like their specialist to know. This information was then passed onto their specialist before the patient’s appointment.
During the appointment, the decision navigator took notes about the questions the patients wanted to ask and other important information. A copy of the summary, along with a digital audio recording of the appointment was given to each patient. A copy of the summary was kept in the medical notes, if the patient agreed.
Both groups completed questionnaires that asked how they were coping and feeling at different stages of the study.
The study team looked at
- The people’s belief in their decision making abilities
- How certain they were of their treatment decision both after the appointment and again after a 6 month period
- If they regretted their decision after the 6 month period
- The impact it had on their mood and adjustment to their diagnosis
They found that in both groups people’s confidence in making decisions increased but the increase was greater for those who had a decision navigator.
The study team concluded that having a decision navigator helped people to be more confident about making treatment decisions and feeling that they had made the right decision. Having a decision navigator also led people to feel less regret about their treatment decisions. The team said that using decision navigation was feasible and acceptable. It worked well in helping men with prostate cancer in Scotland prepare for their appointment with their cancer specialist.
We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Dr Belinda Hacking
Experimental Cancer Medicine Centre (ECMC)
Lothian Health Board
Macmillan Cancer Support
National Institute for Health Research Cancer Research Network (NCRN)