A study to find what people who have had cancer think about a larger study that is being planned (ePOCS study, Stage 1)

The study team found that people with cancer had a very strong and consistent view about when to ask them to take part. This was after their initial fears and anxieties about their treatment and survival had started to go away and they felt more optimistic and certain about their future.

The study team asked people with prostate cancer, breast cancer and bowel cancer to take part in the study. 15 people in total took part. They also emailed 45 health professionals asking them to take part and 15 agreed to.

The study team aimed to have separate group interviews, one for the people with cancer and one for the doctors and nurses. However due to difficulties scheduling these, they also did some individual interviews. In total they interviewed 30 people. Of the 15 people with cancer who agreed to take part, the team did 3 group interviews and 2 individual interviews. Of the 15 doctors and nurses, they did 2 group interviews and 8 individual interviews.

The major theme of the interview was when should people with cancer be asked to take part in the ePOCS study.

When they looked at the answers they found that all the people with cancer said the worst time would be just after diagnosis. All the doctors and nurses they interviewed agreed with this.

Doctors also said that it might depend upon what type of cancer the person had and what treatment they were having. For example, it may be best to ask men with prostate cancer after they had decided what treatment to have. And for people who were having surgery to remove their cancer, it might be best at their 6 week follow up appointment after surgery.

All the people with cancer also said that everyone was an individual. And so everyone’s experience of cancer, treatment and how they coped was different. They were keen to highlight that what was the best time for them may not be the best time for others.

The study team also asked questions that could help them with the design and set up of the ePOCS study.

The study team concluded that the best time to ask people with cancer to take part in the ePOCS study would vary according to what cancer they had and what treatment they were having. So to get the most number of people to take part they would probably have to ask people at different times after their diagnosis.

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 (peer reviewed ) and published in a medical journal. The figures we quote above were provided by the trial team. We have not analysed the data ourselves.