"I am glad that taking part in a trial might help others on their own cancer journey.”
A study to find what people who have had cancer think about a larger study that is being planned (ePOCS study, Stage 1)
This study asked people to help with the design of a bigger study called ePOCS, which stands for ‘electronic patient-reported outcomes from cancer survivors’.
The ePOCS study will involve people filling in questionnaires via the internet and their answeres will be linked to their hospital medical information.
The aim of the study will be
- To learn more about how cancer and its treatment affects peoples’ lives in the long run
The researchers were planning a big study and they wanted to get the opinions of people who have had cancer. The aim of this initial study (stage 1) was to find out what people thought about
- Whether the ePOCS study was a good idea
- When would be a good time to tell people about the study
- What the best ways of contacting people would be
- Whether the information the study team will give people explains the study clearly and was easy to read
As well as talking to people who have had cancer treatment, the study team asked for opinions from health care professionals who provided cancer care.
Summary of results
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 (
How to join a clinical trial
Dr Penny Wright
Cancer Research UK
Macmillan Cancer Support
National Institute for Health Research Cancer Research Network (NCRN)
The Leeds Teaching Hospitals NHS Trust
University of Leeds