Improving understanding of the impact bowel cancer and its treatment can have on people’s lives

Guest bloggers, Professor Claire Foster, Director of Macmillan Survivorship Research Group and Dr Sally Wheelwright, Senior Research Fellow, tell us about the ColoREctal Wellbeing (CREW) study – a Macmillan funded project looking at the impact of bowel cancer and its treatment on people’s lives and how this can drive development of support.

What did the research involve?

The CREW study included people newly diagnosed with bowel cancer from 29 hospitals across the UK during November 2010 to March 2012. Those invited to take part in CREW were waiting for their surgery to remove the cancer. We did not include people who had advanced cancer at diagnosis. Over 1,000 people agreed to take part. We have collected information from their medical records including details about their diagnosis, treatments and other factors. Most people also agreed to fill out CREW questionnaires.

As we were trying to find out as much as possible about the impact on various aspects of daily life and what might help or make things worse, the questionnaires were quite long. We asked lots of different questions about how people were doing in terms of their health, wellbeing and quality of life, how confident they were to manage their health, what their needs were, how supported they felt and what use they made of health services. Questionnaires were sent out eight times over a five year period, the first one before surgery and the last one five years after surgery.

What have we found out so far?

The CREW study has shown that around seven out of 10 people (70%) recover well after treatment for bowel cancer in terms of their health and wellbeing. However, around three out of 10 (30%) do not do as well and this is still the case five years after surgery.

The CREW study identified that, even before surgery, if we ask the right questions we can identify those people who are more likely to have less good health and wellbeing later. People who are feeling depressed or who lack confidence to manage symptoms and other illness related problems are less likely to report feeling well or have good quality of life up to 5 years later.

We found that there was little change in confidence to manage illness related problems and 4 in 10 (40%) people in CREW did not feel confident. It is important to offer help and support soon after bowel cancer diagnosis to those experiencing depression or low confidence to manage symptoms and other problems as we have evidence that with the right support these can improve. If you are feeling depressed or not sure how to manage symptoms or other problems or are struggling to manage, finding the right support may make a real difference.

We have also found that people who already have other conditions such as arthritis, anxiety or depression, as well as bowel cancer, may need additional support where these conditions are limiting their daily activities.

The availability of social support from others is another important factor for recovery after bowel cancer. Three out of 10 (30%) people felt that their social support had reduced during the first two years after surgery. People who felt they lacked support from others had worse quality of life, higher levels of anxiety and higher levels of depression.

If you are concerned about your health and wellbeing the right support may help you.

Support for you

• Find out more about the CREW study
• Speak to your doctor if you have concerns about your health and wellbeing
• Visit our forum – a place for anyone affected by bowel cancer to talk about their experiences, share knowledge and support each other
• Email a nurse at nurse@bowelcanceruk.org.uk
• Download and order our information resources