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A study to find out more about quality of life for people with gastro intestinal neuroendocrine or carcinoid cancers

This study developed a questionnaire looking at quality of life for people having treatment for carcinoid or neuroendocrine tumours (NET). These are cancers that affect the hormone producing systems of the body.

In many people, carcinoid can be controlled or cured. If it can be controlled, carcinoid is a long term chronic condition. But for some, it is more serious and can be life threatening. If you are in this situation, your doctors want to be sure that your treatment will be doing more good than harm. For example, some therapies may help you to live longer, but cause unpleasant side effects. Doctors will not want to put you through long courses of treatment and side effects for very little, or sometimes no gain.

It can be hard to make up your mind about a course of therapy by looking at information on how well it works. You may also want to know how you will feel in the later stages of your disease and how your treatment will affect your quality of life. There were no studies for carcinoid or NET that could have given you a clear idea about this.

In this study researchers wanted to develop a score that could give you an idea of what your quality of life might be with certain treatments. To do this they questioned a large sample of people with carcinoid or NET about their treatment and disease.

The aim of this study was to develop a new questionnaire for people with carcinoid or neuroendocrine tumours.


Start 01/10/2006
End 02/02/2010


Phase 4

Summary of results

The study team developed a new quality of life questionnaire. They found that it was suitable and useful when assessing the quality of life of people with neuroendocrine tumours of the gut, pancreas and liver.

This was an international study. It recruited 253 people with neuroendocrine tumours of the gut, pancreas and liver. Everyone was to complete a questionnaire when they agreed to take part in the study then 3 months and 6 months later.

The study team had a total of 660 questionnaires to analyse

  • 253 people completed the questionnaire when they agreed to take part
  • 227 people completed the questionnaire at 3 months
  • 180 people completed the questionnaire at 6 months

209 people also completed another questionnaire. It was to find out how easy the neuroendocrine quality of life questionnaire was to complete and how appropriate the questions were. Nearly all of those who took part had no difficulty completing the questionnaire.  

The study team concluded that the quality of life questionnaire was reliable and suitable for people with neuroendocrine tumours of the gut, pancreas and liver. They recommend its use in future when finding out about the quality of life of people with these types of neuroendocrine tumours.  

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.

Chief Investigator

Dr John Ramage

Supported by

European Organisation for Research and Treatment of Cancer (EORTC)
Experimental Cancer Medicine Centre (ECMC)
Hampshire Hospitals NHS Foundation Trust
National Institute for Health Research Cancer Research Network (NCRN)
Pelican Cancer Foundation
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Updated: 5 August 2013