“I think it’s really important that people keep signing up to these type of trials to push research forward.”
A study looking at quality of life issues for people with cancer who are losing weight
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This study looked at the
More about this trial
Some people with cancer have severe weight loss. Doctors call this cachexia (pronounced kak-ex-ee-a). Severe weight loss can affect many aspects of peoples’ lives.
Quality of life questionnaires ask some questions about weight loss. But in this study, researchers developed and tested a questionnaire looking specifically at issues related to weight loss. They used it alongside other questionnaires.
The researchers wanted the questionnaire to include the most important quality of life issues for people living with cachexia.
Summary of results
The researchers successfully developed a questionnaire looking at issues related to weight loss for people with cancer.
This study was carried out in the UK and in 8 other European countries. People were able to take part at any stage of their cancer diagnosis. This meant the researchers had results from people recently diagnosed with cancer and people living with cancer towards the end of their life.
The team split their study into 3 parts.
39 people with cachexia and 12 healthcare professionals joined part 1. The researchers looked at results from other studies to see what quality of life issues had been found before. They then asked people with cachexia about their experiences of weight loss. These issues or experiences were added to what the researchers had found from published studies.
The team showed the combined list of issues to:
- people with cachexia
- healthcare professionals who are experienced in caring for people with cachexia
They asked everyone:
- how important each issue was
- if any issue shouldn’t be included in the questionnaire
- if any issues were missing
Using the information they learnt in Part 1 of the study the researchers developed a new study questionnaire. They included 44 issues.
110 people took part in part 3 of the study.
Everyone taking part completed a standard quality of life questionnaire and the study questionnaire. The researchers asked everyone:
- how important each issue is
- if each issue is relevant to them
- if they found any of the questions difficult, confusing or upsetting
The study team asked everyone taking part a few questions about themselves, such as their employment history and education. The researchers also looked at information about each person’s cancer from their medical records.
The results from part 3 have helped researchers identify 5 themes, which affect quality of life for people with cachexia.
- food aversion – this is feeling very put off by certain or all foods. This might be because of taste changes or feeling too full to eat
- worrying about eating and weight loss
- eating difficulties – this might be because of difficulty swallowing
- loss of control
- becoming more physically unwell
They also found other issues that didn’t fit into those themes. These were:
- having a dry mouth
- eating when you don’t feel like it
- not having enough information
The researchers have now developed a questionnaire, QLQ-CAX24, to find out more about weight loss related quality of life experiences of people with cancer.
The study team are now testing this questionnaire with a large number of people worldwide. This will help the team find out if QLQ-CAX24:
- is reliable at finding out about quality of life experiences
- gives accurate results
- is culturally suitable for people outside Europe
The researchers hope that QLQ-CAX24 will be used by doctors treating people with cancer in the future.
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Professor C.D. Johnson
European Organisation for Research and Treatment of Cancer (EORTC)
NIHR Clinical Research Network: Cancer
University Hospital Southampton NHS Foundation Trust