Gender Neutral
Type Module
Testing Phase IV - completed
Principal investigator(s)
Colin Johnson
Cancer Sciences, University of Southampton
Southampton, United Kingdom
, Sally Wheelwright
University of Southampton
Southampton, United Kingdom
Study coordinator(s)
Isabel Madechangu
Southampton, United Kingdom

Project summary

Most patients with advanced cancer develop cachexia. Cachexia is a multidimensional syndrome characterised by involuntary weight loss, muscle atrophy and physiological changes that leads to progressive functional impairment. Treatments for cachexia are currently aimed at palliation so health related quality of life (HRQOL) is a vital measure of treatment efficacy. The relevant HRQOL issues are not adequately covered by the commonly used generic cancer instruments such as the EORTC QLQ-C30 so the EORTC QLQ-CAX24 was developed to supplement the QLQ-C30 in the assessment of HRQOL for cancer patients with cachexia.


Phase 1 – Literature review, health care professionals and patient interviews completed. Participating countries: UK, Norway, Switzerland, and Italy

Phase 2 – HRQOL issues converted into a set of items

Phase 3 – Pilot testing of questionnaire in UK, Norway, Switzerland, Italy, Sweden, Germany, France, Greece and Poland complete. The questionnaire has 24 items and is called the QLQ-CAX24.

Phase 4 – Validation study of QLQ-CAX24 in 14 countries across the world, with 557 participants. Analysis of results underway.

Future plans

The project is complete with a paper and report in preparation.


For patients

Most people with advanced cancer develop a condition called cachexia. Cachexia causes patients to lose weight uncontrollably. Patients with cachexia usually have a very poor appetite, but even those who are able to eat still lose weight because of the effects of their cancer. The weight being lost is muscle as well as fat. This means that patients with cachexia are weak and get tired very easily. We have developed a new questionnaire to assess how cachexia affects quality of life in cancer patients. We developed the questionnaire by interviewing patients and health care professionals and also looking at previous research. The new questionnaire has now been tested by 557 patients in 14 countries across the world. When we have finished analysing the results, the questionnaire will be ready to use in clinics and hospitals, to help doctors and nurses understand patient’s problems. It will also be used in research, to help evaluate whether new treatments are beneficial to patients with cachexia.