Cancer patients’ perceptions of cachexia – how to make a questionnaire

Even though cachexia affects the lives and trajectories of a large number of cancer patients, their own experiences of involuntary weight and muscle loss remains severely under-investigated.

Health-related quality of life (HRQOL) is considered one of the most important patient-reported outcomes (PRO), however few existing QOL questionnaires address patients’ own perceptions of cachexia.

– For a long time, cachexia was not a prioritized area of palliative care research. It was generally accepted that muscle and weight loss came with the territory of the disease, and that a reduced food intake could not always be helped. Now this is finally changing, Dr. Tora Solheim, physician and researcher at PRC in Trondheim, explains.

Several large studies have been conducted the last 5-10 years, investigating assessment and classification as well as treatment of cachexia. The patient perspective, though, has remained unknown territory.

Developing an assessment tool

A study led by Sally J. Wheelwright at the University of Southampton, UK, initiated the development of a questionnaire for cancer patients with cachexia, as a supplement to the EORTC (European Organisation for the Research and Treatment of Cancer) QLQ-C30 form.

The study was conducted as follows:

  • Identification of HRQOL issues based on a literature review and interviews
  • Wording of 44 questionnaire items
  • Pilot testing of the questionnaire in eight European countries

A phase four validation study is currently being conducted, using a revised version of the questionnaire with 24 final questions.

Pawing the way for better descriptions of cachexia

PRC has been involved throughout the project, including the pilot study. The cachexia researchers in Trondheim will also join phase four, including patients with all stages of
cachexia. Based on experiences from the pilot, they are careful optimists, but find it promising that food intake and weight loss are finally on the agenda.

– Many patients feel that it is valuable to be asked these questions and be allowed to talk about issues related to their weight, because it is a concern for them. It has become a central part of patient information, researcher and clinical nutritionist Trude Balstad says.

In Trondheim the questionnaire is already implemented into another research project, the Menac trial.

– The largest challenge is related to the number of questions. Many of our patients are very ill, and have problems completing the questionnaire. However, this is a way forward to a better description of cachexia, and our patients understand that we want to learn whether they need help and if the treatment they receive is actually working, Tora Solheim says, and points to a general issue related to HRQOL questionnaires.

– There are so many available, but the differences between them are so big it sometimes feels as we are comparing apples and pears.


The validation study, an international field study for the reliability and validity of the EORTC cancer cachexia module (the EORTC QLQ-CAX24) and the EORTC QLQ-C30 for assessing quality of life in cancer patients with cachexia, is currently recruiting centers.

More information about the project can be found at