Development of the EORTC QLQ-CAX24, a questionnaire for cancer patients with cachexia

Abstract Context Cachexia is commonly found in cancer patients and has profound consequences yet there is only one questionnaire that examines the patient’s perspective. Objective To report a rigorously developed module for patient self-reported impact of cancer cachexia. Methods Module development followed published guidelines. Patients from across the cancer cachexia trajectory were included. In Phase 1, HRQOL issues were generated from a literature review and interviews with patients in four countries. The issues were revised based on patient and health care professional (HCP) input. In Phase 2, questionnaire items were formulated and translated into the languages required for Phase 3, the pilot phase, in which patients from eight countries scored the relevance and importance of each item, and provided qualitative feedback. Results A total of 39 patients and 12 HCPs took part in Phase 1. The literature review produced 68 HRQOL issues, with 22 new issues arising from the patient interviews. Following patient and HCP input, 44 issues were formulated into questionnaire items in Phase 2. 110 patients took part in Phase 3. One item was reworded and 20 items were deleted as a consequence of patient feedback. Conclusions The QLQ-CAX24 is a cancer cachexia-specific questionnaire, comprising 24 items, for HRQOL assessment in clinical trials and in practice. It contains five multi-item scales (food aversion, eating and weight-loss worry, eating difficulties, loss of control and physical decline) and four single items.