Development of the EORTC QLQ-CAX24, A Questionnaire for Cancer Patients With Cachexia

Context. Cachexia is commonly found in cancer patients and has profound consequences; yet there is only onequestionnaire 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 wereincluded. In Phase 1, health-related quality of life (HRQOL) issues were generated from a literature review and interviews withpatients 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 patientsfrom 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 22new issues arising from the patient interviews. After patient and HCP input, 44 issues were formulated into questionnaireitems in Phase 2. One hundred ten patients took part in Phase 3. One item was reworded, and 20 items were deleted as aconsequence of patient feedback.Conclusions. The QLQ-CAX24 is a cancer cachexia-specific questionnaire, comprising 24 items, for HRQOL assessment inclinical trials and practice. It contains five multi-item scales (food aversion, eating and weight-loss worry, eating difficulties, lossof control, and physical decline) and four single items.