Development of the EORTC QLQ-CAX24, A Questionnaire for Cancer Patients With Cachexia.
Cachexia is commonly found in cancer patients and has profound consequences; yet there is only one questionnaire that examines the patient's perspective.



To report a rigorously developed module for patient self-reported impact of cancer cachexia.



Module development followed published guidelines. Patients from across the cancer cachexia trajectory were included. In Phase 1, health-related quality of life (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.



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. After patient and HCP input, 44 issues were formulated into questionnaire items in Phase 2. One hundred ten patients took part in Phase 3. One item was reworded, and 20 items were deleted as a consequence of patient feedback.



The QLQ-CAX24 is a cancer cachexia-specific questionnaire, comprising 24 items, for HRQOL assessment in clinical trials and 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.
Cancer Sciences, University of Southampton, Southampton, UK. Electronic address: S.J.Wheelwright@soton.ac.uk.
Sally J
SJ
Wheelwright
Cardiff School of Healthcare Sciences, Cardiff University, Cardiff, UK.
Jane B
JB
Hopkinson
Health Sciences, University of Southampton, Southampton, UK.
Anne-Sophie
AS
Darlington
Swansea Centre for Health Economics, Swansea University, Swansea, UK.
Deborah F
DF
Fitzsimmons
Division of Applied Health Sciences, University of Aberdeen, Aberdeen, UK; European Palliative Care Research Centre (PRC), Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
Peter
P
Fayers
European Palliative Care Research Centre (PRC), Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Norwegian University of Science and Technology (NTNU), Trondheim, Norway; Cancer Clinic, St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway.
Trude R
TR
Balstad
Institut Curie, Paris, France; University Paris Descartes, Paris, France.
Anne
A
Bredart
Department of Otolaryngology Head & Neck Surgery, Sahlgrenska University Hospital, Goteborg, Sweden.
Eva
E
Hammerlid
European Palliative Care Research Centre (PRC), Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Norwegian University of Science and Technology (NTNU), Trondheim, Norway; Cancer Clinic, St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway.
Stein
S
Kaasa
University of Athens, Athens, Greece.
Ourania
O
Nicolatou-Galitis
Istituto Nazionale Tumori "Fondazione Giovanni Pascale" - IRCCS, Naples, Italy.
Monica
M
Pinto
Institute of Health and Nursing Sciences, Martin-Luther-University Halle-Wittenberg, Halle, Germany.
Heike
H
Schmidt
European Palliative Care Research Centre (PRC), Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Norwegian University of Science and Technology (NTNU), Trondheim, Norway; Cancer Clinic, St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway.
Tora S
TS
Solheim
Cantonal Hospital, St Gallen, St Gallen, Switzerland.
Florian
F
Strasser
Department of Medical Education, Jagiellonian University Medical College, Cracow, Poland.
Iwona M
IM
Tomaszewska
Cancer Sciences, University of Southampton, Southampton, UK.
Colin D
CD
Johnson
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002100:Cachexia / Q000175:diagnosis* / Q000209:etiology; D059026:Diagnostic Self Evaluation; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000150:complications*; D010865:Pilot Projects; D011788:Quality of Life; D011795:Surveys and Questionnaires
Cachexia; palliative care; patient outcome assessment; quality of life