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

Sally J Wheelwright (Corresponding Author), Jane B. Hopkinson, Anne-Sophie Darlington, Deborah F. Fitzsimmons, Peter Fayers, Trude R Balstad, Anne Bredart, Eva Hammerlid, Stein Kaasa, Ourania Nicolatou-Galitis, Monica Pinto, Heike Schmidt, Tara S. Solheim, Florian Strasser, Iwona M. Tomaszewska, Colin D. Johnson

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

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.
Original languageEnglish
Pages (from-to)232-242
Number of pages11
JournalJournal of Pain and Symptom Management
Volume53
Issue number2
Early online date1 Nov 2016
DOIs
Publication statusPublished - Feb 2017

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Cachexia
Neoplasms
Quality of Life
Patient Care
Eating
Interviews
Delivery of Health Care
Surveys and Questionnaires
Weight Loss
Language
Guidelines
Food

Keywords

  • Cachexia
  • quality of life
  • palliative care
  • patient outcome assessment

Cite this

Wheelwright, S. J., Hopkinson, J. B., Darlington, A-S., Fitzsimmons, D. F., Fayers, P., Balstad, T. R., ... Johnson, C. D. (2017). Development of the EORTC QLQ-CAX24, A Questionnaire for Cancer Patients With Cachexia. Journal of Pain and Symptom Management, 53(2), 232-242. https://doi.org/10.1016/j.jpainsymman.2016.09.010

Development of the EORTC QLQ-CAX24, A Questionnaire for Cancer Patients With Cachexia. / Wheelwright, Sally J (Corresponding Author); Hopkinson, Jane B.; Darlington, Anne-Sophie; Fitzsimmons, Deborah F.; Fayers, Peter; Balstad, Trude R; Bredart, Anne; Hammerlid, Eva; Kaasa, Stein; Nicolatou-Galitis, Ourania; Pinto, Monica; Schmidt, Heike; Solheim, Tara S.; Strasser, Florian; Tomaszewska, Iwona M.; Johnson, Colin D. .

In: Journal of Pain and Symptom Management, Vol. 53, No. 2, 02.2017, p. 232-242.

Research output: Contribution to journalArticle

Wheelwright, SJ, Hopkinson, JB, Darlington, A-S, Fitzsimmons, DF, Fayers, P, Balstad, TR, Bredart, A, Hammerlid, E, Kaasa, S, Nicolatou-Galitis, O, Pinto, M, Schmidt, H, Solheim, TS, Strasser, F, Tomaszewska, IM & Johnson, CD 2017, 'Development of the EORTC QLQ-CAX24, A Questionnaire for Cancer Patients With Cachexia', Journal of Pain and Symptom Management, vol. 53, no. 2, pp. 232-242. https://doi.org/10.1016/j.jpainsymman.2016.09.010
Wheelwright, Sally J ; Hopkinson, Jane B. ; Darlington, Anne-Sophie ; Fitzsimmons, Deborah F. ; Fayers, Peter ; Balstad, Trude R ; Bredart, Anne ; Hammerlid, Eva ; Kaasa, Stein ; Nicolatou-Galitis, Ourania ; Pinto, Monica ; Schmidt, Heike ; Solheim, Tara S. ; Strasser, Florian ; Tomaszewska, Iwona M. ; Johnson, Colin D. . / Development of the EORTC QLQ-CAX24, A Questionnaire for Cancer Patients With Cachexia. In: Journal of Pain and Symptom Management. 2017 ; Vol. 53, No. 2. pp. 232-242.
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abstract = "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.",
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T1 - Development of the EORTC QLQ-CAX24, A Questionnaire for Cancer Patients With Cachexia

AU - Wheelwright, Sally J

AU - Hopkinson, Jane B.

AU - Darlington, Anne-Sophie

AU - Fitzsimmons, Deborah F.

AU - Fayers, Peter

AU - Balstad, Trude R

AU - Bredart, Anne

AU - Hammerlid, Eva

AU - Kaasa, Stein

AU - Nicolatou-Galitis, Ourania

AU - Pinto, Monica

AU - Schmidt, Heike

AU - Solheim, Tara S.

AU - Strasser, Florian

AU - Tomaszewska, Iwona M.

AU - Johnson, Colin D.

N1 - Funding: This work was supported by the by the European Organization for Research and Treatment of Cancer Quality of Life Group (grant number 002/2010) who approved the article before submission.

PY - 2017/2

Y1 - 2017/2

N2 - 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.

AB - 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.

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KW - quality of life

KW - palliative care

KW - patient outcome assessment

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JO - Journal of Pain and Symptom Management

JF - Journal of Pain and Symptom Management

SN - 0885-3924

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ER -