Cross-cultural use of health-related quality of life assessments in clinical oncology

doi:10.1017/CBO9780511545856.020

20 - Cross-cultural use of health-related quality of life assessments in clinical oncology

Published online by Cambridge University Press: 18 December 2009

Neil K. Aaronson Ph.D.

Edited by

Joseph Lipscomb ,

Carolyn C. Gotay and

Claire Snyder

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Neil K. Aaronson Ph.D.: Affiliation:
Head, Division of Psychosocial Research & Epidemiology The Netherlands Cancer Institute, Amsterdam, the Netherlands
Joseph Lipscomb: Affiliation:
National Cancer Institute, Bethesda, Maryland
Carolyn C. Gotay: Affiliation:
Cancer Research Center, Hawaii
Claire Snyder: Affiliation:
National Cancer Institute, Bethesda, Maryland

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Summary

“Guests are advised to leave their values at the front desk.”

(Notice posted in an Italian hotel lobby)

“Language is your most versatile scientific tool. Learn to use it with precision.”

(Anonymous)

Introduction

Clinical research in oncology is increasingly characterized by multicenter efforts on an international scale. This has the advantage of improving the efficiency with which clinical trials can be conducted via rapid accrual of patients, and also facilitates the registration of new, effective therapies across national boundaries and health care systems. To carry out such international studies, it is essential that the outcomes of interest are standardized across participating countries. This presents few, if any, problems when focusing on biomedical outcomes such as tumor response or survival. However, when employing treatment outcomes of a more subjective nature, including patients' self-reported symptom experience, perceived health status, and quality of life, cross-cultural issues become of paramount importance. It is essential that the questions we ask and the responses we elicit from our patients maintain the same meaning when translated into different languages and applied in different cultural settings. Without such cross-cultural equivalence, the interpretation of patient-based data in multinational clinical investigations is at best problematic, and at worst impossible.

The past 15 years have witnessed major advances in the development of practical, reliable, and valid questionnaires for assessing the health-related quality of life (HRQOL) of patients with cancer.

Type: Chapter
Information: Outcomes Assessment in Cancer
Measures, Methods and Applications
, pp. 406 - 424

DOI: https://doi.org/10.1017/CBO9780511545856.020 [Opens in a new window]

Publisher: Cambridge University Press

Print publication year: 2004

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References

Schipper, H., Clinch, J., McMurray, A.et al. (1984). Measuring the quality of life of cancer patients: the Functional Living Index-Cancer: development and validationJournal of Clinical Oncology 2:472–83CrossRef Google Scholar PubMed

Ganz, P. A., Schag, C. A., Lee, J. J.et al. (1992). The CARES: a generic measure of health-related quality of life for patients with cancerQuality of Life Research 1:19–29CrossRef Google Scholar PubMed

Schag, C. A., Ganz, P. A., Heinrich, R. L. (1991). Cancer Rehabilitation Evaluation System—short form (CARES-SF). A cancer specific rehabilitation and quality of life instrumentCancer 68:1406–133.0.CO;2-2>CrossRef Google Scholar PubMed

Haes, J. C., Knippenberg, F. C., Neijt, J. P. (1990). Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom ChecklistBritish Journal of Cancer 62:1034–8CrossRef Google Scholar PubMed

Aaronson, N. K., Ahmedzai, S., Bergman, B.et al. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncologyJournal of the National Cancer Institute 85:365–76CrossRef Google Scholar

Cella, D. F., Tulsky, D. S., Gray, G.et al. (1993). The Functional Assessment of Cancer Therapy scale: development and validation of the general measureJournal of Clinical Oncology 11:570–9CrossRef Google Scholar PubMed

Erickson, this volume, Chapter 3

Clinch, J. (1996). The Functional Living Index-Cancer: ten years later. In Quality of Life and Pharmacoeconomics in Clinical Trials (2nd Edition), ed. B. Spilker, pp. 215–25. New York: Lippincott-Raven

Goh, C. R., Lee, K. S., Tan, T. C.et al. (1996). Measuring quality of life in different cultures: translation of the Functional Living Index for Cancer (FLIC) into Chinese and Malay in SingaporeAnnals of the Academy of Medicine of Singapore 25:323–34Google Scholar PubMed

Eguchi, K., Fukutani, M., Kanazawa, M.et al. (1992). Feasibility study on quality-of-life questionnaires for patients with advanced lung cancerJapanese Journal of Clinical Oncology 22:185–93Google Scholar PubMed

Forjaz, M. J., Guarnaccia, C. A. (2001). A comparison of Portuguese and American patients with hematological malignancies: a cross-cultural survey of health-related quality of lifePsycho-Oncology 10:251–8CrossRef Google Scholar PubMed

King, M. T., Dobson, A. J., Harnett, P. R. (1996). A comparison of two quality-of-life questionnaires for cancer clinical trials: the functional living index—cancer (FLIC) and the quality of life questionnaire core module (QLQ-C30)Journal of Clinical Epidemiology 49:21–9CrossRef Google Scholar

Mercier, M., Bonneterre, J., Schraub, S.et al. (1998). The development of a French version of a questionnaire on the quality of life in cancerology (Functional Living Index-Cancer: FLIC)Bulletin du Cancer 85:180–6Google Scholar

Canales, S., Ganz, P. A., Coscarelli, C. A. (1995). Translation and validation of a quality of life instrument for Hispanic American cancer patients: methodological considerationsQuality of Life Research 4:3–11CrossRef Google Scholar PubMed

te Velde, A., Sprangers, M. A., Aaronson, N. K. (1996). Feasibility, psychometric performance, and stability across modes of administration of the CARES-SFAnnals of Oncology 7:381–90CrossRef Google Scholar PubMed

Rustoen, T., Moum, T., Wiklund, I.et al. (1999). Quality of life in newly diagnosed cancer patientsJournal of Advanced Nursing 29:490–8CrossRef Google Scholar PubMed

Haes, J. C., Olschewski, M. (1998). Quality of life assessment in a cross-cultural context: use of the Rotterdam Symptom Checklist in a multinational randomised trial comparing CMF and Zoladex (Goserlin) treatment in early breast cancerAnnals of Oncology 9:745–50CrossRef Google Scholar

Kramer, J. A., Curran, D., Piccart, M.et al. (2000). Randomised trial of paclitaxel versus doxorubicin as first-line chemotherapy for advanced breast cancer: quality of life evaluation using the EORTC QLQ-C30 and the Rotterdam symptom checklistEuropean Journal of Cancer 36:1488–97CrossRef Google Scholar PubMed

Agra, Y., Badia, X. (1998). Spanish version of the Rotterdam Symptom Check List: cross-cultural adaptation and preliminary validity in a sample of terminal cancer patientsPsycho-Oncology 7:229–393.0.CO;2-R>CrossRef Google Scholar

Ravaioli, A., Buda, P., Fava, C.et al. (1996). Assessment of the RSCL quality of life instrument during chemotherapy in an Italian settingQuality of Life Research 5:491–5CrossRef Google Scholar

Paci, E. (1992). Assessment of validity and clinical application of an Italian version of the Rotterdam Symptom ChecklistQuality of Life Research 1:129–34CrossRef Google Scholar PubMed

Fallowfield, L. J. (1995). Assessment of quality of life in breast cancerActa Oncologica 34:689–94CrossRef Google Scholar PubMed

Ganz, P. A., Desmond, K. A., Leedham, B.et al. (2002). Quality of life in long-term, disease-free survivors of breast cancer; a follow-up studyJournal of the National Cancer Institute 94:39–49CrossRef Google Scholar PubMed

Ganz, P. A., Schag, A. C., Lee, J. J.et al. (1992). Breast conservation versus mastectomy. Is there a difference in psychological adjustment or quality of life in the year after surgery?Cancer 69:1729–383.0.CO;2-D>CrossRef Google Scholar PubMed

Kiebert, G. M., Haes, J. C., Velde, C. J. (1991). The impact of breast-conserving treatment and mastectomy on the quality of life of early-stage breast cancer patients: a reviewJournal of Clinical Oncology 9:1059–70CrossRef Google Scholar PubMed

Cull, A., Sprangers, M., Bjordal, K. et al. (2002). EORTC Quality of Life Group Translation Procedures. Brussels: European Organization for Research and Treatment of Cancer

Zhao, H., Kanda, K. (2000). Translation and validation of the standard Chinese version of the EORTC QLQ-C30.Quality of Life Research 9:129–37CrossRef Google Scholar PubMed

Kobayashi, K., Takeda, F., Teramukai, S.et al. (1998). A cross-validation of the European Organization for Research and Treatment of Cancer QLQ-C30 (EORTC QLQ-C30) for Japanese with lung cancerEuropean Journal of Cancer 34:810–5CrossRef Google Scholar PubMed

Petersen, M. A., Groenvold, M., Bjorner, J.et al. (2003). Use of differential item functioning analysis to assess the equivalence of translations of a questionnaireQuality of Life Research 12(4):373–85CrossRef Google Scholar PubMed

Reise, this volume, Chapter 21

Hambleton, this volume, Chapter 22

Apolone, G., Filiberti, A., Cifani, S.et al. (1998). Evaluation of the EORTC QLQ-C30 questionnaire: a comparison with SF-36 Health Survey in a cohort of Italian long-survival cancer patientsAnnals of Oncology 9:549–57CrossRef Google Scholar

Arraras, J. I., Arias, F., Tejedor, M.et al. (2002). The EORTC QLQ-C30 (version 3.0) quality of life questionnaire: validation study for Spain with head and neck cancer patientsPsycho-Oncology 11:249–56CrossRef Google Scholar PubMed

Kaasa, S., Bjordal, K., Aaronson, N.et al. (1995). The EORTC core quality of life questionnaire (QLQ-C30): validity and reliability when analysed with patients treated with palliative radiotherapyEuropean Journal of Cancer 31A:2260–3CrossRef Google Scholar PubMed

Osoba, D., Zee, B., Pater, J.et al. (1994). Psychometric properties and responsiveness of the EORTC Quality of Life Questionnaire (QLQ-C30) in patients with breast, ovarian and lung cancerQuality of Life Research 3:353–64CrossRef Google Scholar PubMed

Ringdal, G. I., Ringdal, K. (1993). Testing the EORTC Quality of Life Questionnaire on cancer patients with heterogeneous diagnosesQuality of Life Research 2:129–40CrossRef Google Scholar PubMed

Ringdal, K., Ringdal, G. I., Kaasa, S.et al. (1999). Assessing the consistency of psychometric properties of the HRQoL scales within the EORTC QLQ-C30 across populations by means of the Mokken Scaling ModelQuality of Life Research 8:25–43CrossRef Google Scholar PubMed

McLachlan, S. A., Devins, G. M., Goodwin, P. J. (1999). Factor analysis of the psychosocial items of the EORTC QLQ-C30 in metastatic breast cancer patients participating in a psychosocial intervention studyQuality of Life Research 8:311–17CrossRef Google Scholar

Ford, E. M., Havstad, S. L., Kart, C. S. (2002). Assessing the reliability of the EORTC QLQ-C30 in a sample of older African American and Caucasian adultsQuality of Life Research 10:533–41CrossRef Google Scholar

Hjermstad, M. J., Fayers, P. M., Bjordal, K.et al. (1998). Health-related quality of life in the general Norwegian population assessed by the European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire: the QLQ = C30 (+3)Journal of Clinical Oncology 16:1188–96CrossRef Google Scholar

Schwarz, R., Hinz, A. (2001). Reference data for the quality of life questionnaire EORTC QLQ-C30 in the general German populationEuropean Journal of Cancer 37:1345–51CrossRef Google Scholar PubMed

Gotay, C. C., Holup, J. L., Pagano, I. (2002). Ethnic differences in quality of life among early breast and prostate cancer survivorsPsycho-Oncology 11:103–13CrossRef Google Scholar PubMed

Osoba, D., Aaronson, N., Zee, B.et al. (1997). Modification of the EORTC QLQ-C30 (version 2.0) based on content validity and reliability testing in large samples of patients with cancer. The Study Group on Quality of Life of the EORTC and the Symptom Control and Quality of Life Committees of the NCI of Canada Clinical Trials Group.Quality of Life Research 6:103–8CrossRef Google Scholar

Montazeri, A., Harirchi, I., Vahdani, M.et al. (1999). The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30): translation and validation study of the Iranian versionSupportive Care in Cancer 7:400–6CrossRef Google Scholar PubMed

Hjermstad, M. J., Fossa, S. D., Bjordal, K.et al. (1995). Test/retest study of the European Organization for Research and Treatment of Cancer Core Quality-of-Life QuestionnaireJournal of Clinical Oncology 13:1249–54CrossRef Google Scholar PubMed

Kemmler, G., Holzner, B., Kopp, M.et al. (1999). Comparison of two quality-of-life instruments for cancer patients: the functional assessment of cancer therapy-general and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30Journal of Clinical Oncology 17:2932–40CrossRef Google Scholar PubMed

Kopp, M., Schweigkofler, H., Holzner, B.et al. (2000). EORTC QLQ-C30 and FACT-BMT for the measurement of quality of life in bone marrow transplant recipients: a comparisonEuropean Journal of Haematology 65:97–103CrossRef Google Scholar PubMed

Groenvold, M., Klee, M. C., Sprangers, M. A.et al. (1997). Validation of the EORTC QLQ-C30 quality of life questionnaire through combined qualitative and quantitative assessment of patient-observer agreementJournal of Clinical Epidemiology 50:441–50CrossRef Google Scholar PubMed

Klee, M., Groenvold, M., Machin, D. (1997). Quality of life of Danish women: population-based norms of the EORTC QLQ-C30Quality of Life Research 6:27–34CrossRef Google Scholar PubMed

Michelson, H., Bolund, C., Nilsson, B.et al. (2000). Health-related quality of life measured by the EORTC QLQ-C30—reference values from a large sample of Swedish populationActa Oncologica 39:477–84Google Scholar PubMed

Fayers, P., Weeden, S., Curran, D. (1998). EORTC QLQ-C30 Reference Values. Brussels: European Organization for Research and Treatment of Cancer

Bonomi, A. E., Cella, D. F., Hahn, E. A.et al. (1996). Multilingual translation of the Functional Assessment of Cancer Therapy (FACT) quality of life measurement systemQuality of Life Research 5:309–20CrossRef Google Scholar PubMed

Lent, L., Hahn, E., Eremenco, S.et al. (1999). Using cross-cultural input to adapt the Functional Assessment of Chronic Illness Therapy (FACIT) scalesActa Oncologica 38:695–702Google Scholar PubMed

Cella, D., Hernandez, L., Bonomi, A. E.et al. (1998). Spanish language translation and initial validation of the functional assessment of cancer therapy quality-of-life instrumentMedical Care 36:1407–18CrossRef Google Scholar PubMed

Cella, D. F., McCain, N. L., Peterman, A. H.et al. (1996). Development and validation of the Functional Assessment of Human Immunodeficiency Virus Infection (FAHI) quality of life instrumentQuality of Life Research 5:450–63CrossRef Google Scholar PubMed

Ward, W. L., Hahn, E. A., Mo, F.et al. (1999). Reliability and validity of the Functional Assessment of Cancer Therapy-Colorectal (FACT-C) quality of life instrumentQuality of Life Research 8:181–95CrossRef Google Scholar PubMed

Wan, G. J., Counte, M. A., Cella, D. F.et al. (1999). The impact of socio-cultural and clinical factors on health-related quality of life reports among Hispanic and African-American cancer patientsJournal of Outcome Measurement 3:200–15Google Scholar PubMed

Dapueto, J. J., Francolino, C., Gotta, I.et al. (2001). Evaluation of the Functional Assessment of Cancer Therapy-General Questionnaire (FACT-G) in a South American Spanish speaking populationPsycho-Oncology 10:88–923.0.CO;2-S>CrossRef Google Scholar

Yu, C. L., Fielding, R., Chan, C. L.et al. (2000). Measuring quality of life of Chinese cancer patients: a validation of the Chinese version of the Functional Assessment of Cancer Therapy-General (FACT-G) scaleCancer 88:1715–273.0.CO;2-K>CrossRef Google Scholar PubMed

Mullin, V., Cella, D., Chang, C. H.et al. (2000). Development of three African language translations of the FACT-GQuality of Life Research 9:139–49CrossRef Google Scholar PubMed

Pandey, M., Thomas, B. C., Ramdas, K.et al. (2002). Quality of life in breast cancer patients: validation of a FACT-B Malayalam versionQuality of Life Research 11:87–90CrossRef Google Scholar PubMed

Fallowfield, L. J., Leaity, S. K., Howell, A.et al. (1999). Assessment of quality of life in women undergoing hormonal therapy for breast cancer: validation of an endocrine symptom subscale for the FACT-BBreast Cancer Research and Treatment 55:189–99CrossRef Google Scholar PubMed

Flaherty, J. A., Gaviria, F. M., Pathak, D.et al. (1988). Developing instruments for cross-cultural psychiatric researchJournal of Nervous and Mental Disease 176:257–63CrossRef Google Scholar PubMed

Guillemin, F., Bombardier, C., Beaton, D. (1993). Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelinesJournal of Clinical Epidemiology 46:1417–32CrossRef Google Scholar PubMed

Hays, R. D., Anderson, R., Revicki, D. (1993). Psychometric considerations in evaluating health-related quality of life measuresQuality of Life Research 2:441–9CrossRef Google Scholar PubMed

Herdman, M., Fox-Rushby, J., Badia, X. (1998). A model of equivalence in the cultural adaptation of HRQoL instruments: the universalist approachQuality of Life Research 7:323–35CrossRef Google Scholar PubMed

Hui, C., Triandis, H. C. (1985). Measurement in cross-cultural psychology: a review and comparison of strategiesCross Cultural Psychology 16:131–52CrossRef Google Scholar

Stewart, A. L., Napoles-Springer, A. (2000). Health-related quality-of-life assessments in diverse population groups in the United StatesMedical Care 38:II102–24CrossRef Google Scholar PubMed

Cella, D., Chang, C. H., Lai, J. S.et al. (2002). Advances in quality of life measurements in oncology patientsSeminars in Oncology 29:60–8CrossRef Google Scholar PubMed

Bjordal, K., Kaasa, S., Mastekaasa, A. (1994). Quality of life in patients treated for head and neck cancer: a follow-up study 7 to 11 years after radiotherapyInternational Journal of Radiation Oncology, Biology, and Physics 28:847–56CrossRef Google Scholar PubMed

Bjordal, K., Graeff, A., Fayers, P. M.et al. (2000). A 12 country field study of the EORTC QLQ-C30 (version 3.0) and the head and neck cancer specific module (EORTC QLQ-H&N35) in head and neck patients. EORTC Quality of Life Group.European Journal of Cancer 36:1796–807CrossRef Google Scholar PubMed

McLachlan, S. A., Devins, G. M., Goodwin, P. J. (1998). Validation of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (QLQ-C30) as a measure of psychosocial function in breast cancer patientsEuropean Journal of Cancer 34:510–17CrossRef Google Scholar PubMed

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20 - Cross-cultural use of health-related quality of life assessments in clinical oncology

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