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The large population of first generation Turkish and Moroccan immigrants who moved to Western Europe in the 1960s and 1970s is now reaching an age at which the incidence of chronic diseases, including cancer, rises sharply. To date, little attention has been paid to the health-related quality of life (HRQOL) of these ethnic minority groups, primarily due to the paucity of well translated and validated measures, but also because of a range of methodological and logistical barriers. The primary objective of this paper is to describe the methodological challenges in conducting HRQOL research among these patient populations, based on experience gained in a project in which four widely used HRQOL questionnaires were translated into Turkish, Moroccan-Arabic and Tarifit, and administered to a sample of 90 Turkish and 79 Moroccan cancer patients in the Netherlands. Problems encountered in translating and administering the questionnaires included achieving semantic equivalence (use of loanwords), use of numerical rating scales, lengthy questions and response scales, and culturally sensitive and/or inappropriate questions. Privacy laws that prohibit hospitals from registering the ethnicity of patients hampered efficient identification of eligible patients. Recruiting patients to studies is often difficult due to low literacy levels, lack of familiarity with and distrust of research, concerns about immigration status, and inaccurate or missing contact information. This can lead to lower response rates than is the case with the population of Dutch cancer patients. Additional ethical issues that arise in such studies concern patients' problems with communicating with their health care providers, their lack of understanding of their diagnosis, treatment and prognosis, and the potential role conflict experienced by bilingual research assistants who may wish or be asked to intervene on the patients' behalf. Practical approaches to resolving these issues are presented.

In this study, the SF-36 Health Survey was translated into two oral Moroccan languages and the existing Turkish version was culturally adapted for use in The Netherlands, and was tested among 79 Moroccan and 90 Turkish cancer patients. There were normal levels of missing item responses but a higher administration time. With minor exceptions, the scale structure of the SF-36 was confirmed and the reliability of the scales met the 0.70 criterion for group comparisons. The questionnaire distinguished clearly between subgroups formed on the basis of performance status and was responsive to change in performance status over time. Some evidence of differential item function (DIF) was found in both ethnic groups. These results support the use of the SF-36 among Turkish and Moroccan cancer patients in The Netherlands. Additional studies are needed to confirm the psychometrics of the questionnaire when used among these ethnic minority groups in other Western European countries.

The purpose of this study was to validate the core EORTC quality of life questionnaire, the QLQ-C30 (version 3.0), for use among Turkish and Moroccan cancer patients in the Netherlands. The questionnaire was translated into two oral Moroccan languages , and the existing Turkish version was culturally adapted for use in the Netherlands. Ninety Turkish and 79 Moroccan patients completed the questionnaire. Administration of the questionnaire proved feasible, with low levels of missing questionnaires (4%) and missing items (on average, 1.5-2.4%). With one minor exception, the evidence of convergent validity was strong for all multi-item scales. Internal consistency reliability was above 0.70 for all scales except the cognitive functioning scale in the Turkish sample. The questionnaire was able to distinguish clearly between subgroups formed on the basis of performance status and comorbidity, and was moderately responsive to change over time in performance status. These data support the use of the QLQ-C30 among Turkish and Moroccan cancer patients residing in the Netherlands. Additional studies are needed to confirm the psychometrics of the questionnaire when used among these ethnic minority groups residing in other Western European countries.