title: Methodological challenges in quality of life research among Turkish and Moroccan ethnic minority cancer patients: translation, recruitment and ethical issues.
abstract: 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.
authors.affiliation: VU University Medical Center, EMGO Institute, Amsterdam, The Netherlands.
authors.forename: Rianne
authors.initials: R
authors.lastname: Hoopman
authors.forename: Caroline B
authors.initials: CB
authors.lastname: Terwee
authors.forename: Martin J
authors.initials: MJ
authors.lastname: Muller
authors.forename: Ferko G
authors.initials: FG
authors.lastname: Ory
authors.forename: Neil K
authors.initials: NK
authors.lastname: Aaronson
mesh_terms: D054242:Emigrants and Immigrants; D005060:Europe; D006304:Health Status; D006801:Humans; D009018:Morocco / Q000208:ethnology; D009369:Neoplasms / Q000208:ethnology* / Q000523:psychology*; D018579:Patient Selection / Q000941:ethics*; D011788:Quality of Life / Q000523:psychology*; D012106:Research; D014421:Turkey / Q000208:ethnology