Original ArticleTranslated COOP/WONCA charts found appropriate for use among Turkish and Moroccan ethnic minority cancer patients
Introduction
The Dartmouth COOP Functional Health Assessment charts/WONCA (COOP/WONCA charts) aim to measure patients' health-related quality of life (HRQL) in an outpatient health care setting. They were designed to be used in everyday clinical practice to provide immediate feedback to clinicians about the health status of patients [1], [2], [3], [4], [5], [6]. This generic instrument includes six to nine (depending on the version) single-item measures, each with five response categories illustrated with pictograms, covering separate dimensions of HRQL. The instrument has shown to be reliable and valid in various international primary care settings [1], [3], [7], [8], [9], [10], [11] and has been used [12], [13], [14], [15], [16] and validated in oncology settings [17]. The COOP/WONCA charts have been translated into at least 19 languages (see PROQOLID database at www.proqolid.org).
In the Netherlands, Turks and Moroccans constitute approximately 4% of the general Dutch population and about 12% of the population in larger urban areas [18]. Many first generation Turkish and Moroccan patients lack proficiency in the Dutch language. In the Netherlands, 60% of the Turkish and Moroccan immigrants above 55 years of age have difficulties speaking Dutch [19]. This hampers the inclusion of these minority groups in clinical research, as translated and validated HRQL questionnaires in their mother tongue are not always available [20], [21]. The availability of a simple and quick HRQL measurement tool such as the COOP/WONCA charts is desirable for patients from ethnic minority groups who have difficulties speaking the dominant language in their current country of residence, as the time required for a routine medical visit might already be extended due to communication difficulties. Additionally, there is growing evidence that the use of such brief HRQL instruments can facilitate patient–physician communication, improve health care providers' awareness of their patients' symptom burden and functional limitations, increase patient satisfaction with care, and may even contribute to improved HRQL over time [2], [12], [13], [15], [16].
Many first generation Turkish and Moroccan patients experience difficulty in communicating with their health care providers and thus often bring along bilingual family members or friends (proxies) to medical visits. These proxies serve not only as interpreters for the patient, but are also an important alternative or complementary source of information about the patients' health status for the health care provider. However, the appropriateness of eliciting information from family members or friends needs to be addressed empirically. Although empirical work on the concordance between patient and proxy raters of HRQL has been assessed in western [22], [23], [24], [25], [26] and in non-western countries [27], [28], [29], [30], [31], [32], it has (to our knowledge) not been investigated among ethnic minorities.
In this article, we report the results of a psychometric evaluation of the translated COOP/WONCA charts for Turkish and Moroccan cancer patients and patient–proxy agreement. This investigation took place in the context of a larger study whose objective was to translate and validate four HRQL questionnaires (also including the SF-36, the EORTC QLQ-C30, and the Rotterdam Symptom Checklist) for use among Turkish and Moroccan cancer patients in the Netherlands.
The specific aims of the study were to (1) translate the COOP/WONCA charts into Turkish, Moroccan-Arabic, and Tarifit; (2) evaluate the psychometric properties of these translated versions; and (3) determine the viability of using Dutch-speaking relatives or friends of Turkish and Moroccan cancer patients as proxy sources of information on the patients' HRQL.
Section snippets
Instrument and translations
The COOP charts were developed to assess the health status of ambulatory care patients within the Dartmouth COOP Chart project [3], [4], [5], [6]. The instrument has undergone several revisions since its initial publication. One version was adopted by the Word Association of Family Doctors (WONCA) [3] and was translated into multiple languages. The WONCA version differs from the Dartmouth version in that it comprises six charts instead of nine, refers to the past 2 weeks instead of 4 weeks, and
Patient response and sociodemographic and clinical characteristics
A bilingual letter of invitation was sent to 140 Turkish and 175 Moroccan patients. Of these letters, 21 addressed to the Turkish patients and 34 to the Moroccan patients were not deliverable and up-to-date addresses and telephone numbers could not be obtained. Two Turkish and 3 Moroccan patients were excluded because they did not speak the language under study. Of the remaining patients, who were traceable and eligible, 90 Turkish and 79 Moroccan patients (48 of who spoke Moroccan-Arabic and
Discussion
In this article, we have reported the results of a study on the translation and validation of the COOP/WONCA charts in Turkish, Moroccan-Arabic, and Tarifit for use among Turkish and Moroccan ethnic minority cancer patients residing in the Netherlands. Additionally, we examined the viability of using Dutch-speaking relatives as proxy sources of information on the patients' HRQL. Approximately three-quarters of the Turkish patients and two-thirds of the Moroccan patients who participated in the
Acknowledgments
This study was supported by grant no. NKI 99-1724 from the Dutch Cancer Society.
The authors wish to thank the following individuals for their assistance in recruiting patients into the study: J.H. Schornagel, Department of Internal Medicine, The Netherlands Cancer Institute/ Antoni van Leeuwenhoek Hospital, Amsterdam; G. van Andel Department of Urology, Onze Lieve Vrouwe Gasthuis, Amsterdam; C.E.E. Koning, Department Radiotherapy, Medical Center Haaglanden, Den Haag; M.J.H. Schweitzer,
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