Translation and cross cultural adaptation of patient reported outcome measures (PROMs) is a necessary and important step toward clinical utility in countries and contexts other than the one in which the PROM was developed. In this article the novel use of community translation (CT) together with a shared decision making (SDM) approach is proposed as a method to improve translation and cross cultural adaptation. The translation and cross cultural adaptation of the Disabilities of the Arm, Shoulder and Hand (DASH) questionnaire will be used as an example to explain the method.
Community translation is an emerging subfield within translation studies. It is defined as the translation of text towards improved communication between persons without good command of mainstream language(s) and those working in the public service [1], such as health service providers. In CT the norm for the translation is set by the population the translation is intended for. Involvement of members of the population in the translation is preferred. The CT approach and non-parallel CT are types of CT approaches [2, 3]. Non-parallel CT implies that the target populations of the source text and the new language version are not on parallel literacy levels [2, 3]. Non-parallel translation aims to simplify text and include the use of para-texts (additions to the main text in order to highlight meaning) [2]. The CT approach assumes that there may be similarities between the target populations of the source and the translated versions, but the intention is to have a simplified translation [2, 3]. This is done by using simple language, short sentences, avoiding passive voice sentences and addressing the reader directly [2]. As an advocate of CT approaches Lesch argues that translation is embedded within a specific context [2]. Therefore the translation has to be done in such a way that it ties in with the contextual experience of the receiver of the translation, i.e. the target population [2].
Shared decision making is understood to be a component of evidence based practice [4]. At its core SDM is about incorporating the patients’ values and preferences in decisions that affect them. Légaré and Witteman state that cultural factors and factors affecting “patient-clinician” interactions such as trust and similarities or differences in language are important factors in SDM [5]. Much has been written about the introduction and measurement thereof (SDM) within the medical fraternity [6,7,8]. Most interestingly, a recent systematic review explored how the development of PROMs towards evaluating the outcome of SDM in clinical practice did not routinely involve patients in the development thereof [9]. SDM is traditionally applied in the interaction between health care professionals and patients as a collaborative effort towards making decisions about their health [10]. The concept of SDM is underpinned by the understanding that the patient has the right to be informed about their options and to choose the option most important to them based on their values and preference [5]. PROMs (such as the DASH) measure the outcome of such decisions as it relates to quality of life, symptoms and/or function [11]. Even though the principles of SDM may be applied in such interactions, there is a lack of evidence of patient involvement in the development or translation and cross-cultural adaptation of measures to evaluate the outcome of the decided intervention. We hypothesise that the introduction of SDM and CT during harmonisation of the DASH could lead to improved translation and cross cultural adaptation.
Developers of PROMs provide guidelines for translation and cross cultural adaptation which usually involve an iterative process of forward and backward translation followed by harmonisation and pretesting or cognitive interviewing (CI). Societies such as the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) present principles of good practice for translating and culturally adapting PROMs [12]. Researchers can also consider definitions and items from resources such as the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist when designing and conducting translation and cross cultural adaptation studies [13]. Similarly, the Patient-Reported Outcome Measurement Information System (PROMIS) offers standards for language translation and cultural adaptation based on the Functional Assessment of Chronic Illness Therapy (FACIT) translation methodology chart [14]. The present study concerns the translation and cross cultural adaptation of the DASH questionnaire into Afrikaans for the Western Cape (South Africa). The DASH questionnaire is a 30 item PROM, developed in 1996 by the Institute for Work and Health (IWH) (in Canada) as a measure of activity and participation, symptoms and disability in persons with upper limb conditions (in accordance with the International Classification of Functioning, Disability and Health) [15]. The DASH is used extensively in research and clinical practice by occupational therapists, physiotherapists and surgeons treating persons with upper limb conditions and has been translated into more than 50 languages across the world. This article reports on a component of a broader study that aims to translate and cross culturally adapt the DASH into Afrikaans for the Western Cape and evaluate the psychometric properties including content and structural validity, and clinical utility.
Clear guidelines are provided for the translation and cross-cultural adaptation of the DASH into a new language version [16]. The guidelines by Beaton, Bombardier, Guillemin and Ferraz, freely available from the DASH website, outline the five stage process for the translation and cross cultural adaptation of the DASH (Fig. 1). The principal investigator (PI) (and 1st author) communicated the intent to translate and cross culturally adapt the original English source version of the DASH to Afrikaans for the Western Cape. The stages of translation and cross-cultural adaptation recommended for approval of a translated version of the DASH by the IWH were carefully followed. Stage 1 to 3 were completed as per the recommendations. Stage 4 entails an expert review committee [16]. Beaton et al. recommend a panel consisting of the following individuals: the PI, the four translators (involved in the forward and back translation of the instrument), a linguistic expert, and two rehabilitation experts familiar with the instrument [16]. During this stage the committee is to review and consolidate the translations of the questionnaire. All the items must be assessed for conceptual, linguistic, semantic and idiomatic equivalence [16]. A pre-final version of the DASH is then produced for pretesting (including Cognitive Interviewing) in stage 5. It has however been reported that these expert committee reviews (stage 4) may generate a sample unrepresentative of the target population [9, 17]. In addition, authors have highlighted that the physical setting in which these take place is often a different environment from the setting in which the instrument will be administered [9, 18]. The target population in the present study consists of Afrikaans speaking individuals from low socio-economic backgrounds within the Western Cape of South Africa. Afrikaans is spoken by 13.5% of the population of South Africa and most widely used in the Western and Northern Cape of South Africa [19]. Blignaut highlights that there is great variation in the Afrikaans language that is “fed by differing social, cultural, geographical, situational and psychological contexts” [20], p 20. Lesch, in offering a CT approach, does not define the group (the population for whom the translated DASH is intended) as a political entity, linked to colour or race, but as a grouping of persons from a specific socio-economic background, juxtaposed with middle to high income groups [2]. This group can be further delineated by the fact that the majority are public health service users with low levels of education and little to no post school qualification. Many are not medically insured, generally unemployed and on low paying contract positions. A dialectic Afrikaans is spoken, different to standard Afrikaans, where little attention is paid to language and the use of simple language is the norm. Persons are described to be language impoverished [2, 3]. Characteristics of the language are dialectical use of language and code switching between non-standard Afrikaans and English [2, 20, 21]. In addition, written communications may be avoided through fear of not being able to communicate effectively [2].
The objective of this article is to propose the introduction of CT (specifically non-parallel CT and the CT approach) and SDM during Stage 4 (harmonisation) of the translation and cross cultural adaptation of the DASH. Reporting on the harmonisation of the Afrikaans for the Western Cape DASH will be used as an example to illustrate the approach.