Abstract

BackgroundMental health conditions affect aspects of people’s lives that are often not captured in common health-related outcome measures. The OxCAP-MH self-reported, quality of life questionnaire based on Sen’s capability approach was developed in the UK to overcome these limitations. The aim of this study was to develop a linguistically and culturally valid German version of the questionnaire.MethodsFollowing forward and back translations, the wording underwent cultural and linguistic validation with input from a sample of 12 native German speaking mental health patients in Austria in 2015. Qualitative feedback from patients and carers was obtained via interviews and focus group meetings. Feedback from mental health researchers from Germany was incorporated to account for cross-country differences.ResultsNo significant item modifications were necessary. However, changes due to ambiguous wordings, possibilities for differential interpretations, politically unacceptable expressions, cross-country language differences and differences in political and social systems, were needed. The study confirmed that all questions are relevant and understandable for people with mental health conditions in a German speaking setting and transferability of the questionnaire from English to German speaking countries is feasible.ConclusionsProfessional translation is necessary for the linguistic accuracy of different language versions of patient-reported outcome measures but does not guarantee linguistic and cultural validity and cross-country transferability. Additional context-specific piloting is essential. The time and resources needed to achieve valid multi-lingual versions should not be underestimated. Further research is ongoing to confirm the psychometric properties of the German version.

Highlights

  • Mental health conditions affect aspects of people’s lives that are often not captured in common health-related outcome measures

  • The professional translation and linguistic validation process was coordinated by the Clinical Outcomes team at Oxford University Innovation, University of Oxford, UK and was carried out by PharmaQuest Ltd., a company specialising in the translation and linguistic validation of patient-reported outcome measures (PROMs)

  • Translation Twenty-nine phrases were translated from the English source questionnaire to German, of which sixteen phrases corresponded to the questions comprising the final OxCAP-MH instrument

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Summary

Introduction

Mental health conditions affect aspects of people’s lives that are often not captured in common health-related outcome measures. Connel et al (2014) found that aspects perceived by mentally ill people as the most important concerning their quality of life include quality of relationships, sense of belonging and acceptance, self-perception, autonomy and freedom of choice and feeling of hope [3]. These important aspects of well-being are often overlooked in the currently existing generic patient self-reported quality of life outcome measures (PROMs) [4, 5]. Saarni and colleagues (2010) found that existing self-reported quality of life questionnaires, EQ-5D in particular, are not sensitive enough and do not always correlate with the clinical outcomes or socio-economic situation of patients [8]

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