Lost in Translation? A Scoping Review to Explore the Translation and Cultural Adaptation of Preference-Based Measures of Quality of Life

BACKGROUND: Preference-based measures (PBMs) of quality of life are an important tool to inform the evaluation of health and social care interventions and services. Traditionally, PBMs have tended to be developed in a single country, therefore, reflecting the linguistic and cultural norms of that country. Given increases in the cultural and linguistic diversity of populations in many countries, it is important that PBMs are culturally and linguistically adapted. Linguistic adaptation ensures the translated words are correct and accurate, whilst cultural adaptation ensures the meaning and relevance of the concepts are understood as intended by the target audience. Several different guidelines for translation and cultural adaptation exist, including the guidelines developed by the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). OBJECTIVE: The aim of this scoping review was to outline which PBMs have been translated and/or culturally adapted and specify any guidelines that have been followed. METHODS: Four databases (PubMed, SCOPUS, Web of Science, CINAHL) were searched (February 2025) along with grey literature to identify studies that had translated and/or culturally adapted PBMs. RESULTS: Forty-seven articles were included in the review. Translations of PBMs were common, but there was typically limited information about whether PBMs had been culturally adapted. The studies varied significantly as to whether guidelines had been followed and what steps were taken in the process. CONCLUSION: This review highlights the variable transparency and inconsistency in the methods adopted for the translation and cultural adaptation of PBMs. The application of standardised translation and cultural adaptation guidelines, such as the ones developed by ISPOR, would enhance the methodological quality and cultural validity of PBMs.