Ethnic minority patients' experiences of filling in translated patient-reported outcome measures.

Background: Problems assessing migrant patients' pain may cause inadequate treatment. Standardised patient-reported outcome measures (PROMs) are used as basis for tailoring treatment plans. This study investigates patients' experiences of filling in PROMs translated into their home language. Design and methods: Explorative design with in-depth interviews with 12 patients speaking the target languages Urdu, Somali, Arabic and Polish. The data analysis was inductive, thematic and hermeneutic in character. Results: Many interviewees found concepts used in the PROMs difficult to understand. Several viewed questions about mental health, suicide and sexual activity as taboo. Some of the PROM questions/answer options did not fit their situation and/or experience. Completing six different PROMs was exhausting. Discussion: Idiomatic and dialectic variations as well as diverse cultural backgrounds influence how concepts and questions were understood and made completing the PROMs challenging. Translations, although technically correct, must be understandable in the cultural context in which they are to be used. Some questions/response options do not reflect lived experience, and/or are couched in language reflecting biomedical understanding of illness. Culture, religion, traumatic experiences, migration-induced stress etc. shape individuals' understanding and expression of health problems and symptoms. Secrecy and not sharing information is often an adaptive response to avoid shame. Conclusion: Although the PROMs used were translated by professional translators, cultural, religious and educational backgrounds influence how concepts and questions are comprehended. Questions considered too private/taboo might be ignored. These problems may lead to seriously impaired treatment outcomes.