Translation and cultural adaptation of IPOS (integrated palliative care outcome scale) in Estonia

Background Patient Reported Outcome Measures (PROMs) are questionnaires that could be used in palliative care (PC) to evaluate patient well-being and monitor their care. PROMs enable a focus on what is important to patients by putting the patient at the center of care. Adapting an existing PROM requires considering cultural differences, general usability and understandability of translated terms. Aim To translate and culturally adapt both the patient and staff three and seven day versions of the Integrated Palliative care Outcome Scale (IPOS) into Estonian. The IPOS consist of 10 questions (staff versions 9 questions) and 17 close ended items. The sub aim is to describe the differences and discrepancies found during the adaptation process and compare the results with previous research. Methods The translation and adaptation process of IPOS was conducted using recommended guidelines consisting of six phases and included cognitive interviews with patients (n = 11) and palliative care multidisciplinary team members (n = 8). The study was conducted in two major Estonian hospitals. Results The Estonian IPOS demonstrated face and content validity, acceptance by patients and staff. As a result of expert group review and cognitive interviews with patients and staff, 9 semantic changes were implemented. Conclusions Patient and staff versions of the IPOS with a recall of 3 or 7 days were translated and culturally adapted for Estonia. The Estonian IPOS four versions are ready for use in Estonia.