RESUMEN
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.
RESUMEN
BACKGROUND: Gastric cancer (GC) is among the most common cancers and one of the leading causes of cancer deaths globally. In general, the incidence of GC has declined and survival improved in Europe. Nevertheless, previous analysis has shown that survival of GC patients in Estonia is still significantly lower compared to some European countries. Therefore, to improve patient outcomes, better overview of GC epidemiology is needed. The aim of this study was to describe the incidence and survival of GC in Estonia 1995-2014 in relation to age, subsite, morphology, and the extent of disease. MATERIAL AND METHODS: We used data from the population-based Estonian Cancer Registry on all incident cases of GC diagnosed in 1995-2014. Incidence rates and relative survival were calculated. Joinpoint regression modeling was used to estimate annual percentage change for incidence trends. Data were analyzed by age, sex, subsite, morphology, and the extent of disease. Changes between 1995-1999 and 2010-2014 were assessed. RESULTS: The overall incidence of GC in Estonia decreased in 1995-2014. The age-standardized (world) incidence declined significantly for both sexes, for patients below 70 years of age, adenocarcinomas, NOS and other morphologies, non-cardia and unspecified cases, and for all known stages. Approximately 40% of GC cases were diagnosed with distant metastasis. Overall age-standardized 5-year relative survival of GC patients increased from 20% to 28%. Survival improved the most in age group 50-69 years. A large survival gain was also seen for localized (from 55% to 70%) and locally/regionally spread disease (from 23% to 37%). CONCLUSIONS: In Estonia, the incidence of GC has declined and relative survival increased. However, special emphasis needs to be put on improving survival among men, elderly and in patients with metastatic disease.
