Vlčková, Karolína

Background: Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation. Method: This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life.

Objective: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. Methods: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12‐month surprised question).