Short project description
In this four-year project, which is coordinated by the ErasmusMC in Rotterdam, researchers from 11 countries will collaborate to increase our knowledge and provide applicable policy advice on palliative care in Europe. The iLIVE project will investigate the effectiveness and cost-effectiveness of two innovative interventions in end-of-life care. Its objective is to develop and evaluate a digital clinical tool to optimize medication management to relieve symptoms that occur at the end of life, and an international volunteer programme to support patients dying in the hospital and their families. A prospective cohort study will collect data on the concerns, expectations and preferences concerning dying and end-of-life care, of terminally ill patients and their caregivers and deliver the first Core Outcome Set for care of the dying.
Our part in Cologne is to collect data on these issues at the individual level and we will also relate the findings on individual participants to broader cultural and religious values. Within the cohort, data will be collected upon patients’ inclusion in the study (baseline assessment), one month after inclusion (follow-up assessment 1), in the last days of life (follow-up assessment 2), and 90 days post-bereavement (follow-up assessment 3).
In principle, all competent adult patients with a life-limiting disease are eligible, regardless of their diagnosis, gender or age, or place of residence. To define eligibility for the study, we will use a modified version of the Gold Standards Framework Proactive Identification Guidance (GSF-PIG) that includes the ‘surprise question’ (SQ) and the Supportive and Palliative Care Indicators Tool (SPICT).
