The Research and Development theme incorporates a suite of project groups intended to strengthen worldwide commitment and capacity to undertake high quality, robust research in this complex and critical area of care.
Our current projects cover a range of cross cutting themes and methodologies, including quality outcomes and indicators, enabling the generation of valid, reliable and transferable evidence to support important developments and advances in clinical practice and policy.
Live Well, Die Well: A research programme to support living until the end (iLIVE)
The EU Horizon2020-funded iLIVE project will provide in-depth understanding of the concerns, expectations and preferences of dying patients and their caregivers. This will be achieved through a 10-country prospective cohort study of 2,000 patients with a life expectancy of six months or less, across different settings, diagnoses, ages, genders, socio-economic and religious groups.
Two clinical trials are embedded within the cohort study:
A digital clinical tool to optimize medication management to relieve symptoms that occur at the end of life.
A volunteer programme to support patients, and their families, dying in the hospital setting.
A specific work package within the iLIVE project will develop the first internationally agreed Core Outcome Set (COS) for care of the dying. A COS is an agreed set of standardised outcomes to be measured and reported in clinical trials. The study methodology has been submitted for publication in BMC Palliative Medicine.
International Care of the Dying Evaluation (iCODE):
An ERANet LAC-funded research project using the CODETM questionnaire to evaluate bereaved relatives views on care of the dying across seven member countries.
This project has conducted an international survey of bereaved people across seven participating countries, which involved:
Undertaking an observational study of bereaved relatives’ views on the quality of care within hospital settings.
Developing an international version of the ‘Care Of the Dying Evaluation’ (CODETM) post-bereavement questionnaire as an international standard and benchmarking tool.
Using generated data to implement key changes in clinical care using international cooperation, and involving bereaved relatives in the action planning to assess the immediate direct impact of these changes.
The final conference for this project took place in November 2019 at the International Collaborative for Best Care for the Dying Person Annual Symposium, with all work on the project being completed in January 2020. Two papers have thus far been published, and more are currently in preparation.