For the iLIVE Project, 2023 will mean the culmination of a journey started three years ago. The recent consortium meeting held in Liverpool in october helped the different research teams to prepare for the end of the research. The work packages are in the last phases of data recollection and with all the analysis tools prepared to work in the results of the study in the upcoming months.
The Cohort Study has recruited more than 1,500 people between patients and relatives. The aim of this part of the study is to provide in-depth understanding of the concerns, expectations and preferences of dying patients and their formal and informal caregivers. Some of the challenges for this task are related to the difficulties of working with patients that are too ill, but also with the situation of the Covid-19 pandemic. The teams have also been working closely with clinical staff to inform them about the project and the future benefits it will provide.
The Medication Study have reached more than 150 patients. This part of the research will develop and evaluate a digital clinical tool to optimize medication management for patients who are in the last months of life. A study on deprescribing medicaments in the last phase of life has already been completed and the results will be shared in a paper that is already being prepared.
The Volunteer Study has been working with a group of patients to evaluate the benefits of a volunteer training programme to support patients dying in the hospital and their families. Some of the results have already being presented in a paper about the training program developed for volunteers.
One of the biggest challenges for this project comes from the cultural differences between the different countries taking part in the research. This affects the experiences, preferences and concerns of patients and family members. The project has already conducted analyses on the personal interviews made about this topics.
A delphi study has also been completed for the Core Outcome Set. This part of the project works to identify the most important outcomes of care for dying patients from the perspective of patients, family members and health care professionals. Also how all this fits in with existing end-of-life care quality registries and quality indicators.
Another big part of the success of the study depends on the data management. Specific tools to manage the data with the highest standards for safety and to protect the privacy of the participants are in force in the study since the beginning. In Liverpool the teams had the opportunity to keep advancing on the tools for the sharing of data and coordination between the different teams along this lines.