The Covid 19 crisis has produced an important delay in the planned activities of the iLIVE Project, both because of the emergency situation experienced in hospitals and health centres and also because of the impossibility to carry out the interviews with patients and families in a safe way. This has been the case with one of the main studies that form part of the iLIVE project, the cohort study.
The main objective of the cohort study is to contribute to a higher quality end of life care, better adapted to the circumstances and wishes of each patient. To this end, the study will use a questionnaire survey aimed at patients with advanced disease and their families, formal and informal caregivers, and also the professionals themselves. This study was planned to start at the beginning of the year. At present, the different centres that take part are in the process of completing the necessary procedures to commence in the next few weeks.
This research project needs to receive approval from the ethics committees working with each of the centres involved. This is an essential step in all studies for the assessment and approval of methodological, ethical and legal aspects, ensuring that the whole study is respectful with the situation of the participants and that research objectives are explained in a direct and clear way. Likewise, the proposed questionnaires have undergone quality control and a trial period after which they are ready to be used in daily practise with patients and family members. The mayority of the countries have achieved the ethical approval for this study. At present we are finishing the electronic case report form (e-CRF) using Alea system that allows to fill and store the data directly in a safe environment.
The study will allow an approach to the concerns, expectations and preferences of the participants. The result will have two aspects, one qualitative and the other quantitative, which will help improve palliative care protocols and end of life care of these patients.
The other two major studies of this project, although well advanced in their procedures and planification, are still pending to be implemented due to Covid pandemic: the study of qualified hospital volunteers supporting patients in hospitals and the study of end of life medication adjustment to optimise palliative care treatments. Both studies are ready in order to be able to start at the end of this year, if the pandemic allows doing so.