Extensive debate surrounds the practice of palliative sedation (PS, i.e. sedative drugs to lower consciousness in patients nearing death), particularly given reports of improper application, suboptimal performance and poor communication. Initiatives undertaken to date to evaluate and improve PS were focused on a single outcome domain unlikely to reflect overall sedation quality and thus, leading to an incomplete evaluation of the overall PS practice. In order to monitor and improve the practice, this project will develop, operationalize and validate an agreed standardized core outcome set (COS) for the evaluation of palliative sedation in clinical research and practice. We will 1) identify relevant outcomes by means of a systematic review and 20 semi-structured interviews; 2) prioritize these outcomes by multiple stakeholders and achieve convergence on their importance using the Delphi technique resulting in the COS; 3) identify outcome measurement instruments for all included outcomes in the COS through a scoping review; 4) determine how the outcomes should be measured through consensus meetings with representative stakeholders; and 5) assess validity and reliability of the COS through field-testing. This project is a necessary step to develop a gold-standard measurement instrument that can evaluate the overall practice of PS, and which would facilitate the design and evaluation of clinical trials and audits.
Potentially relevant COS from COMET database:
- Coping and wellbeing in bereavement: two core outcomes for evaluating bereavement support in palliative care > a COS focussing on bereaved families provides a different perspective from most COS and is something we are aiming for too.
- Development of a COS for neonatal palliative care (the NEO pace study) > also focussing on the perspective of the family and improving their experience
Indra Albrecht, PhD Candidate, Department of Public Health and Primary Care, Ghent University, Ghent, Belgium
Prof. Dr. Peter Pype, PI, Center for Interprofessional Collaboration in Education, Research and Practice, Ghent University, Ghent, Belgium.
Prof. Dr. Luc Deliens, Promotor, Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel, Brussels, Belgium
Prof. Dr. Kenneth Chambaere, Promotor, Department of Public Health and Primary Care, Ghent University, Ghent, Belgium
Dr. Lenzo Robijn, Supervisor, International Center for Reproductive Health, Ghent University, Ghent, Belgium
Dr. Joni Gilissen, external co-promotor, Research Centre Care in Connection, Karel de Grote University of Applied Sciences and Arts, Antwerp, Belgium
Disease Category: Anaesthesia & pain control
Disease Name: Palliative care, Palliative sedation
Age Range: 0 - 120
Sex: Either
Nature of Intervention: Palliative
- Clinical experts
- Families
- Patient/ support group representatives
- Researchers
- COS for clinical trials or clinical research
- COS for practice
- Consensus meeting
- Delphi process
- Focus group(s)
- Interview
- Literature review
Scoping review of the literature, focusgroup and semi-structured interviews with healthcare professionals and bereaved relatives, Delphi study and consensus meetings, field-testing