The profile of Intensive Care Unit (ICU) survivorship has been brought into sharp focus due to the COVID-19 pandemic. Following critical illness, patients can experience clinically important physical, emotional and cognitive symptoms. These problems can have major implications for the patient and healthcare system.
Less focus has been placed on the outcomes experienced by family members and caregivers of ICU survivors. This vulnerable group often have a challenging trajectory across the critical illness care continuum and are known to experience emotional and social problems. While these problems are important and recommended to be included in studies, they are usually partially included or not included at all. This potentially underestimates the impact of critical illness on wider social structures.
There is an urgent need to optimise and standardise outcome measures for this important and emerging cohort, in order to improve clinical services and research. The aim of this project is to define a core outcome set (COS) for critical care studies involving family members or caregivers.
Co- Principal Investigators:
Professor Joanne McPeake
University of Cambridge
Professor Bronwen Connolly
Wellcome-Wolfson Institute for Experimental Medicine
Queen’s University Belfast
Co-investigators:
Professor Nazir Lone
University of Edinburgh
Dr Peter Hartely
University of Cambridge
Ms Claire Brown
Cambridge University Hospitals
Disease Category: Other
Disease Name: Critical illness
Age Range: 18 - 100
Sex: Either
Nature of Intervention: Intensive care
- Clinical experts
- Families
- Methodologists
- Patient/ support group representatives
- Researchers
- Service providers
- Service users
- Consumers (caregivers)
- COS for clinical trials or clinical research
- Recommendations for outcome measures (measurement/how)
- Consensus meeting
- Delphi process
- Systematic review
Phase 1
Am updated systematic review of outcome reporting from existing studies involving family members of critical care patients. Outcomes will be reported and synthesised including definition and detail of primary and secondary outcomes, measurement variables, analysis metrics, method of aggregation, time-point of measurement and classification of the outcome.
Phase 2
A two-stage Delphi process to firstly establish stakeholder consensus on core outcomes considered priority for future research and secondly determine outcome measurement instrument selection. The findings of the systematic review from Phase 1 will form the basis of this consensus.
Consensus meeting: if required, we will conduct consensus meetings to minimise unnecessary overlap on outcomes and/or convene expert clinical and statistical agreement on appropriate measures and metrics.