What intensive care registries can teach us about outcomes

Critical care registries are synonymous with measurement of outcomes following critical illness. Their ability to provide longitudinal data to enable benchmarking of outcomes for comparison within units over time, and between units, both regionally and nationally is a key part of the evaluation of quality of care and ICU performance as well as a better understanding of case-mix. This review aims to summarize literature on outcome measures currently being reported in registries internationally, describe the current strengths and challenges with interpreting existing outcomes and highlight areas where registries may help improve implementation and interpretation of both existing and new outcome measures.

Outcomes being widely reported through ICU registries include measures of survival, events of interest, patient-reported outcomes and measures of resource utilization (including cost). Despite its increasing adoption, challenges with quality of reporting of outcomes measures remain. Measures of short-term survival are feasible but those requiring longer follow-ups are increasingly difficult to interpret given the evolving nature of critical care in the context of acute and chronic disease management. Furthermore, heterogeneity in patient populations and in healthcare organisations in different settings makes use of outcome measures for international benchmarking at best complex, requiring substantial advances in their definitions and implementation to support those seeking to improve patient care.

Digital registries could help overcome some of the current challenges with implementing and interpreting ICU outcome data through standardization of reporting and harmonization of data. In addition, ICU registries could be instrumental in enabling data for feedback as part of improvement in both patient-centred outcomes and in service outcomes; notably resource utilization and efficiency.