Administrative data in pediatric critical care research-Potential, challenges, and future directions

Abstract

Heterogenous patient populations with small case numbers constitute a relevant barrier to research in pediatric critical care. Prospective studies bring along logistic barriers and-if interventional-ethical concerns. Therefore, retrospective observational investigations, mainly multicenter studies or analyses of registry data, prevail in the field of pediatric critical care research. Administrative health care data represent a possible alternative to overcome small case numbers and logistic barriers. However, their current use is limited by a lack of knowledge among clinicians about the availability and characteristics of these data sets, along with required expertise in the handling of large data sets. Specifically in the field of critical care research, difficulties to assess the severity of the acute disease and estimate organ dysfunction and outcomes pose additional challenges. In contrast, trauma research has shown that classification of injury severity from administrative data can be achieved and chronic disease scores have been developed for pediatric patients, nurturing confidence that the remaining obstacles can be overcome. Despite the undoubted challenges, interdisciplinary collaboration between clinicians and methodologic experts have resulted in impactful publications from across the world. Efforts to enable the estimation of organ dysfunction and measure outcomes after critical illness are the most urgent tasks to promote the use of administrative data in critical care. Clever analysis and linking of different administrative health care data sets carry the potential to advance observational research in pediatric critical care and ultimately improve clinical care for critically ill children.

Keywords: adjustment; administrative data; confounding; diagnose related groups; international classification of disease (ICD); measurement of outcomes; pediatric critical care; severity of disease.

Figure 1

Different types of administrative data sets and possibilities of data linking using Germany as an example. DRG, diagnose related groups; ED, emergency department; *publicly available.