Exploring the similarities and differences of data variables collected by burn registers globally: results from a data dictionary comparison study

Yvonne Singer Emily Bebbington², Joanna Miles³, Mike Peck⁵, Ken Dunn⁶, Amber Young⁴,
¹Victorian Adult Burn Service, Prahran, Victoria, Australia
²Centre for Mental Health and Society, Bangor University, Wrexham Wales
³Norfolk and Norwich University Hospital, Norwich England
⁴Bristol Centre for Surgical Research, Bristol England
⁵Arizona Burn Center, Valleywise Health Medical Center, Phoenix United States
⁶Burn Care Informatics Group, NHS England

Abstract

Introduction
Burn registries can provide high quality clinical data that can be used for surveillance, research, planning service provision, and clinical quality assessment. Many burn registries now exist, but data variables are not standardised internationally. The aim of this project was to compare data variables collected in burn registries internationally to understand similarities and differences.

Methods
Registry custodians were invited to participate and share data dictionaries. Inclusion and exclusions criteria were compared to understand potential selection bias. Descriptive statistics were calculated. Common variable themes were analysed. Detailed information on definition, method and timing of measurement, were compared for some data variables.

Results
Inclusion criteria varied greatly between registries. Median number of collected variables was 94 (range 28 – 890). Six themes (Patient information, admission details, injury, inpatient, outpatient, other) and 41 sub-themes were identified. The largest subtheme was inpatient complications. Between registries, demographic and basic injury information such as age and timing of injury are comparable with minimal adjustment. The variables for intent, mechanism, inhalational injury, infection, and survival show some similarities, but require more translation and assumptions for inter-registry comparisons.

Conclusions
Pooling of international data enables investigation of rarer exposures and outcomes, tracking of emerging trends, investigation of how disease processes are affected by sociocultural factors, and embedding trials. Some variables were readily comparable. However, differences between could introduce bias into inter-registry data comparisons. Study results will be of interest to registry custodians and researchers wishing to explore international data comparisons, and countries wishing to establish their own burn registry.

Biography

Yvonne works part time as the Quality Program Coordinator at the Victorian Adult Burn Service, and is completing her PhD through Griffith University. Yvonne’s PhD research work will contribute to an implementation science research project funded by the US Department of Defence to translate 20 minutes of cool running water (within three hours of injury) scientific evidence into clinical practices of Sacramento County Emergency Medical Services and the UC Davis Medical Centre Emergency Department.
Yvonne is also fond of burn registries, human factors, patient safety, and understanding the complexity of recognising and responding to deterioration in burn patient populations.