Central curation of Glasgow Outcome Scale-Extended data: lessons learned from TRACK-TBI

Citation

Boase K, Machamer J, Temkin NR, Dikmen S, Wilson L, Nelson LD, Barber J, Bodien YG, Giacino JT, Markowitz AJ, McCrea MA, Satris G, Stein MB, Taylor SR & Manley GT (2021) Central curation of Glasgow Outcome Scale-Extended data: lessons learned from TRACK-TBI. Journal of Neurotrauma, 38 (17), pp. 2419-2434. https://doi.org/10.1089/neu.2020.7528

Abstract
The Glasgow Outcome Scale (GOS) in its original or extended (GOSE) form is the most widely used assessment of global disability in traumatic brain injury (TBI) research. Several publications have reported concerns about assessor scoring inconsistencies, but without documentation of contributing factors. We reviewed 6801 GOSE assessments collected longitudinally, across 18 sites in the 5-year, observational Transforming Research and Clinical Knowledge in TBI (TRACK-TBI) study. We recorded error rates (i.e., corrections to a section or an overall rating) based on site assessor documentation and categorized scoring issues, which then informed further training. In Cohort 1 (n=1261; 2/2014-5/2016), 24% of GOSEs had errors identified by central review. In Cohort 2 (n=1130; 6/2016-7/2018), acquired following curation of Cohort 1 data, feedback, and further training of site assessors, the error rate was reduced to 10%. GOSE sections associated with the most frequent interpretation and scoring difficulties included whether current functioning represented a change from pre-injury (466 corrected ratings in Cohort 1; 62 in Cohort 2), defining dependency in the home and community (163 corrections in Cohort 1; 3 in Cohort 2); and return to work/school (72 corrections in Cohort 1; 35 in Cohort 2). These results highlight the importance of central review in improving consistency across sites and over time. Establishing clear scoring criteria, coupled with ongoing guidance and feedback to data collectors, is essential to avoid scoring errors and resultant misclassification, which carry potential to result in “failure” of clinical trials that rely on the GOSE as their primary outcome measure.

Keywords
GOSE; traumatic brain injury; clinical outcome assessments; central review; data curation

Journal
Journal of Neurotrauma: Volume 38, Issue 17

• Published version