Measurement of Long-Term, Quality of Life Outcomes in Injury Databases

Traumatic injuries affect patients' long-term quality of life (QOL). In 2016, the National Academies highlighted the need to record long-term QOL outcomes within trauma databases. We studied national injury-specific databases to assess whether they capture QOL outcomes, and their key determinants, across the entire continuum of trauma care.

We coded variables in the Trauma Quality Program (TQP), Burn Care Quality Platform, and the Burn, Spinal Cord Injury (SCI), Traumatic Brain Injury (TBI) Model Systems databases to identify QOL and social determinants of health (SDOH) measures. We also calculated the proportion of variables collected across distinct phases of care (e.g., prehospital care, hospital care, rehabilitation care).

The databases ranged from 127 variables for Burn Care Quality Platform to 995 variables for SCI Model System. TQP collected data on prehospital, emergency department, and hospital care but did not collect outcomes after hospital discharge or measure QOL outcomes. In contrast, Model Systems databases captured information about long-term outcomes, including QOL information (Burn: 289 variables [33% of total variables]; TBI: 159 variables [25%], SCI: 115 variables [12%]). All databases measured SDOH, ranging from 12 variables (3%) in TQP to 67 variables (8%) in Burn Model System. Economic stability was the most frequently measured SDOH domain.

Despite the recognized need to measure and address QOL factors post-injury, there currently is no standardized system for capturing these long-term outcomes, except for patients enrolled in the SCI, TBI, and Burn Model System programs. The trauma community needs a national system to track long-term QOL outcomes in trauma survivors.