Background: The National Academies of Sciences, Engineering, and Medicine (formerly the Institute of Medicine) recently recommended inclusion of post-discharge health-related quality of life (HRQoL) and patient-reported outcomes (PROs) metrics to benchmark the quality of trauma care. Currently, these measures are not routinely collected at most trauma centers. We sought to determine the feasibility and value of adding such long-term outcome measures to trauma registries. Methods: As part of the Functional Outcomes and Recovery after Trauma Emergencies (FORTE) project we included patients with an ISS >=9, admitted to the Brigham and Women's Hospital in Boston, MA who were identified retrospectively using the institutional trauma registry and contacted 6 or 12-months post-injury to participate in a telephone survey evaluating: HRQoL (Short Form-12 [SF-12]), PROs (Trauma Quality of Life [T-QoL]), post-traumatic stress disorder (PTSD), return to work, residential status, and healthcare utilization. Results: Data were collected for 171 of 394 eligible patients: 85/189 (45%) at 6mo and 86/205 (42%) at 12mo. 25%/29% (6/12mo) patients could not be contacted, 15%/16% (6/12mo) declined to participate, and 15%/13% (6/12mo) were interested in participating at another time but were not reached again. Approximately 20% patients screened positive for PTSD and half had not yet returned to work. There were significant reductions in SF-12 physical composite scores relative to population norms (mean [SD]= 50[10]) at 6mo (mean [95%CI]= 44[41-47]) and 12mo (45[42-47]); no difference was noted in the SF-12 mental composite scores (51[48-54]/50[46-53]). Conclusions: Trauma patients reported considerable impairment 6 and 12 months after injury. Routine collection of PROs and HRQoL provides important data regarding trauma outcomes beyond mortality and will enable the development of quality improvement metrics that better reflect patients' post-injury experiences. Improved and alternate methods for collection of these data need to be developed to enhance response rates before widespread adoption across trauma centers in the United States. Level of Evidence: Level III - Therapeutic/Care Management (C) 2017 Lippincott Williams & Wilkins, Inc.
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