Routine inclusion of long-term functional and patient-reported outcomes into trauma registries: The FORTE project

BACKGROUND The National Academies of Sciences, Engineering, and Medicine (formerly the Institute of Medicine) recently recommended inclusion of postdischarge 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 FORTE (Functional Outcomes and Recovery after Trauma Emergencies) project, we included patients with an Injury Severity Score of 9 or greater, 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 after injury to participate in a telephone survey evaluating HRQoL (Short Form 12 [SF-12]), PROs (Trauma Quality of Life), posttraumatic stress disorder, return to work, residential status, and health care utilization. RESULTS Data were collected for 171 of 394 eligible patients: 85/189 (45%) at 6 months and 86/205 (42%) at 12 months; 25%/29% (6/12 months) patients could not be contacted, 15%/16% (6/12 months) declined to participate, and 15%/13% (6/12 months) were interested in participating at another time but were not reached again. Approximately 20% patients screened positive for posttraumatic stress disorder, and half had not yet returned to work. There were significant reductions in SF-12 physical composite scores relative to population norms (mean, 50 [SD, 10]) at 6 months (mean, 44; 95% confidence interval [CI], 41-47) and 12 months (45; 95% CI, 42-47); no difference was noted in the SF-12 mental composite scores (6 months: 51 [95% CI, 48-54]; 12 months: 50 [95% CI, 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' postinjury 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 Prognostic/epidemiologic, level II; Therapeutic, level III.