A Process to add Long-Term Outcomes into the American Burn Association's Burn Registry - Feasibility to Bridge the Gap

Background Burn registries play a crucial role in enhancing the understanding of burn epidemiology and improving clinical care. However, they often lack comprehensive data on post-discharge outcomes when patients transition to outpatient care. This study aimed to initiate the expansion of the American Burn Association's registry to include long-term outcomes for patients receiving outpatient follow-up post-discharge. Materials and Methods The Quality of Burn Registry Outpatient Work Group identified nine key long-term outcomes - five clinical and four psychosocial - to track after discharge from burn centers. An alpha pilot study was conducted with seven verified burn centers, collecting data on enrolled patients over 12 months in three-month intervals. A subsequent beta pilot involved ten centers, each monitoring five patients across five predefined cohorts. Results The alpha pilot enrolled 29 patients, revealing variable documentation and data retrieval times of up to 15 minutes per patient. The beta pilot encompassed 200 patients and recorded 1417 appointments, averaging 7.1 visits per patient. Notably, 25% of patients were lost to follow-up, and 22% were discharged from care within 12 months. Follow-up visits were most concentrated in the first three months (53.6%). Discussion This study represents a pioneering effort to systematically collect long-term outcomes for major burn injury survivors during the first year post-discharge. The findings will support ongoing improvements in best practices for burn care and enhance continuity between inpatient and outpatient monitoring, ultimately benefiting quality improvement initiatives for burn-injured patients in the future.