Burn model system national longitudinal database representativeness by race, ethnicity, gender, and age

Introduction Representativeness of research populations impacts the ability to extrapolate findings. The Burn Model System (BMS) National Database is one of the largest prospective, longitudinal, multi-center research repositories collecting patient-reported outcomes after burn injury. Objective To assess if the BMS Database is representative of the population that is eligible to participate. Design Data on adult burn survivors who were eligible for the BMS Database from 2015 to 2019 were analyzed. Setting Not applicable. Participants Burn survivors treated at BMS centers meeting eligibility criteria for the BMS Database. Eligibility for the database is based on burn size and receipt of autografting surgery. Interventions Not applicable. Main Outcome Measure(s) Race, ethnicity, gender, and age were compared between individuals who did and did not enroll. Regression analysis examined the correlation between demographic characteristics and study enrollment. Additional regression analysis examined the association between enrollment and the intersection of race, ethnicity, and gender. Results A total of 982 adult burn survivors were eligible for the BMS database during the study period. Of those who were eligible, 72.1% Enrolled and 27.9% were Not Enrolled. The Enrolled group included more female and more younger survivors compared to the Not Enrolled group. In regression analyses, Black/African American burn survivors were less likely and individuals identifying as female were more likely to enroll in the BMS Database. Furthermore, White men and women were more likely to enroll compared to Black/African American men and women, and non-Hispanic/Latino men were more likely to enroll compared to Hispanic/Latino men. Conclusions This study found differences in BMS Database enrollment by race, ethnicity, and gender. Further research is warranted to investigate causes for the disparities found in this study. In addition, strategies are needed to improve enrollment to ensure future representativeness.