544 Examining the Characteristics of Eligible Burn Survivors Who Did Not Consent to Participate in a Longitudinal National Database

Abstract

Abstract Introduction As one of the largest prospective, longitudinal, multi-center research data repositories for burn survivors, the Burn Model System (BMS) National Database is in a unique position to explore the characteristics of burn survivors who choose not to participate in long-term research. Given recent shifts in research priorities to include underserved and vulnerable populations, the purpose of this study was to assess the extent to which the research population of the BMS National Database is representative. Methods Data from the BMS national database collected from 1994 through June 2019 were analyzed. Demographic characteristics were compared between individuals who did and did not consent to be participants of the BMS database. Regression analyses were used examine any correlation between demographic characteristics and study participation controlling for BMS site and eligibility criteria. Results A total of 7,451 burn survivors age 0–99 years old (6,418 consented; 1,033 did not consent) were included in the analysis. The two populations did not differ significantly by gender or race. However, individuals who did not consent for the BMS database were older and more often Hispanic/Latino (p< 0.001) (Table 1). In regression analyses, age and ethnicity were significant predictors for enrollment into the BMS database with individuals over 80 years of age being 80% less likely to consent and those who are Hispanic/Latino being approximately 66% less likely to consent (Table 2). Conclusions It is important to understand the extent to which the BMS database captures individuals most affected by burn injuries who are considered underserved or vulnerable. In this long-term study older adults (80+ years old) and individuals who identify as Hispanic/Latino were less likely to consent and enroll. Researchers are challenged to understand why these individuals are not participating in longitudinal research and develop strategies to improve enrollment in these vulnerable populations. Applicability of Research to Practice Underserved and vulnerable burn survivor populations must be represented in research studies to gather as much information as possible about their recovery and long-term outcomes. Information on outcomes is vital for care decisions.