TitleBurn Model System National Longitudinal Database Representativeness by Race, Ethnicity, Gender, and Age.
Publication TypeJournal Article
Year of Publication2021
AuthorsWolfe AE, Stockly OR, Abouzeid C, Rodríguez-Mercedes SL, Flores LE, Carrougher GJ, Gibran NS, Holavanahalli R, McMullen K, Trinh N-H, Zafonte R, Silver JK, Ryan CM, Schneider JC
JournalPM R
Date Published2021 Apr 22
ISSN1934-1563
Abstract

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: This study aimed 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: N/A 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: N/A 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 was more female and younger 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. Further, when looking at groups by race and gender and ethnicity and gender, 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. Additionally, strategies are needed to improve enrollment to ensure future representativeness.

DOI10.1002/pmrj.12618
Alternate JournalPM R
PubMed ID33886159