TY - JOUR
T1 - Burn model system national longitudinal database representativeness by race, ethnicity, gender, and age
AU - Wolfe, Audrey E.
AU - Stockly, Olivia R.
AU - Abouzeid, Cailin
AU - Rodríguez-Mercedes, Silvanys L.
AU - Flores, Laura E.
AU - Carrougher, Gretchen J.
AU - Gibran, Nicole S.
AU - Holavanahalli, Radha
AU - McMullen, Kara
AU - Trinh, Nhi Ha
AU - Zafonte, Ross
AU - Silver, Julie K.
AU - Ryan, Colleen M.
AU - Schneider, Jeffrey C.
N1 - Funding Information:
Dr. Schneider reports grants from NIDILRR during the conduct of the study and grants from NIDILRR and the U.S. Department of Defense outside of the submitted work. Dr. Silver reports grants from Arnold P Gold Foundation and Binational Science Foundation outside of the submitted work. Dr. Ryan reports grants from NIDILRR and Shriner's Hospitals for Children during the conduct of this study. Dr Zafonte reports receiving royalties from (1) Oakstone for an educational CD‐ Physical Medicine and Rehabilitation a Comprehensive Review; and (2) Springer/Demos publishing for serving as co‐editor of the text Brain Injury Medicine. Dr Zafonte serves on the Scientific Advisory Board of Myomo, Oxeia Biopharma, ElMINDA, and Biodirection. Dr. Gibran, Ms. Carrougher, and Ms. McMullen report grants from the NIDILRR during the conduct of this study. No other authors have anything to disclose.
Funding Information:
This work was supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR; grant #’s 90DPBU0001, 90DPBU0002, and 90DBPU0004). NIDILRR is a center within the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS). The contents of this manuscript do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.
Publisher Copyright:
© 2021 American Academy of Physical Medicine and Rehabilitation.
PY - 2022/4
Y1 - 2022/4
N2 - 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.
AB - 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.
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U2 - 10.1002/pmrj.12618
DO - 10.1002/pmrj.12618
M3 - Article
C2 - 33886159
AN - SCOPUS:85108349275
SN - 1934-1482
VL - 14
SP - 452
EP - 461
JO - PM and R
JF - PM and R
IS - 4
ER -