DOI: 10.3886/e209847v1
title: Burn Model System National Longitudinal Public Access Dataset 2024

description: Severe burns are one of the most complex forms of
traumatic injury. People with burn injuries often require long-term
rehabilitation. Survivors of a burn injury often have a wide range of physical
and psychosocial problems that can affect their quality of life. The Burn Model
System (BMS) program began in 1994, with funding from the National Institute on
Disability, Independent Living, and Rehabilitation Research (NIDILRR), in the
Administration of Community Living and the U.S. Department of Education. The
BMS program seeks to improve, through research, care and outcomes for people
with burn injuries. Its research programs are housed in clinical burn centers
that provide a coordinated and multidisciplinary system of rehabilitation care,
including emergency medical, acute medical, post-acute, and long-term follow-up
services. In addition, and with funding from NIDILRR, each BMS center conducts
research and contributes follow-up data to the BMS National Data and
Statistical Center (BMS NDSC). The four BMS centers are: <br>Boston-Harvard Burn Injury Model System
(BH-BIMS) in Boston, Massachusetts North Texas Burn Rehabilitation Model System
(NTBRMS) in Dallas, Texas Northwest Regional Burn Model System (NWRBMS) in
Seattle, Washington; andSouthern California Burn Model System (SCBMS) in
Los Angeles, CaliforniaPast centers include the University of Texas Medical Branch
Burn Injury Rehabilitation Model System in Galveston, Texas, the Johns Hopkins
University Burn Model System in Baltimore, Maryland, the University of Colorado
Denver National Data and Statistical Center, and the University of Colorado
Denver Burn Model System Center.The BMS NDSC supports the research teams in the
clinical burn centers. It also manages data collected by the BMS centers on
more than 7,000 people who have received medical care for burn injuries. The
data include a wide range of information—including pre-injury; injury; acute
care; rehabilitation; recovery; and outcomes at 6, 12, 24 months, and every
five years after the burn injury. To be included in the database, the burn
injuries of participants must meet several criteria (as of 2015):

·<br>More than 10% total body surface area (TBSA)
burned, 65 years of age and older with burn surgery for wound closure;More than 20% TBSA burned, 0–64 years of age
with burn surgery for wound closure; Electrical high voltage/lightning injury with
burn surgery for wound closure; or Hand burn and/or face burn and/or feet burn with
burn surgery for wound closure.In 2015, the BMS began a major initiative to collect data
every five years after the injury and to collect new psychometrically sound,
patient-reported outcome measures. <br>On December 31, 2023, the database contained
information for 4,913 adults (18 years of age and older at the time of burn)
and 2,402 children (17 years of age and younger at the time of burn). 

The BMS program disseminates evidence-based information to
patients, family members, health care providers, educators, policymakers, and
the general public. The BMS centers provide information in many ways: peer-reviewed
publications, presentations at national professional meetings, fact sheets
about different aspects of living with a burn injury, newsletters for patients
on BMS research and center events, outreach satellite clinics for patients
living in rural areas, and peer-support groups. <br>The BMS program also
collaborates with the NIDILRR-funded Model
Systems Knowledge Translation Center to promote the adoption of research
findings by rehabilitation professionals, policymakers, and persons with burn
injuries and their family members. 

The BMS program establishes partnerships to increase the
overall impact of research; information dissemination; and training of
clinicians, researchers, and policymakers. Current partners include the American Burn Association (ABA) and the Phoenix Society. Together, these
partners help the BMS to ensure that NIDILRR-funded research addresses issues that
are relevant to people with burn injuries.
description: Response Rates: Varies across BMS Center and year of data collection.<br>
description: Presence of Common Scales: Measures in the surveys have changed over time; currently they include
PROMIS measures, which can be compared to national population norms, the PROMIS
Global, the Satisfaction with Life Scale, and more. The pediatric surveys (administered to
pediatric participants and parent proxies for participants under the age of 18)
include NIH Toolbox measures and PROMIS measures. Due to the longitudinal nature of the study,
participants are recruited at each clinical center in an ongoing manner, as
they become eligible for the study. <br><br>
description: All eligible participants are approached for inclusion into the study.<br>
description: Burn survivors meeting BMS inclusion criteria (described in summary of project)<br>. Smallest Geographic Unit: United States
description: face-to-face interview; mail questionnaire; on-site questionnaire; paper and pencil interview (PAPI); record abstracts; telephone interview; web-based survey; The BMS National Longitudinal Database collects data over time on burn
survivors who meet study criteria.  Data
is collected using self-report surveys that are handed to participants or
mailed to them; additional data collection methods include interviews in person
or over the phone and online surveys. 

  <br><br>Measures in the surveys have changed over time; currently they include
PROMIS measures, which can be compared to national population norms, the PROMIS
Global, the Satisfaction with Life Scale, and more.  The pediatric surveys (administered to
pediatric participants and parent proxies for participants under the age of 18)
include NIH Toolbox measures and PROMIS measures.  Due to the longitudinal nature of the study,
participants are recruited at each clinical center in an ongoing manner, as
they become eligible for the study. 

 

<br><br>Surveys are administered at discharge, 6 months, 12 months, 24 months,
and then every 5 years post injury.  Due
to the mobile nature and long term participation in the study, the different
administration modalities (in person interviews, over the phone interviews, and
self-report surveys) are necessary in order to collect as much data, with as
little attrition as possible.