Burn Model System National Longitudinal Public Access Dataset 2024

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:

• 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; and
• Southern California Burn Model System (SCBMS) in Los Angeles, California

Past 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): ·

• 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. 

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. 

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.

Geographic Coverage:  United States

Time Period(s):   1994 – 2024 (Lifespan of BMS (and ongoing))

Collection Date(s):  1994 – 2022 (Data collection dates for this public access dataset)

Universe:   Burn survivors meeting BMS inclusion criteria (described in summary of project)

Data Type(s):    clinical data; medical records; survey data; text

Collection Notes: 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.  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.  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.

Response Rate:  Varies across BMS Center and year of data collection.

Sampling:   All eligible participants are approached for inclusion into the study.

Data Source:   Self report surveys and medical record abstraction.

Collection Mode(s):  View help for Collection Mode(s) face-to-face interview; mail questionnaire; on-site questionnaire; paper and pencil interview (PAPI); record abstracts; telephone interview; web-based survey

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. 
 

Unit(s) of Observation:   Individual

Geographic Unit:   United States