|Dataset full name:||Burn Injury Model Systems|
|Summary||The BMS data are collected through the four Burn Injury Rehabilitation Model Systems centers (BIMSC). The BIMSC are customized programs for severe burns for all age groups within different regions. The programs support research and multidisciplinary care and rehabilitation services for individuals with severe burns. Each center is involved in the collection of data, and conducts specific research with the goal of improving long-term functional, psychosocial, and quality-of-life outcomes with the objective to improve survival rate, retain normal physical function and promote psychosocial adaptation for individuals with severe burns. BMS includes data on children and measures including children’s health-related quality of life (HRQOL). The Burn Model Systems Data Coordinating Center (DCC) supports and directs the collection, management and analysis of the BMS center data.|
|Key Terms||Burn, NIDILRR, Model System, Rehabilitation, Outcomes|
|Sponsoring Agency/Entity||Department of Health and Human Services (HHS) Administration for Community Living (ACL) National Institute for Disability, Independent Living, and Rehabilitation Research (NIDILRR)||Health conditions/Disability measures|
|Disability Measures||Adult: Cognitive disability, Functional limitations (ADLs and/or IADLs), Hearing disability, Independent living disability, Mental health disability, Physical disability, Self-care disability, Special equipment use/assistive technology, Visual disability, Work limitation Pediatric: Cognitive disability, Communication impairment, Functional limitations (ADLs and/or IADLs), Hearing disability, Mental health disability, Physical disability, Visual disability||Measures/outcomes of interest|
|Topics||Demographics: Age, Gender, Race, Marital status, Education, Zip code, Living setting, Employment Pre- burn information: Pre-injury information, Injury risk factors in the patient’s family environment Cause of Burn and Severity of Burn: Burn demographics, Parts of body burned, Burn injury characteristics, Burn complications, Respiratory problems Treatments: Graft information, Pressure garment information, Physical therapy and occupational therapy intervention (range of motion, amputation, heterotopic information, scar information) Hospital information: Re-hospitalizations, Length of stay, Total number of inpatient rehabilitation days, Discharge location, Payer status, Treatment costs Outcomes: Distress level, Satisfaction with appearance scale, Scar information, Longitudinal psychological and physical functional assessment, Vocational and school assessment follow-up Follow-up data: Satisfaction, Participation, Employment, Substance and alcohol abuse, community integration||Sample|
|Sample Population||Individuals with severe burns and related conditions treated at one of the four Burn Model System (BMS) Centers.|
|Sample Size/Notes||2016: 3,757 adults (18 years of age and older) and 2,179 children (17 years of age and younger)|
|Unit of Observation||Individual|
|Geographic Coverage||From the four current BIMSC: <a href="Boston-Harvard Burn Injury Model System">Boston-Harvard Burn Injury Model System</a> Boston, MA<a href=The North Texas Burn Rehabilitation Model System">The North Texas Burn Rehabilitation Model System</a> Dallas, TX<a href="University Texas Medical Branch Shriner's Hospitals Children Galveston Burn Model System">University Texas Medical Branch Shriner's Hospitals Children Galveston Burn Model System</a> Galveston, TX<a href="Northwest Regional Burn Model System ">Northwest Regional Burn Model System </a> Seattle, WA|
|Geographic specificity||BIMSC region||Data Collection|
|Data Collection Mode||Initial intake: in-person interview Follow-up: phone/mail|
|Data Collection Frequency||Collected at the time of hospitalization or discharge, then 6 months, 1 year, and 2 years post burn injury. Beginning in 2015, data are additionally collected every 5 years post burn injury.||Strengths and limitations|
|Strengths||Comprehensive and longitudinal data of burn survivors with severe injuries, detailed information on injury, intervention, outcomes, disability, distress and community reintegration, geographic and patient diversity including large pediatric population. Includes pre- (retrospective) and post- burn information regarding life satisfaction and activity participation. Database includes measures of cardiopulmonary function, physical growth and maturation, bone density, range of motion, activities of daily living, biomarkers , as well as psychosocial adjustment measuring life satisfaction and satisfaction with appearance. Data includes both adult and pediatric cases (age at burn <16). There is also a long-term (5 and 10 year) follow-up study that includes the World Health Organization Disability Assessment Scale that collects information on difficulties due to health conditions.<p> Financial assessment data is also collected regarding rehabilitation, professional and hospital charges for various burn care and injury rehabilitation strategies.|
|Limitations||Data are not population based, as this only includes model system patients. Survey data may have recall and selection bias. Lack of follow-up data from less severely burned patients. Site or patient specific treatment/intervention information details may not be included in the BMS database. Variation in data collection may exist between different centers especially with regards to follow-up. Other burn databases include the National Burn Repository (for the U.S. and Canada) and the American Burn association patient registry.||Data details|
|Data Access Requirements||Data Use Agreement, No Cost|
|Summary Tables/reports||Profile of Adults:|
Annual Summary Report:
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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).
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