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Rehabilitation Dataset Directory: Dataset Profile

Dataset: Burn Injury Model Systems (BMS)

Basic Information
Dataset Full Name Burn Injury Model Systems
Dataset Acronym BMS
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
Study Design Longitudinal
Data Type(s) Clinical
Survey
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
Health Condition(s)

Adult: Anxiety disorders, Body mass index (BMI)/obesity, Burns, Chronic pain, Depression, ICD-9/10 diagnostic codes, Missing limbs/hand/finger/feet, Post traumatic stress disorder (PTSD), Pulmonary disorders

Pediatric: Anxiety disorders, Body mass index (BMI)/ obesity, Burns, Chronic pain, Congenital conditions, Depression, Diabetes, Epilepsy or seizure disorder, ICD-9/10 diagnostic codes, Missing limb/hand/finger/feet, Post traumatic stress disorder (PTSD), Pulmonary disorders 
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
Continent(s) North America
Countries

United States
Geographic Coverage

From the four current BIMSC:

Geographic Specificity BIMSC region
Data Collection
Data Collection Mode

Initial intake: in-person interview

Follow-up: phone/mail
Years Collected 1994-present
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.

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
Primary Website http://burndata.washington.edu/
Data Access http://burndata.washington.edu/sites/burndata/files/files/MSKTC_SOP_Factsheet_Access%20BMS%20Database%203%2025%2014%20508.pdf
Data Access Requirements Data Use Agreement, No Cost
Summary Tables/Reports

Profile of Adults:
http://burndata.washington.edu/sites/burndata/files/files/Burn_Facts_Figures_Adults_2017.pdf


Profile of Children:
http://burndata.washington.edu/sites/burndata/files/files/Burn_Facts_Figures_2017_Kids.pdf


Burn Model System Summary Report:

https://burndata.washington.edu/sites/burndata/files/files/2020BMS_Annual_Report(1).pdf 
Data Components NA
Similar/Related Dataset(s)

Other Model Systems data:

Spinal Cord Injury Model System (SCIMS)

Traumatic Brain Injury Model Systems National Database (TBIMS)
Selected Papers
Other Papers

Model Systems Knowledge Translation Center BMS publication list:
http://www.msktc.org/publications?sys=B


Technical

Variable overview:

https://burndata.washington.edu/sites/burndata/files/files/Overview-Current-Past-BMS-Variables(1).pdf 


Data dictionaries and codebook: 

https://burndata.washington.edu/sites/backdoor.burndata/files/files/BurnModelSystem_CurrentDataDictionary_January2020.xlsx 
Related Repositories
Repositories

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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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Acknowledgements: This tool was developed through the efforts of William Erickson and Arun Karpur, and web designers Jason Criss and Jeff Trondsen at Cornell University. Many thanks to graduate students Kyoung Jo Oh and Yeong Joon Yoon who developed much of the content used in this tool.

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