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Center for Large Data Research & Data Sharing in Rehabilitation

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. The BMS project is funded by the National Institute on Disability and Rehabilitation Research (NIDRR), Office of Special Education and Rehabilitative Services (OSERS), U.S. Department of Education.
Key Terms Burn, NIDDR, Model System, Rehabilitation, Outcomes
Study Design Longitudinal
Data Type(s) Clinical & Survey
Sponsoring Agency/Entity National Institute on Disability and Rehabilitation Research (NIDRR), Office of Special Education and Rehabilitative Services, U.S. Department of Education
Health conditions/Disability measures
Health condition(s) All (related to Burn injury) including: Skin problems, Scaring, Burn coverage, Skin grafts, Inhalation injury
Disability Measures Physical Component Summary Measure (PCS), Hand and foot functioning, Mental Component Summary Measure (MCS) Range of motion deficits, Amputation, Scarring, Functional Limitations, Pain, Inhalation injury
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 & Severity of Burn: Burn demographics, Parts of body burned, Burn injury characteristics, Burn complications, Respiratory problems Treatments: Graft information, Pressure garment information, Physical therapy & 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 & 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 2011: 4,907 enrolled and consented for follow up. 2007: at the time of discharge: 3,255, after 6 months of followup: 2,054, after 1 year : 1,741, and after 2 years of followup: 1,347
Unit of Observation Individual
Geographic Coverage From current 4 BIMSC: Johns Hopkins University Burn Injury Rehabilitation Model System, Baltimore, MD North Texas Burn Rehabilitation Model System, Dallas, TX University of Texas Medical Branch, Galveston, TX University of Washington Burn Injury Rehabilitation Model System, Seattle, WA
Geographic specificity BIMSC region
Data Collection
Data Collection Mode Initial intake: in person interview. Follow-up: phone/mail
Years Collected 1994 to present
Data Collection Frequency Collected at the time of hospitalization or discharge, than 6, 12, and 24 months post burn injury. There is also a separate collaborative study designed to collect long term followup data at 5 and 10 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) followup 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 is not population based, 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 followup. Other burn data bases include the National Burn Repository (for US and Canada) and American Burn association patient registry.
Data details
Primary Website http://bms-dcc.ucdenver.edu/
Data Access http://bms-dcc.ucdenver.edu/index.php?option=com_content&view=article&id=62&Itemid=97
Data Access Requirements Data Use Agreement, No Cost
Summary Tables/reports BMS data directory: http://bms-dcc.ucdenver.edu/images/docs/dict_18.1_w_appendix.pdf
Dataset components (where applicable) NA
Selected papers
Technical Data dictionary: http://bms-dcc.ucdenver.edu/images/docs/dict_18.1_w_appendix.pdf
Other Papers Model Systems Knowledge Translation Center BMS publication list:

http://www.msktc.org/publications?sys=B

Matthew K, et al. The National Institute on Disability and Rehabilitation Research Burn Model System Database: A Tool for the Multicenter Study of the Outcome of Burn Injury. Journal of Burn Care & Research. 2007, 28(1) 84-96.
http://www.ncbi.nlm.nih.gov/pubmed/17211206

Lezotte DC, Hills RA, Heltshe SL, Holavanahalli RK, Fauerbach JA, Blakeney P, Klein MB, Engrav LH. Assets and liabilities of the Burn Model System data model: a comparison with the National Burn Registry Archives of Physical Medicine and Rehabilitation 88, Issue 12, Supplement 2, 2007.
http://www.sciencedirect.com/science/article/pii/S0003999307015626



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