The Burn Injury Model System National Longitudinal Database A Primer on Using the Database

1. The Burn Injury Model System National Longitudinal DatabaseA Primer on Using the Database Funded under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), A Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS)

2. What Is the BMS National Database? • Prospective, longitudinal, multicenter research study that examines health, functional and psychosocial outcomes following a burn for almost 4000 adults and over 2000 children. • Data is collected from individuals with moderate to severe burn injury who receive treatment at specific burn centers around the US. • Specific inclusion criteria have changed over time but currently require: • >=10% Total Body Surface Area Burned (TBSA), >=65 years of age and burn surgery for wound closure; OR • >=20% TBSA, 0-64 years of age and with burn surgery for wound closure; OR • Electrical high voltage/lightning with burn surgery for wound closure; OR • Hand burn and/or face burn and/or feet burn with burn surgery for wound closure. More details on inclusion criteria can be found at the bottom of this webpage: http://burndata.washington.edu/standard-operating-procedures

3. BMS Centers • Burn centers that currently contribute data to the BMS Database • Boston-Harvard Burn Injury Model System • University of Texas Medical Branch/Shriners Burn Injury Model • North Texas Burn Rehabilitation Model System at UTSW, Dallas • Northwest Regional Burn Model System at UW, Seattle • Burn centers that previously contributed data to the BMS Database • Johns Hopkins Burn Model System Center • University of Colorado Denver Burn Model System Center

4. BMS National Data and Statistical Center • The BMS National Data and Statistical Center is funded to help the burn centers collect and store the data in the database. • The National Data and Statistical Center cleans and scores the data and provides the data in a usable format to researchers. • The National Data and Statistical Center is currently located at the University of Washington, Seattle • The National Data and Statistical Center is your resource for help if you have questions about the database or other BMS questions. • You can email the National Data and Statistical Center at burndata@uw.edu

5. Data Included in the BMS Database • Patient Demographics (age, sex) • Pre-injury history (military service, health, and employment) • Causes and Injury Characteristics (total body surface area burned and grafted, inhalation and other injuries, burn location, circumstances and place of injury) • Treatment (length of hospital stay, ventilator days, burn-related surgeries, therapy use) • Hospital Discharge (hospital disposition, primary sponsor of care) • Symptoms, problems (pain, itch, and sleep) • Functional outcomes (depression, PTSD, physical function, community integration) • Employment / School status after burn injury • Patient Reported Outcome Metrics (VR-12; PROMIS)

6. When Data is Collected • The BMS tries to collect data at all of the below listed timepoints from each participant. • When using a wide dataset format (which you indicate at the time of the data request), variables collected at multiple timepoints will be marked with numbers at the end (e.g. “_1”, see below) to indicate which timepoint they were collected. • Discharge from acute burn injury (variable) • 6 months (±2 months) after injury (variable_1) • 12 months (±3 months) after injury (variable_2) • 24 months (±6 months) after injury (variable_3) • And every 5 years (±1 year) after injury (this longer term follow-up initiative began in 2012) (variable_5, variable_10, variable_15, etc.) Note: Some data is collected even if it is outside the follow-up window. Variables can be tagged if requested to determine if data was collected within or outside of the window.

7. BMS Database Participants

8. Data Dictionary • The data dictionary is your best friend. Take some time getting familiar with it before you use the data. It contains lots of information about each variable included in the dataset (such as how it is coded and its history). A detailed description of each column is given later in this presentation.

9. Types of Data • Self-Report: Some data is collected by doing paper or in-person interviews with participants. • Medical Record Review: Some data is collected through review of the medical record by BMS center staff. NOTE: There are a significant number of people who have medical record data but not self-report data, especially at later timepoints. Keep in mind that by using self-report data in your analyses you may be significantly reducing your sample size.

10. Changes To Variables Over Time • The data collected by the BMS has changed over time. Pay close attention to the dates the variables you are interested in were collected. Sample size is severely limited for some variables, especially those recently added to the database. The start and stop date columns in the data dictionary will show you this information

11. Timeline of Adult Measures Administered by the BMS

12. Timeline of Pediatric Measures Administered by the BMS

13. Baseline and Follow-up Surveys • There is a baseline survey and a follow-up survey. Different data is collected at baseline and follow-up timepoints. • To see copies of the two different surveys you can also look at the BMS Survey Codebooks The Data Dictionary indicates what timepoint variables were administered. NOTE: Form I is baseline and Form II is follow-up. See upper right corner of pages in codebook.

14. Detailed Look at Variables in Data Dictionary • The remaining slides in this presentation will go through the different columns in the data dictionary in more detail. • This detailed look will help you understand exactly what information is in the data dictionary and how it is helpful when doing analyses with the BMS data. • Again, if you ever have any questions please email the BMS National Data and Statistical Center at burndata@uw.edu and we will be happy to assist you.

15. Detailed Look at Data Dictionary: Variable/Field Name and Status Variable/Field Name: This is the name of the variable in the actual dataset. Remember that sometimes a variable will have a _1, _2, etc. suffix included in addition to the variable name in the data dictionary because it is collected at multiple timepoints. Status: This tells you if this variable is still being collected by the BMS (active) or if it was collected in the past but is not currently (archived).

16. Detailed Look at Data Dictionary: Description and Age group Description: This tells you more detail about the variable and what it is. If the variable is from a standardized measure (e.g. PROMIS Anger Short Form) you will find that information here, including the item number from the measure. Age group administered to: This is where you find information on if the variable was administered to adults, children, or to an adult on behalf of a child (proxy).

17. Detailed Look at Data Dictionary: Question/Field Label and Coding Question/Field Label: This is what the actual wording of the question is (i.e. the actual question asked to the burn participant either verbally or in written form). Coding: This is the actual response options given to the participant and how they are coded in the dataset. For example, a “5” in the dataset on the question shown about activities with friends means the participant answered “Never” on that question.

18. Detailed Look at Data Dictionary: Time-point Administered and Operational Definition Time-point Administered: This indicates if the variable is/was collected at discharge or follow-up or both. Operational Definition: This indicates if this is a variable that is created by the data center such as when a score is generated for a measure that consists of multiple items.

19. Detailed Look at Data Dictionary: History and Start/Stop Dates Start/Stop Dates: As discussed previously this shows the dates a variable was/is collected. History: This field has more detail about changes made to the variable over time or when it might have been added or why. For example, additional response options were added to the shown variable at later timepoints.

20. Detailed Look at Data Dictionary: Scoring Information and Comments Scoring Information: This field tells you if the variable is generated by the data center by scoring sets of item or recoding items (e.g. total score of a measure such as PROMIS Pain Interference). Comments : This variable sometimes tells you what the range of scores is for variables generated by the data center or how to interpret them. Other times this variable has information about why or when a variable was added or removed.