TBI Model Systems Research

National Database

The research component of National TBI Model System (TBIMS) Database and Rusk Rehabilitation TBIMS (RRTBIMS) is designed to advance the understanding of TBI and its consequences and to develop better methods of treatment. Information is collected from medical and administrative records and patient interviews, at admission and discharge from the rehabilitation units of Bellevue Hospital Center and NYU Langone Medical Center. Follow up patient interviews also take place annually. The data are used to document the medical, functional, psychological and social status of the patients, as well as their use of health and other services. RRTBIMS contributes data to the National TBI Database for analysis of pooled data from over a dozen model systems of TBI care.

Study 1 – Two Phase Approach to Improving Health Literacy and Disparities among Culturally Diverse Samples of Individuals with TBI

Racial and ethnic minorities comprise an increasingly large proportion of the U.S. population and make up the majority of residents in certain areas. Historically, people in racial/ethnic minority groups are more likely than non-Hispanic Caucasians to experience health inequalities and have limited understanding of health issues.
The first phase of this study is descriptive. We will collect data on culturally diverse patients with TBI from Bellevue Hospital who have been admitted into acute inpatient rehabilitation. Data will be collected over the five year grant cycle and will examine the patients’ race/ethnicity, acculturation, family support, trust in health care providers, and health and language literacy as related to retention in healthcare after discharge from acute inpatient rehabilitation. The second phase of the study will involve the development of the Multimedia Multicultural Educational Program for TBI (MMEPT) to provide patients with culturally-accessible knowledge about their TBI and the rehabilitation process to facilitate improved outcomes, particularly return for follow-up outpatient care.

Study 2 – Evaluating the Sensitivity and Responsiveness of the TBI-QoL CATs

This study assesses the responsiveness and sensitivity of the Traumatic Brain Injury Quality of Life Measurement System (TBI-QoL) computerized adaptive tests (CATs) in two groups of individuals with TBI: those within the first year of injury and those who are more than one year after injury. The TBI-QoL is a new comprehensive patient reported outcome system that was developed as a collaborative project within the previous cycle of the TBIMS program. It was developed in a coordinated effort with large federal initiatives from NIH (NIH Common Fund: NIH Patient Reported Outcomes Measurement Information System (PROMIS) and NINDS: Neuro-QOL) and the Department of Veterans Affairs (Rehabilitation Research & Development Program), and it is recommended as a supplemental/emerging Common Data Element (CDE) promoted by this interagency initiative.

Module Study – Evaluation and Implementation of the TBI-QoL Instrument

This research study is a collaboration between RRTBIMS, Kessler Foundation (West Orange, NJ) and TIRR Memorial Hermann (Houston, TX). The two central aims of the study are to: further establish the psychometric properties of the TBI-QOL CATs by examining their sensitivity and responsiveness to clinically meaningful changes across time and to compare the responsiveness of the TBI-QOL CATs to scores on legacy instruments already included in the TBIMS database and on anchor markers of global change to compute Minimally Important Differences.

Understanding Risk Factors Facing Patients with TBI at Bellevue Hospital

The purpose of this study is to evaluate the risk factors facing patients with TBI receiving inpatient rehabilitation at Bellevue Hospital.  The RRTBIMS was established with the intent of collecting information from a diverse population that is representative of the national Traumatic Brain Injury Model System project. Through our experiences recruiting and interviewing for the Model Systems at Bellevue Hospital, we have been struck by the many risk factors faced by this group and the overlap of patients across various marginalized demographic groupings. This study aims to examine more closely the vulnerable groups to which this patient population belongs and whether membership in multiple marginalized groups has an effect on functional outcomes detectable during inpatient rehabilitation.