National Data and Statistical Center

The Institute for Rehabilitation and Research (TIRR Memorial Hermann)

Traumatic brain injury (TBI) is a frequent cause of disability and decreased participation that is associated with substantial societal costs and personal distress. While physical and cognitive impairments may be most prominent early after TBI, impairments of social communication, emotional regulation, and self-awareness are most salient in the post-acute period, and can have a devastating impact on social and family relationships, resulting in decreased quality of life for the person with TBI, family, and close others. Based on input from consumers, decreases in social functioning and integration after TBI are perceived as most crucial for them and are perceived to have received minimal emphasis in clinical and research endeavors. The Texas TBI Model System of TIRR will conduct a program of research, dissemination activities, and clinical care designed to address social relationships and to improve outcomes for persons with TBI.

Our research activities will include: (1) contributions to the TBI Model Systems National Database, (2) a collaborative, multi-center, research module project on sexuality after TBI, and (3) a local project on social communication difficulties after TBI. Our center will contribute 60 cases annually to the longitudinal TBI Model Systems database, far exceeding the minimum contribution of 35 cases per year. We will implement procedures that will ensure accurate data collection with a low number of missing values and high follow-up rates. Our collaborative project on sexuality will enroll the largest ever sample for determining the frequency, type, and severity of changes in sexual functioning after TBI. As part of this project, we will conduct the first randomized, clinical trial of an intervention to increase satisfaction with sexual functioning and comfort level in discussing sexual issues for persons with TBI and their partners. Our local project on social communication will conduct a randomized clinical trial of an intervention to improve social communication skills and social integration for persons with TBI, with the largest sample size of any similar study and one of only two randomized controlled trials conducted in this area for over 20 years.

Our center will conduct a program of dissemination activities designed to reach healthcare providers, persons with TBI, family/close others, and other consumers. We will present findings at local, regional, and national meeting and publish articles in scholarly journals. We will disseminate information in a wide range of venues using a wide variety of formats to ensure that information is accessible to all, including persons with disabilities.

We will collaborate with trauma centers at Memorial Hermann and Ben Taub hospitals, the clinical teams at TIRR and Quentin Mease rehabilitation hospitals, and the staff providing post-acute community integration services at the TIRR Challenge Program to ensure that a comprehensive, multidisciplinary, system of rehabilitation care is provided to persons with TBI enrolled in our projects. We will seek input to our projects from the clinical rehabilitation teams.

Our identification of research questions to be addressed, research design, and dissemination activities were informed by input from persons with TBI and family members/close others of persons with TBI. Our center will have ongoing processes to seek additional consumer input in design, implementation, and evaluation of our activities, outputs, and outcomes. Outputs including peer reviewed articles, presentations, consumer brochures, and website content will lead to the short-term goals of improved understanding of sexuality and social communication after TBI and, eventually, to intermediate and long-term goals of improved sexual and communication functioning and better quality of life for persons with TBI and their families/close others.