As people with moderate to severe traumatic brain injury (TBI) live longer, experts are just beginning to understand their unique needs and challenges. At Rusk Rehabilitation, grant-funded new research into long-term outcomes associated with TBI is centered on improving care for patients from diverse backgrounds—particularly those in traditionally underserved communities.

The project’s grant was awarded through the Traumatic Brain Injury Model Systems (TBIMS) program, an initiative of the federal government designed to foster innovative projects and research on brain injury. This marks the second time that the research team from Rusk, one of just 16 designated TBIMS centers nationwide, has received the prestigious 5-year award.

“Increasingly, TBI is recognized as a chronic condition, but we’re still learning what that means in terms of the aging brain—how it impacts individuals as they move into their 50s, 60s, 70s, and beyond,” says Tamara Bushnik, PhD, FACRM, associate professor of rehabilitation medicine and director of inter-hospital research and knowledge translation. “Our goals are to answer these questions and use what we learn to improve quality-of-life and function for these patients.”

Understanding how these results can be applied specifically to culturally diverse populations—who are often economically disadvantaged and medically underserved—is key to the Rusk TBIMS program.

“This initiative will leverage the complex picture of people we see throughout the different boroughs and neighborhoods of New York City,” says Dr. Bushnik. “For instance, NYU Langone Hospital—Brooklyn, which serves a community with very large Asian and Russian populations, is a Level I trauma center that sees quite a few individuals with traumatic brain injury.”

Reaching Out to the Community

During the first phase of the initiative, Rusk will gather input from the community through a series of focus groups and in-depth interviews, documenting the experiences of both patients and caregivers in the New York City area. The goal is to determine the specific medical and psychological comorbidities of individuals with chronic TBI—and the specific challenges family members face as they provide long-term support. As part of this effort, the team will explore how knowledge, attitudes, and experiences of TBI may differ across various racial and cultural groups.

Outreach efforts will also focus on community organizations and healthcare providers soliciting input from a community advisory board composed of clinical stakeholders, including primary care physicians. “Our entire effort recognizes that these healthcare providers are the ‘boots on the ground’ with the potential to make a huge difference for our communities’ families dealing with chronic TBI,” notes Dr. Bushnik.

TBI Tools for the Care Team

Based on the findings of the initial grassroots outreach, Rusk will develop a tool kit of resources to help patients, caregivers, and clinicians addressing the challenges of chronic TBI.

“The tool kit’s components will be driven by what we determine the community needs,” says Dr. Bushnik. “For patients and caregivers, we expect to provide educational materials that deliver relevant information about aging with TBI in a culturally sensitive way.” For example, the tool kit will likely build on Rusk’s earlier efforts to develop TBI educational videos in multiple languages.

The tool kit will also provide resources for primary care providers, including specific measures to assess and track chronic brain injury. “First, we want to raise awareness among healthcare providers about chronic TBI,” says Dr. Bushnik. “We also want to provide physicians with guidance on how to assess patients for chronic brain injury and manage their condition long term.”

Finding More Answers

As part of the TBIMS grant, Rusk is required to enroll at least 50 patients per year in the program’s national database, which tracks longitudinal information on TBI patients at 1, 2, and 5 years post-injury, and every 5 years afterwards.

“The database has followed the natural history of recovery following traumatic brain injury since 1989,” explains Dr. Bushnik, “so we are now at the point where we have data from people who are 30 years post-TBI.”

She believes that Rusk’s research on chronic TBI among diverse populations will complement the insights coming out of the TBIMS database.

“Both ask important questions about chronic TBI: How do aging and TBI interact, and how can we overcome cultural and economic barriers in caring for these aging patients?” notes Dr. Bushnik. “These are things we can now start looking at—and it’s incredibly important that we find the answers.”