The Brain Injury Research Center (BIRC) brings together world-renowned investigators to study the complicated facets of recovery from brain injury. BIRC has leveraged resources from multiple federal funding sources, including the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) and the National Institutes of Health, to conduct research on predictors of cognitive, emotional, behavioral and participation (productivity and social relationship) outcomes after traumatic brain injury (TBI), and on interventions to improve these outcomes.
TIRR Memorial Hermann has been funded as a Traumatic Brain Injury Model Systems (TBIMS) Center for six five-year cycles, with the most recent cycle beginning in September 2022 and running through August 2027. Over the years, BIRC has contributed to research and to clinical practice by disseminating results from studies on topics of importance to individuals with TBI and their caregivers. Topics that have been addressed include social communication, sexual health, emotional distress, learning/memory and assessment of caregiver outcomes. Investigators at BIRC have developed a classification system for symptoms and facilitators/barriers to participation after TBI and have completed randomized controlled trials of pharmacologic and memory strategy training interventions for memory impairment and psychotherapy and symptom monitoring for reducing emotional distress. Recently funded ongoing studies include use of mobile health applications to facilitate symptom tracking and self-management in individuals with TBI to improve physical and mental health outcomes.
TIRR Memorial Hermann / Baylor College of Medicine / UTHealth Houston Collaborative TRAUMATIC BRAIN INJURY MODEL SYSTEMS Funding Source: National Institute on Disability, Independent Living and Rehabilitation Research
Project Director: Angelle Sander, PhD, FACRM
Project Co-Director: Shannon Juengst, PhD CRC
Director of Dissemination and Cultural Humility: Monique Pappadis, PhD
Medical Director: Cindy Ivanhoe, MD
The overall purpose of this grant is to enroll persons with TBI in a national database. This database is the first ever prospective, multicenter, longitudinal study that examines the course of recovery and outcomes following the delivery of a coordinated system of acute neurotrauma care and inpatient rehabilitation. The TBIMS was established in 1987, and TIRR Memorial Hermann was one of the original five centers funded. Currently, TIRR Memorial Hermann is one of 16 TBIMS centers funded from 2022 to 2027. The purpose of the database is to collect information on the course of TBI through the continuum of care, including acute trauma care, comprehensive inpatient rehabilitation, post-acute rehabilitation and long-term outcomes. The database can serve as a resource for investigators at other Model System Centers, as well as persons collaborating with them.
In addition to contributing to the overall Traumatic Brain Injury Model Systems (TBIMS) goal of understanding and improving longitudinal outcomes for individuals with traumatic brain injury (TBI), our TBI Model Systems has the following overall goals:
Local research project: Symptom Trajectories and Evolution of Mental Health Conditions Over the First-Year Post-Injury: A Mobile Health Application (PI: Shannon Juengst)
This study will track temporal patterns of everyday neurobehavioral symptoms (emotions, fatigue, cognitive challenges, substance use) that often develop into mental health conditions across the first year after TBI and determine patterns in these symptoms that predict a diagnosis of depression or anxiety at one year post-injury. Tracking is conducted via a mobile health platform developed specifically with and for persons with TBI, allowing for collection of data on emotional and behavioral symptoms in everyday life. Having a record of repeated assessments of emotional and behavioral functioning in their daily lives can help persons with TBI to track mental health and to seek help as needed. The use of mobile app technology, with ability to capture symptoms in real time rather than retrospectively, and in a person’s day-to-day environment could provide more accurate diagnosis based on frequency and duration of symptoms.
Collaborative module project: Multidimensional health perceptions profiles for personalizing patient-provider communication (PI: Shannon Juengst)
This study will validate a measure of health perceptions for persons with TBI. This measure—the Multidimensional Health Perceptions Questionnaire (MHPQ)—was developed and validated in a general population, with both English and Spanish speakers, using patient-centered outcomes techniques. It captures several areas considered to be important social determinants of health, including anticipated discrimination, spiritual health beliefs, beliefs about social and emotional well-being, trust in health care providers, health self-efficacy and perceived health literacy. Our study aims to validate this measure for diverse persons with TBI and to conduct latent profile analysis to determine profiles of individuals regarding these important health perceptions that may contribute to effectiveness of communications between persons with TBI and their health care providers. We will also explore the relationship between health perceptions and participation outcomes after TBI. This project has the potential to improve communication between persons with TBI and their health care providers. Providers could use these health perceptions profile as a basis for tailoring their recommendations and instructions to the individual health beliefs and perceptions of their patients and clients. Our TBIMS has a specific dissemination plan to present effective and usable information to our target audiences, including individuals with TBI, their care partners and their health care professionals. Our expertise with dissemination to culturally diverse audiences, including Spanish speakers, will facilitate uptake and implementation across traditionally underserved racial and ethnic minority groups.
Impact of Chronic Pain on Outcomes Following Traumatic Brain Injury
Funding Source: National Institute on Disability, Independent Living and Rehabilitation Research
Co-Principal Investigator: Angelle Sander, PhD (Principal Investigator: Michael Williams, PhD—University of Houston)
This project examines the extent to which chronic pain influences outcomes (e.g., functional independence, societal participation and life satisfaction) following traumatic brain injury (TBI). This study gathers consumer perspective on pain treatment and interest in non-pharmacological interventions to inform development of a novel behavioral intervention for those with comorbid chronic pain and TBI. The goal of this project is to improve the health and functioning of persons with comorbid TBI and chronic pain, increasing their chances of achieving personally relevant independent living, employment and community participation goals. The objectives are: (1) to examine the relationship of pain severity with functional independence, societal participation and life satisfaction in persons with TBI and chronic pain; (2) to determine the contribution of pain severity to the relationship between neurocognitive functioning and outcomes post-TBI in persons with comorbid chronic pain; and (3) to explore the perspectives of persons with comorbid TBI and chronic pain regarding their current pain management plan and their interest in non-pharmacological pain interventions to identify recurrent themes and guide tailored intervention development for this subgroup. Project outcomes include: (1) comprehensive knowledge regarding the impact of chronic pain on outcomes post-TBI, an understudied area; and (2) key information from consumers regarding interest in non-pharmacological interventions to inform future intervention research to enhance pain management and reduce negative impact of pain on independence, participation and life satisfaction.
iManage-Sexual Wellness: Development of a symptom-monitoring/self-management program to improve sexual wellness after SCI and TBI
Funding Source: National Institute on Disability, Independent Living and Rehabilitation Research
TIRR Memorial Hermann site Co-Principal Investigators: Angelle Sander, PhD, and Heather Taylor, PhD (Principal Investigator: David Tulsky, PhD—University of Delaware)
This project develops new assessment item banks to measure sexual functioning in individuals with spinal cord injury (SCI) and traumatic brain injury (TBI) and then develops iManage-Sexual Wellness, a web-based symptom-monitoring/self-management system to allow individuals with SCI or TBI to monitor their sexual functioning and learn strategies to improve sexual wellness from their home. Sexual wellness, including the ability to participate in sexual activities, experience quality intimate relationships, identify as a sexual being and experience full societal participation is a key dimension of recovery after traumatic injury. However, many individuals with SCI and/or TBI experience a significant post-injury reduction in sexual wellness. Unfortunately, psychometric outcome measures of sexual wellness after SCI or TBI and empirically supported intervention strategies are lacking. These new item banks measuring sexual wellness are to become part of the SCI-QOL and TBI-QOL measurement systems and be set up as monitoring tools. Additionally, this project develops animated videos depicting strategies for improving sexual wellness that target individuals with SCI or TBI that are administered via a web-based self-management system. The iManage-Sexual Wellness platform allows individuals with SCI or TBI to complete the appropriate Sexual Wellness item bank, and based on the score, specific videos are selected that should be helpful for any problems the individual is having. A unique feature is that the new item banks (or monitoring tools) “trigger” the specific video that is then projected to guide the self-management intervention. Project deliverables include the new Sexual Wellness Item Banks (that will be integrated into the SCI-QOL or TBI-QOL measurement system), animated videos that provide ways to improve sexual wellness and the web-based self-management platform (iManage-Sexual Wellness), which integrates the new item banks and includes the computer trigger logic for administration of the ideal video for each individual. The iManage-Sexual Wellness application should improve overall sexual wellness and quality of life.
BeHealthy: Chronic Disease Management for TBI
Funding Source: National Institute on Disability, Independent Living and Rehabilitation Research
TIRR site Co-Investigator: Angelle Sander, PhD (Principal Investigator: Flora Hammond, MD—Indiana University Medical School)
This project leverages the resources of the traumatic brain injury (TBI) Model Systems and partners with experts in collaborative care, self-management, policy and consumer advocacy to develop a chronic disease management model for TBI. Growing evidence demonstrates brain injury can be a chronic, dynamic health condition with persistent health and psychosocial issues. Identifying chronic brain injury is essential for managing associated life-long conditions due to injury, and to improve health, independent function and societal participation for individuals with TBI. “BeHEALTHY” aims to produce new knowledge to address evidence gaps in the management of brain injury as a chronic condition. The model—designed for people with TBI, their caregivers and health providers—is developed based on foundational knowledge (i.e., systematic literature review) and refined through feasibility testing (approximately 12 studies). Research outcomes are decreased mortality and improved health, function and quality of life for people with TBI through (1) prevention and/or reduction in the rates of new onset co-morbid disease and disability after TBI; (2) extended rehabilitation services that better integrate with community-based supports; and (3) creation of evidence-based recommendations for healthy longevity. Project dissemination targets individuals with TBI and their families, providers, researchers, payers, policy makers and community-based agencies and includes procedure manuals, presentations, publications, technical reports, policy briefs and grant proposals. Dr. Sander is leading the self-management track for this project.
Improving Outcomes for Care Partners of Persons with Traumatic Brain Injury
Funding Source: National Institutes of Health/National Institute on Nursing Research
TIRR Memorial Hermann site Principal Investigator: Angelle Sander, PhD (Principal Investigator: Noelle Carlozzi, PhD—University of Michigan)
Care partners of persons with moderate to severe traumatic brain injury (TBI) are often required to assume a caregiver role, bearing primary responsibility for assisting the person with TBI in physical, mental, financial and leisure activities. As a result of these new caregiving responsibilities, it is common for these care partners to report problems with physical, mental and social health, as well as compromised health-related quality of life (HRQOL). Given that care partners’ well-being and functioning affects both their own personal health outcomes, as well as the functional and rehabilitation outcomes of the person with TBI, there is a critical need to develop novel health management interventions to ensure better health outcomes for both members of the TBI care partnership dyad. Therefore, our long-term goal is to improve the health and well-being of these care partners, as well as their ability to provide care to their loved one. Thus, the proposed randomized control trial will examine the efficacy of a just-in-time adaptive intervention (JITAI), or personalized self-management intervention that uses objective mobile sensor data feedback to improve physical activity, sleep and HRQOL in 240 care partners of persons with TBI.
Our primary objectives are to 1) assess the efficacy of this novel personalized self-management intervention (i.e., JITAI) for preventing the development of adverse symptoms (e.g., mobility, sleep, poor HRQOL); and 2) use data collected from wearables (e.g., the Fitbit Charge) and real-time assessments of HRQOL to identify care partners with the greatest risk for negative physical and mental HRQOL outcomes, as well as the timing for when they are at greatest risk. We expect care partners that are randomized to receive the JITAI will demonstrate improvements in HRQOL, physical activity and sleep relative to controls. We also hypothesize that objective, data-derived mobile phenotypes can predict risk for adverse caregiver HRQOL. The scientific premise for the proposed research is based on our multidisciplinary team with expertise in caregiver research, evaluation of HRQOL using patient-reported outcomes, clinical trials implementation, expertise in real time assessment of HRQOL, as well as the statistical expertise in high-dimensional statistics and machine learning. Furthermore, the innovation is grounded in the examination of a real-time, real-world, personalized and scalable JITAI designed to improve HRQOL in care partners. Ultimately, this study will allow us to identify care partners at the greatest risk for negative physical and mental health outcomes and will provide important efficacy data to support the clinical utility of a low-cost, low-burden self-management intervention to improve HRQOL for care partners of persons with TBI.
CARE4TBI
Funding Source: National Institutes of Health/National Institute on Neurological Diseases and Stroke
TIRR Memorial Hermann site Co-Principal Investigators: Angelle Sander, PhD, and Shannon Juengst, PhD (Principal Investigator: Jenny Bogner, PhD—Ohio State University)
CARE4TBI project is a pragmatic, stakeholder-driven observational study that aims to 1) standardize electronic medical record (EMR) documentation of rehabilitation therapy to allow extraction for research and operations; 2) compare the effectiveness of well-defined rehabilitation approaches to improve community participation and functional independence of patients with TBI; and 3) identify patient, provider, setting and post-discharge factors that modify the effect of therapy on key outcomes. TIRR Memorial Hermann therapy staff, therapy administration and IT staff are collaborating with Drs. Sander and Juengst to carry out the study at TIRR Memorial Hermann and all are part of a larger team of 16 TBI Model Systems Center staff collaborating on this novel effort.
Self-Management of Hypertension and Diabetes in Persons with Traumatic Brain Injury
Funding Source: Memorial Hermann Foundation
Principal Investigator: Angelle Sander, PhD
Co-Investigators: Shannon Juengst, PhD, Monique Pappadis, PhD
Traumatic brain injury (TBI) has chronic effects on health and functioning across the lifespan. Unfortunately, persons with TBI often have other chronic health conditions, including hypertension and diabetes. These conditions alone are associated with negative impacts on cognition, participation and quality of life. Control of these conditions is crucial for promoting maximum recovery from TBI and for improving health and function throughout the lifespan; however, little is known about the specific adaptations needed to help persons with TBI to manage these conditions. The purpose of this pilot project is two-fold: (1) to provide preliminary data on barriers to self-management of hypertension and/or diabetes in persons with TBI; and (2) to test the feasibility of collecting data, in the natural environment, of self-management of hypertension and/or diabetes in persons with TBI, including monitoring of blood pressure and blood glucose, food intake and exercise. The project will employ a sequential exploratory mixed-methods design. Qualitative interviews will be conducted to explore TBI-related barriers to self-management of hypertension and/or diabetes in a sample of 10 participants with TBI and one or both of these chronic conditions, which often co-occur. The quantitative phase will use ecological momentary assessment (EMA) to track self-management behaviors in the 10 participants for six weeks, in their natural setting. Barriers to self-management that emerged during the qualitative phase of the study will be integrated into the EMA assessment in order to track their occurrence in a natural setting.
Long-term Trajectories of Cognition and Psychological Health in Civilians and Veterans: Understanding Risk to Inform Targeted Prevention and Personalized Interventions
Funding Source: Memorial Hermann Foundation and Department of Defense
TIRR Memorial Hermann site Principal Investigator: Shannon Juengst, PhD (Principal Investigator: Kristen Dams-O’Connor, PhD—Mount Sinai)
Depression is among the most common health comorbidities of TBI, affecting up to 77% of survivors. Suicidal ideation and behaviors are also far too common among populations with TBI, occurring in roughly one in 10 individuals with TBI. Persons with a history of TBI have an 8% lifetime rate of suicide attempts compared to a 2% rate in the general population; rates of death by suicide among those with history of TBI are 2.7 to 4.0 times higher. The purpose of this study is to understand pathways of improvement and decline after TBI and to collect new data—to pair with existing data from the TBI Model Systems Study—to identify factors associated with cognitive decline and suicide. This data will be part of a multi-center study focused on understanding cognition and psychological health after TBI. This study and this data will help to inform intervention time points and targets to improve psychological health after TBI and potentially avoid serious adverse consequences such as suicidal ideation and attempt.
Problem Solving Training (PST) for English-and Spanish-speaking Care Partners of Adults with Alzheimer's disease and Alzheimer’s disease-related Dementia (CaDeS Trial)
Funding Source: Texas Alzheimer’s Research and Care Consortium
Principal Investigator: Shannon Juengst, PhD
Care partners of individuals with neurological conditions, such as traumatic brain injury (TBI) and Alzheimer’s disease and related dementia (AD/ADRD), rarely get the preparation or training they need to manage their caregiving responsibilities and to successfully balance their own self-care and their caregiving roles. As a result, they often experience caregiver burden and emotional distress and engage in maladaptive coping behaviors. Therefore, there is a critical need to support the emotional and social functioning of care partners to improve their health and well-being and to prevent caregiver burden and poor coping. Problem-solving training (PST) can reduce depressive symptoms and improve coping skills; however, critical gaps in knowledge and care remain regarding the necessary components of training (e.g., “active ingredients”): we still do not know how many sessions are necessary or whether care partners need “booster” sessions to maintain the benefits of PST. We also do not understand how personal factors, such as age, gender, etc., affect how effective PST is for individual care partners. Finally, caregiver interventions have almost exclusively been tested in English-speaking care partners, contributing to existing health disparities. To address these critical gaps, we are delivering PST to care partners of adults with AD/ADRD, comparing three-session versus six-session PST, both with and without monthly boosters for six months, to see which combination is optimal for improving emotional symptoms and caregiver burden, enabling them to navigate the adjustment and challenges they experience as caregivers.