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Perspectives on Addressing Unmet Research Needs in Postacute TBI Care for Older Adults

The third session of the workshop focused on the period after a patient transitions out of acute care. It explored unaddressed challenges for caregivers of geriatric traumatic brain injury (TBI) patients, approaches to integrating patient priorities and outcome goals into clinical decision making, research gaps regarding bio-psycho-socio-ecological factors that affect recovery outcomes, postacute care access, quality, and continuity, and increased risk of subsequent neurologic and vascular disorders.

QUALITATIVE RESEARCH ON CAREGIVER PERSPECTIVES IN GERIATRIC TBI

Michele Nelson, University of California, San Francisco, described the experiences and needs common among caregivers of older adults with TBI and discussed approaches to addressing unmet needs. Limited available evidence suggests that caregivers experience emotional effects and challenges in adapting to the physical, cognitive, and behavioral changes in their loved ones and to their new role as caregivers. Through her research with the Transforming Clinical Research and Clinical Knowledge in Geriatric Traumatic Brain Injury (TRACK-GERI) study, Nelson is working to expand research on TBI caregiver experiences (Nelson et al., 2024). In her interviews with caregivers, many highlighted the need for resources and support in decision making and navigating follow-up care, including assistance with follow-up care coordination (e.g., online tasks, phone calls), help in navigating systems across the care continuum, better access to organized

TBI-specific resources, and opportunities to take part in caregiver support groups. Acknowledging that most study participants were white and higher resourced, she emphasized the importance of understanding the needs and experiences of a varied caregiver population.

Nelson called for additional research on older adults with TBI and their caregivers, including participatory action research that actively involves TBI patients and caregivers, studies on quality of life, and interventional studies focused on enhancing health outcomes after TBI, integrating technology-based supports, and understanding health care utilization. Strategies to prevent patient decline and reduce caregiver burden are needed to improve policy and practice for this population, said Nelson. Insights from research on caregivers of patients with Alzheimer’s disease could be used, she suggested, and partnerships among health care providers, policy makers, technology companies, and health support organizations can contribute to addressing identified gaps.

CARE MODELS FOR INTEGRATING PATIENT-CENTERED AND PERSONALIZED GOALS IN RECOVERY

Mary Tinetti, Yale University, described models for integrating patient-centered and personalized goals in recovery after TBI, emphasizing the importance of considering the patient’s individualized goals, functioning, and life circumstances in decision making. She noted that a significant percent of older adults with TBI have multiple preinjury conditions. A focus on disease-specific outcomes may not align with patient priorities, and interventions for multiple conditions may create a treatment burden, in which adherence to numerous recommendations may cause harm and negatively affect a patient’s quality of life. Patients, their caregivers, and involved health professionals should identify outcomes that are applicable across all conditions, rather than TBI specific, and use interventions that target those outcomes, said Tinetti. For instance, a patient may have the goal of being able to babysit a grandchild. Specific, measurable, actionable, realistic, and time-bound (SMART) goals aligned with patient priorities guide intervention selection and measurement of associated progress, Tinetti explained. Thus, patient-focused care after TBI considers the medical, functional, socioeconomic, and environmental factors that impede patient goals and prioritizes medical, rehabilitative, palliative, and/or community interventions that address these individualized factors, she said.

Research indicates that older adults with and without cognitive impairment and their caregivers can identify SMART goals, said Tinetti (Vu et al., 2023). Her research demonstrates that care guided by the patient’s goals (1) decreases perceived treatment burden, (2) reduces unwanted interventions and increases desired care, (3) discontinues unwanted prescription

medications with no negative outcomes, and (4) creates a modest increase in healthy days at home (Tinetti et al., 2019, 2024). Health professionals can incorporate these SMART goals in decision making, workflow, and electronic health records. She noted that the Department of Veterans Affairs (VA) has disseminated this approach in primary care clinics for older adults. Looking to the future, she encouraged pragmatic trials of care guided by patient goals for TBI interventions to provide evidence on feasibility and effectiveness. She suggested that this evidence, along with quality and payment measures, could help catalyze a shift from disease-focused practice to patient-focused care.

TBI AMONG OLDER ADULTS AND THE SOCIAL DETERMINANTS OF HEALTH

Ernest Barthélemy of the State University of New York Downstate Health Sciences University, described how the interplay of biological, psychological, social, and other (bio-psycho-socio-ecological) factors can affect a person’s care journey after TBI and change their recovery trajectory—including missed or delayed diagnosis and difficulty in accessing specialized and/or continuous care. He emphasized the ongoing effort to develop a more precise framework for TBI classification, highlighting the recent National Institutes of Health (NIH)-proposed clinical, biomarker, imaging, and modifier (CBI-M) framework that encourages consideration of the social determinants of health that can modify a person’s care and recovery pathway.

Outlining research priorities for TBI in older adults, Barthélemy called for further investigation of who is at risk of developing posttraumatic dementia, including research into biomarkers of dementia risk in populations that have so far been underrepresented in translational TBI and dementia studies. An age-adjusted mortality analysis indicated that Black individuals had higher mortality rates from neurological disease than other ethnic and racial groups irrespective of neurological diagnosis, he said (Woolf et al., 2023). Using the NIH All of Us Database, which was designed to capture a more nationally representative dataset of health in the U.S. population, Barthélemy and colleagues studied neuropsychiatric diagnoses after TBI and found that new diagnosis of dementia happened more commonly in white patients compared to Black individuals, with no discernable influence from socioeconomic differences as reflected by Social Deprivation Index scores. Dementia literature indicates that Black and Hispanic patients are more likely than white patients to experience a missed or delayed clinical dementia diagnosis (Lin et al., 2021), he said, which may contribute to observed differences in dementia diagnoses after TBI.

Barthélemy also highlighted the role of implementation science in changing systems and behaviors, identifying as priorities the need to miti-

gate barriers to participating in translational research and clinical trials and to investigate the efficacy of strategies for improving access to post-TBI outpatient care. He emphasized the importance of data and evidence in changing reimbursement practices to facilitate the ability of patients and families to access post-TBI services, including potentially reforming or expanding relevant Medicaid and Medicare policies.

OPTIMIZING CARE TRANSITIONS AND IMPROVING REHABILITATIVE OUTCOMES

Monique Pappadis, the University of Texas Medical Branch at Galveston, discussed strategies to optimize care transitions after TBI. Care pathways after TBI are influenced by factors including the person’s functional status, availability of beds in facilities, insurance coverage, and financial status. There are differences among individuals and communities in access to TBI care—in emergency, acute, rehabilitation, outpatient, nursing home, hospice, and community settings—as well as in recovery outcomes (Asemota et al., 2013; Budnick et al., 2017; Chang et al., 2008; Gorman et al., 2020; McQuistion et al., 2016; Meagher et al., 2015; Zarshenas et al., 2019). Differences in recovery outcomes and transition back to the community for older adults with TBI have also been associated with age, number of chronic conditions, sex, education, financial means, geographical location, and availability of a caregiver, Pappadis said (Anderson et al., 2021; Daras et al., 2018; Evans et al., 2021, 2022; Faul et al., 2016; Pretz et al., 2017). For example, she reported that older adults who are socioeconomically disadvantaged, live in rural areas, or have functional impairment are less likely to ultimately recover and return to the community.

In addition, studies have also shown that older adults with TBI who are Black or Hispanic are twice as likely to be discharged home without inpatient or outpatient rehabilitative services compared to white patients, even when controlling for insurance coverage, she reported. Meanwhile, individuals who returned home without services but have primary care providers are more likely to return to the community and have a lower risk of emergency department visits and readmission, she said. Greater motor and cognitive functioning are also associated with a higher likelihood of successfully returning home, whereas patients who live alone, have multiple chronic conditions, and/or are in rural locations are less likely to return home rather than to an inpatient rehabilitation facility. Pappadis outlined facilitators that support successful transition home after TBI, including increasing access to home health and community-based services and focusing on patient health status and improved functioning. She encouraged care providers to identify interventions and programs to support an individual’s ability to return to their community and to connect TBI patients with primary care providers.

PROMOTING BRAIN HEALTH AFTER TBI IN OLDER ADULTS: LESSONS LEARNED FROM THE EPIDEMIOLOGY OF NEUROLOGIC AND VASCULAR OUTCOMES

Andrea Schneider, University of Pennsylvania, discussed brain health after TBI in older adults. She differentiated between older adults who had a TBI in younger life and those who had a TBI event in older age, noting that some individuals belong in both categories. Although TBI-related mortality was stable in the overall U.S. population from 1999 to 2020, it rose significantly among people aged 75 years or older (Shaik et al., 2024). Long-term outcomes after TBI in older adults can be studied by using data from ongoing epidemiologic studies. For example, the Atherosclerosis Risk in Communities (ARIC) study has followed a cohort of almost 16,000 individuals for over 40 years. Analysis of ARIC data reveals that TBI increases the risk of ischemic stroke by 1.3 times over a median of 27 years postinjury (Elser et al., 2024), with greater head injury frequency and severity associated with higher risk, and a stronger association between TBI and stroke for more severe ischemic strokes.

VA data also indicate that TBI increases the risk of ischemic or hemorrhagic stroke, increasing risk 1.7 times over a median of 5 years postinjury, with the increased risk being highest during the first year (Schneider et al., 2023). Another analysis of ARIC data found that TBI carried a risk for cognitive decline equivalent to being 7.4 years older, and having two or more TBIs posed a risk equivalent to being 10 years older (Schneider et al., 2024a). Moreover, TBI was associated with 1.4 times the risk of developing dementia over a median of 25 years, with greater number of head injuries associated with greater dementia risk (Schneider et al., 2021). ARIC data analyses also indicate that TBI is associated with 1.9 times increased risk of epilepsy over a median of 8 years (Schneider et al., 2022). Posttraumatic epilepsy is associated with a three-fold risk of dementia compared to individuals without TBI or epilepsy; this risk is higher than that posed by TBI alone or by epilepsy alone (Schneider et al., 2024b).

Given these intersections of TBI history with later-life vascular and neurologic outcomes, Schneider suggested that research needs to shift from treating TBI as an independent risk factor to better contextualizing TBI and associations with long-term health outcomes in the context of brain health. She encouraged the use of existing longitudinal datasets as a cost-efficient method of gaining new insights into TBI risk and resilience factors across the life course.

DISCUSSION

Discussion expanded on the needs and opportunities for patient-guided care after TBI. Care that is guided by the patient’s goals is not as time con-

suming as health professionals might expect, Tinetti stated; once a care provider becomes comfortable with the process, it does not require more time than traditional approaches, and Medicare codes created in recent years cover aspects of patient-goal-guided care, enabling billing and reimbursement for the process. Biese added that patient-goal-guided care reduces time spent in downstream health care utilization. For instance, a major health care system found that aligning goals of care with patient goals reduced hospital stays by an average of 5 days.

Tinetti emphasized that variability in TBI presentation and recovery makes the use of individualized outcome measures more meaningful than generic ones. Establishing individualized outcome metrics involves identifying patient priorities, translating those into specific and measurable goals, and conducting goal attainment scaling to quantify progress. Tinetti added that the National Committee for Quality Assurance is researching the use of goal-attainment scaling as a clinical practice quality measure and as a potential payment measure. Nelson noted research indicating that access to a telephone-based care navigator upon hospital discharge reduces polypharmacy and cost of care, while improving care quality and quality of life in patients with dementia and their caregivers. Noting the value of identifying protective factors for dementia risk after TBI, Schneider highlighted current research analyzing ARIC data to understand the effects of midlife social networks on dementia rates.