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Moving the Field Toward Health Equity in Traumatic Brain
Moving the Field Toward Health Equity in Traumatic Brain Injury
Monique R. Pappadis, PhD • Chinedu K. Onwudebe, BS Anthony H. Lequerica, PhD • Angelle M. Sander, PhD, FACRM
Significant research-based efforts have been made to explore disparities in access to healthcare and outcomes following traumatic brain injury (TBI), particularly over the last five years. We know that health disparities exist in racialized/minoritized ethnic groups, women, children and older adults, underserved persons living in rural areas, and socioeconomically disadvantaged populations in TBI.1-6 The vast majority of the literature has focused on racialized/ minoritized ethnic groups, such as Black/African American and Hispanic/Latinx individuals. Other health disparity populations with TBI, such as sexual and gender minorities, religious minorities, language minorities, and those with disabilities, have not received as much attention. Furthermore, the social identities of these groups have been explored in isolation, but now there is a movement towards using an intersectionality approach, where we acknowledge that each individual is unique with multiple social identities that can be associated with different social positions.7 This approach acknowledges the role of power and one’s social context at the individual or interpersonal level, as well as inequalities or inequities experienced. This intersectional approach is a first step toward promoting health equity and, more broadly, toward fairness and social justice.
Social determinants of health (SDoH) play a significant role in health and health outcomes. SDoH are the economic and social conditions in our environments, where we are born, live, learn, work, play, worship, and age, and that affect our health, functioning, associated risks, and outcomes.8 Examples include sociodemographic factors, health behaviors, family functioning, structural discrimination, availability of services, and health care policies. When SDoH are unevenly distributed, the result is health disparities. Therefore, health disparities are preventable, historical or current differences in the “burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations”.9 By addressing SDoH to reduce disparities, we can move towards health equity, where everyone can live to their healthiest potential and have access to needed healthcare services regardless of who we are, our abilities, where we live, insurance status, or what financial resources we have.
The National Institute on Minority Health and Health Disparities Framework is a multi-dimensional model that represents a variety of SDoH that are important to understanding and addressing minority health and health disparities over time.10
The model suggests that there are five key domains of influence, including biological, behavioral, physical/built environment, sociocultural environment, and healthcare system domains. Within each of these domains are four different levels of influence, which include the individual, interpersonal, community and societal levels. These domains and their respective levels impact individual, family/ organizational, community, and population health outcomes. It is important to remember that facilitators and barriers to health may change over time from the individual to societal level; therefore, any framework to understand health disparities must be flexible to change. Most of the work in TBI research has focused on the individual level rather than on the sociocultural environment and health system domains.
For example, numerous studies have explored sociodemographic differences, US born vs non-US born status, rurality, and insurance status and their impact on rehabilitation or health outcomes after TBI. However, there is a dearth of research focused on the health care system from the individual level (e.g., health literacy) to the societal level (e.g., quality of care). Within the past five years, there has been emerging research on individuals’ perceived discrimination and racism, but not on systemic biases at the community and/or societal level.
Individual Influences
Consistently, financial resources and health behaviors are identified as key drivers of health and health outcomes following TBI.11,12 However, there may be other individual factors that influence health that have yet to be explored. For example, increasing evidence suggests that abnormal growth hormone secretion and altered gut microbiome following TBI may influence neurocognitive and behavioral deficits.13 Future work is needed to explore the mechanistic determinants that will promote health and reduce the risk of biological changes that negatively impact health outcomes. At the sociocultural domain, we know from limited research that persons with TBI with limited English proficiency, particularly Spanish speakers in the US, have unique experiences and report negative TBI outcomes.14,15 More efforts are needed to improve care and access to resources to improve outcomes for persons with TBI with limited English proficiency.
The field has done well with identifying many of the aforementioned individual factors in disparities, but not much has been done with addressing the identified gaps.
Future work should consider the development of educational materials to address health knowledge or health literacy gaps, culturally-relevant interventions to improve health and health behaviors, and training on responding to discrimination or racism that may negatively impact health. In addition, it is worth considering supports and resources that individuals can be taught to use to facilitate health and well-being, such as the use of health monitoring interventions and technology. This is by no means an exhaustive list but are considerations for addressing individual-level health disparities.
Interpersonal Influences
Caregiving burden, family dysfunction, and decreased social networks are recognized consequences of TBI given considerable attention.16-18 In addition, school and work functioning are other important behavioral SDoH that can influence the health of the family unit. Providing services and treatment to support the entire family, promoting awareness and health of caregivers, and therapy to address social difficulties following injury are some examples to address the family and social consequences of injury.
Resource facilitation is an effective service that provides support to persons with TBI who are reintegrating back into their community, work or school, as well as addressing family needs. There has been promising results from studies that have explored resource facilitation among persons with TBI.19,20 In addition, several state brain injury organizations have either already implemented RF services or are pursuing legislation to support its implementation at the state level. More coordinated efforts are needed to explore the implementation of programs and services to improve family functioning, as well as work and school outcomes. At the health system level, significant disparities in access to rehabilitation are evident, particularly for children and adolescents with limited English proficiency and Medicaid, and older Black and Hispanic adults.21 These groups face barriers in the availability and proximity of rehabilitation services. In addition, in areas where Hispanics made up a majority of the population, they were still less likely to be discharged to rehabilitation and nursing facilities,22 but it is possible that these findings are driven by patient and family preferences to be home versus institutionalized. More work is needed to explore the availability of services beyond inpatient rehabilitation, such as access to emergency departments, acute hospitals, nursing homes, and outpatient services. Future studies should take into account the number of providers in the community as a factor that can affect the health of persons with TBI, particularly providers who are as diverse as the populations that they serve. At the behavioral and physical environmental domain of influence, community integration and neighborhood environmental factors (e.g., crime, poverty, housing) influence health disparities following
TBI.23,24
Several strategies have been suggested by service users with TBI and housing service providers,25 which include service coordination and forming partnerships, as well as engaging in social activities and designing home and neighborhood environments. Changes at the neighborhood level would require improved coordination of services, developing policies to improve access and safety, and providing community efforts to connect persons with TBI and their families to needed services.
Societal Influences
Although the different state and federal laws, particularly in the US, are beyond the scope of this article, it must be acknowledged how existing laws and policies influence the behaviors of patients, families, clinicians, organizations, institutions, payers, and governments. In the US, most states currently have Medicaid Home- and Community-Based Services (HCBS) waivers to provide care and services to persons with disabilities and older adults, but only about half of them include TBI specific services. There is significant variability in how states provide HCBS waiver services to persons with brain injury, which may include a variety of services such as cognitive rehabilitation, supportive employment, care management, durable medical equipment, and rehabilitative/therapy services, among others. As one can imagine, there are numerous opportunities where such practices can further create inequities to care and disparities in health outcomes.
Furthermore, structural racism or discrimination can influence health by contributing to psychosocial stress and trauma, and poor access to health and social resources can impact the health, environment, and opportunities of individuals, families and communities.26 Although many have incorporated racism or discrimination in the interpretation of their TBI-related studies, many have not directly examined its role in disparities in health outcomes.27 In a recent study, discrimination was associated with vascular burden, particularly among Black individuals with TBI compared to those who identified as White.28 More work is needed to explore structural factors that impact health and well-being among persons with TBI. In addition, advocacy efforts are needed to create new policies to increase access and better health outcomes for all with TBI.
In addition, advocacy efforts are needed to create new policies to increase access and better health outcomes for all with TBI.
Call to Action
A powerful tool in combating health disparities in brain injury is targeted outreach. This can be conducted by focusing efforts on centers frequently utilized by underserved populations, such as community health centers, clinics or health fairs. An approach that has been implemented in community clinics to lower disparities are health advocates, who are tasked with surveying patients on their SDoH, assessing their needs, and equipping them with resources, if desired, to mitigate those needs to improve their health holistically. This method can be applied to the field of brain injury as well. Interventions should be implemented at the individual level of need. For example, if a patient’s need was overlooked, involve their primary care physician in referring the appropriate practitioner. If interruptions with employment were a concern, then equip them with the knowledge and assistance in applying for workers’ compensation. If rehabilitation is not covered by insurance, assist the patient in appealing for the care to be covered. If the patient lacks insurance or the means to pay for desired rehabilitation, aid them in applying for Medicaid or finding a practitioner that accepts payment on a sliding scale. There is an emergence of no-cost or low-cost health clinics run by medical and rehabilitation students to address the needs of socioeconomically disadvantaged populations with disabilities, and this model should be expanded to reach groups who might otherwise not receive rehabilitation or medical services.
Clinicians and researchers must be committed to evaluating and addressing health disparities following TBI. We must acknowledge and work towards addressing our own biases, both conscious and unconscious, that may play a role in how we interact with patients and their family members, provide care, evaluate health and health outcomes, and develop interventions and programs to address the health, social, and environmental needs of patients with TBI. We also have to do better with supporting and training caregivers and family members to improve outcomes for not only the person with TBI but the functioning of the entire family and its members. At the community level, we need to advocate for more community resources, increase the availability of health care services, evaluate environmental factors influencing health and outcomes, and work towards improving the health of communities impacted by TBI. Forming partnerships with community-based organizations and advocating for more funding to support home and communitybased services is one of many possible solutions. Furthermore, we must acknowledge and address the systemic factors, such as systemic racism, diversity within the workforce, current local, state, and federal healthcare laws, barriers to access to healthcare and services across the continuum of care, and the quality of care received, that may impact populations with TBI and their families. There is significant work left to do with incorporating SDoH into clinical practice and research, examining health disparities after injury, developing treatments and programs to ameliorate health disparities, and advocating for institutional and systemic change to improve health care access, delivery, and quality of care for persons with TBI and their families, especially among groups who have been historically disadvantaged and often denied quality health care and rehabilitation.
References
1. Brown JB, Kheng M, Carney NA, Rubiano AM, Puyana JC. Geographical Disparity and Traumatic Brain Injury in America: Rural Areas Suffer Poorer Outcomes. J Neurosci Rural Pract. 2019;10(1):10-15. 2. Flores LE, Verduzco-Gutierrez M, Molinares D, Silver JK. Disparities in Health Care for Hispanic Patients in Physical Medicine and Rehabilitation in the United States: A Narrative Review. Am J Phys Med Rehabil. 2020;99(4):338-347. 3. Gorman E, Frangos S, DiMaggio C, et al. Is trauma center designation associated with disparities in discharge to rehabilitation centers among elderly patients with Traumatic Brain Injury? Am J Surg. 2020;219(4):587-591. 4. Mollayeva T, Mollayeva S, Colantonio A. Traumatic brain injury: sex, gender and intersecting vulnerabilities. Nat Rev Neurol. 2018;14(12):711-722. 5. Moore M, Conrick KM, Fuentes M, et al. Research on Injury Disparities: A Scoping Review. Health Equity. 2019;3(1):504-511. 6. Odonkor CA, Esparza R, Flores LE, et al. Disparities in Health Care for Black Patients in Physical Medicine and Rehabilitation in the United States: A Narrative Review. PM R. 2021;13(2):180-203. 7. Bilge S, Collins PH. Intersectionality. Cambridge, UK: Polity. 2016. 8. Lin JS, Hoffman L, Bean SI, et al. Addressing Racism in Preventive Services: Methods Report to Support the US Preventive Services Task Force. JAMA. 2021;326(23):2412-2420. 9. Control CfD, Prevention. Community health and program services (CHAPS): health disparities among racial/ethnic populations. Atlanta, GA: US Department of Health and Human Services. 2008. 10. Alvidrez J, Castille D, Laude-Sharp M, Rosario A, Tabor D. The national institute on minority health and health disparities research framework. American Journal of Public Health. 2019;109(S1):S16-S20. 11. Lequerica AH, Sander AM, Pappadis MR, et al. The association between payer source and traumatic brain injury rehabilitation outcomes: a TBI Model Systems study. The Journal of Head Trauma Rehabilitation. 2022:10.1097. 12. Driver S, Juengst S, Reynolds M, et al. Healthy lifestyle after traumatic brain injury: a brief narrative. Brain Inj. 2019;33(10):1299-1307. 13. Yuen KCJ, Masel BE, Reifschneider KL, Sheffield-Moore M, Urban RJ, Pyles RB. Alterations of the GH/IGF-I Axis and Gut Microbiome after Traumatic Brain Injury: A New Clinical Syndrome? J Clin Endocrinol Metab. 2020;105(9). 14. Pappadis MR, Sander AM, Struchen MA, Kurtz DM. Soy diferente: a qualitative study on the perceptions of recovery following traumatic brain injury among Spanish-speaking U.S. immigrants. Disabil Rehabil. 2020:1-10. 15. Arango-Lasprilla JC. Traumatic brain injury in Spanish-speaking individuals: research findings and clinical implications. Brain Inj. 2012;26(6):801-804. 16. Sodders MD, Killien EY, Stansbury LG, Vavilala MS, Moore M. Race/Ethnicity and Informal Caregiver Burden After Traumatic Brain Injury: A Scoping Study. Health Equity. 2020;4(1):304-315. 17. Baker A, Barker S, Sampson A, Martin C. Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clinical Rehabilitation. 2017;31(1):45-60. 18. Gordon WA, Cantor J, Tsaousides T. Long-term social integration and community support. Handbook of Clinical Neurology. 2015;127:423-431. 19. Trexler LE, Parrott D. The impact of resource facilitation on recidivism for individuals with traumatic brain injury: A pilot, non-randomized controlled study. Brain Inj. 2022:1-8. 20. Trexler LE, Parrott DR, Malec JF. Replication of a Prospective Randomized Controlled Trial of Resource Facilitation to Improve Return to Work and School After Brain Injury. Arch Phys Med Rehabil. 2016;97(2):204-210. 21. Moore M, Jimenez N, Rowhani-Rahbar A, et al. Availability of Outpatient Rehabilitation Services for Children After Traumatic Brain Injury: Differences by Language and Insurance Status. Am J Phys Med Rehabil. 2016;95(3):204-213. 22. Budnick HC, Tyroch AH, Milan SA. Ethnic disparities in traumatic brain injury care referral in a Hispanic-majority population. J Surg Res. 2017;215:231-238. 23. Sander AM, Pappadis MR, Clark AN, Struchen MA. Perceptions of community integration in an ethnically diverse sample. J Head Trauma Rehabil. 2011;26(2):158-169. 24. Pappadis MR, Sander AM, Leung P, Struchen MA. The impact of perceived environmental barriers on community integration in persons with traumatic brain injury. Acta Neuropsychologica. 2012;10(3):385-397.
NEUROREHABILITATION & RESEARCH HOSPITAL
27. Omar S, Nixon S, Colantonio A. Integrated Care Pathways for Black Persons With Traumatic Brain Injury: A Critical Transdisciplinary Scoping Review of the Clinical Care Journey. Trauma Violence Abuse. 2021:15248380211062221. 28. Bernier RA, Venkatesan UM, Soto JA, Rabinowitz AR, Hong JS, Hillary FG. Perceived discrimination and blood pressure in individuals aging with traumatic brain injury. Rehabil Psychol. 2021;66(2):148-159.
Author Bios
Monique R. Pappadis, PhD, MEd, is an Assistant Professor of the Department of Nutrition, Metabolism, and Rehabilitation Sciences at the University of Texas Medical Branch at Galveston (UTMB) and an Investigator at the TIRR Memorial Hermann’s Brain Injury Research Center. Since 2004, Dr. Pappadis has conducted patient-centered outcomes research in stroke and traumatic brain injury. She has won several research awards, published over 40 peer-reviewed publications, and disseminated several educational materials for persons with TBI and their caregivers. Her current research includes elder mistreatment, health literacy, minority aging, and equity/disparities in care and outcomes among older adults with TBI.
Chinedu K. Onwudebe, MS, is a rising 3rd year medical student at the University of Texas Medical Branch at Galveston (UTMB). He previously earned a bachelor’s degree in Biology with a minor in African Diaspora Studies at the University of Texas at Austin as well as a master’s degree in Biology with a certificate in Biomedical Sciences at the University of Houston. He currently serves as the Vice-Chair of the National Finance Committee of the Student National Medical Association (SNMA) and plans to pursue a career in physiatry and research. His interests include promoting health equity in minority and underserved populations, traumatic brain injury, and health outcomes in the incarcerated population.
Anthony H. Lequerica, PhD, is a Senior Research Scientist at Kessler Foundation’s Center for TBI Research and a Research Associate Professor at Rutgers – New Jersey Medical School in the Department of Physical Medicine and Rehabilitation. As Director of the Brain and Behavioral Outcomes Lab, his research focuses on cultural and sociodemographic factors affecting brain injury rehabilitation outcomes. He is Co-Chair of the Inclusion, Diversity, Equity, and Accessibility Special Interest Group within the Traumatic Brain Injury Model Systems sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research. He is a Staff Neuropsychologist at Kessler Institute for Rehabilitation where he provides neuropsychological services to Spanishspeakers with a variety of neurological conditions. He has over 50 peer-reviewed publications and has given numerous presentations across the U.S. and abroad to researchers, health care professionals, and individuals with brain injury and their families.
Angelle M. Sander, PhD, FACRM, is Professor in the H. Ben Taub Department of Physical Medicine and Rehabilitation at Baylor College of Medicine and Director of TIRR Memorial Hermann’s Brain Injury Research Center. She is Project Co-Director for the Texas Traumatic Brain Injury Model Systems at TIRR. She has been PI or Co-Investigator on federally funded studies addressing prediction and treatment of cognitive, emotional, and psychosocial problems in persons with TBI, intimacy and sexuality after TBI, impact of TBI on caregivers, and cultural disparities in outcomes following TBI. She co-chairs the TBI Model System Special Interest Group on Inclusion, Diversity, Equity, and Accessibility. She has over 120 peer-reviewed publications, numerous book chapters and published abstracts, and multiple consumer-oriented dissemination products, including fact sheets, educational manuals, webcasts, and videos.
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Madison Schwartz, Stanford Law, Randall H. Scarlett, Randall A. Scarlett, Ronnie Pang, Olga Rios, Mary Anne Scarlett, and Brendan D. Nay.
SCARLETT LAW GROUP
Scarlett Law Group is a premier California personal injury law firm that in two decades has become one of the state’s go-to practices for large-scale personal injury and wrongful death cases, particularly those involving traumatic brain injuries.
With his experienced team of attorneys and support staff, founder Randall Scarlett has built a highly selective plaintiffs’ firm that is dedicated to improving the quality of life of its injured clients. “I live to assist people who have sustained traumatic brain injury or other catastrophic harms,” Scarlett says. “There is simply no greater calling than being able to work in a field where you can help people obtain the treatment they so desperately need.”
To that end, Scarlett and his firm strive to achieve maximum recovery for their clients, while also providing them with the best medical experts available. “As a firm, we ensure that our clients receive both the litigation support they need and the cutting-edge medical treatments that can help them regain independence,” Scarlett notes.
Scarlett’s record-setting verdicts for clients with traumatic brain injuries include $10.6 million for a 31-year-old man, $49 million for a 23-year-old man, $26 million for a 7-year-old, and $22.8 million for a 52-year-old woman. In addition, his firm regularly obtains eight-figure verdicts for clients who have endured spinal cord injuries, automobile accidents, big rig trucking accidents, birth injuries, and wrongful death.
Most recently, Scarlett secured an $18.6 million consolidated case jury verdict in February 2014 on behalf of the family of a woman who died as a result of the negligence of a trucking company and the dangerous condition of a roadway in Monterey, Calif. The jury awarded $9.4 million to Scarlett’s clients, which ranks as one of the highest wrongful death verdicts rendered in recent years in the Monterey County Superior Court.
“Having successfully tried and resolved cases for decades, we’re prepared and willing to take cases to trial when offers of settlement are inadequate, and I think that’s ultimately what sets us apart from many other personal injury law firms,” observes Scarlett, who is a Diplomate of the American Board of Professional Liability Attorneys.
In 2015, Mr. Scarlett obtained a $13 million jury verdict for the family of a one year old baby who suffered permanent injuries when a North Carolina Hospital failed to diagnose and properly treat bacterial meningitis that left the child with severe neurological damage. Then, just a month later, Scarlett secured an $11 million settlement for a 28-year-old Iraq War veteran who was struck by a vehicle in a crosswalk, rendering her brain damaged.
