Recognition of Traumatic Brain Injury as a Chronic Condition: A Commentary

Abstract

Many clinicians believe that residual impairments due to traumatic brain injury (TBI) are static once initial recovery has plateaued. That is, the effects of the injury are not expected to change significantly over the remainder of a person’s life. This assumption has been called into question by several independent longitudinal studies showing that the long-term course of TBI may be better characterized as dynamic rather than static. Health care services that recognize brain injury as a chronic condition would encourage education on self-management to improve or protect health, as well as proactive health care that anticipates common co-morbidities. Those who have had a TBI would be encouraged to engage in lifestyles that optimize wellness. Almost all developed countries commit additional public health resources to addressing chronic conditions. In the United States, specific benefits are available from health insurance plans, particularly Medicare and Medicaid, for persons experiencing chronic health conditions. Potentially the most important benefit would derive from health care practitioners becoming aware of the dynamic nature of chronic brain injury and thus being more attentive to how their patients could be better served to optimize improvement and minimize decline. Recognition of TBI as a chronic condition would not only focus more resources on problems associated with living with brain injury but would also enhance both the public’s and professionals’ awareness of how to optimize the health and well-being of persons living with the effects of TBI.

Traumatic brain injury (TBI) often leads to a variety of physical, cognitive, emotional, behavioral, and functional changes that can improve over time, but may also persist or worsen for a substantial number of individuals. ^1,2 Many clinicians believe that residual impairments due to TBI are static once initial recovery has plateaued, creating the expectation that no significant change due to the TBI will occur over the remainder of a person’s life. This assumption has been called into question by several independent longitudinal studies showing that the long-term course of TBI may be better characterized as dynamic rather than static. ^1,2 Data from the TBI Model Systems has shown that for persons with more severe injuries, functional limitations, comorbid conditions, and social disadvantage can persist across a lifetime. ¹ Average, grouped trajectories over the first 10 years post-injury showed early improvement that plateaus and subsequently declines. However, individual trajectories were much more heterogeneous. Overall, change was more common than stability with multiple risk factors interacting to influence the lifelong course. ^1,2 While the TBI Model Systems is limited to persons with more severe injuries requiring acute rehabilitation, results from the Transforming Research and Clinical Knowledge in Traumatic Brain Injury (TRACK-TBI) longitudinal dataset, which includes persons receiving medical care for TBIs of all severity, also showed that change is more common than stability over the first seven years post-injury. ³ Brett and colleagues concluded that their “…results dispute the notion that TBI is a discrete isolated medical event with a finite static functional outcome after a relatively short period of upward recovery. (p. e751).” ³

Recent advocacy by consumer organizations in Canada (https://braininjurycanada.ca/en/tbi-position-paper) and the United States (https://www.biausa.org/public-affairs/public-awareness/news/brain-injury-community-pushes-for-recognition-of-brain-injury-as-a-chronic-health-condition) calling for brain injury to be recognized as a chronic health condition is intended to increase the attention given to living with brain injury. In a promising development, on June 3, 2024, the Center for Medicare and Medicaid Services (CMS) published a final rule re-defining what medical conditions can be considered chronic health conditions for Special Needs Plans (42 CFR Parts 422.2; www.ecfr.gov/current/title-42/part-422/section-422.2). For the first time, TBI is now included among the chronic conditions that are eligible for enrollment in these plans, though inclusion is not mandatory. Hopefully, this initial recognition by CMS will prompt providers, other payers, and policymakers to adopt this approach.

As with diabetes, ⁴ health care services aligned with brain injury as a chronic condition would encourage education on self-management to improve or protect health, as well as proactive health care that anticipates common co-morbidities in persons who have had a TBI while promoting lifestyles that optimize wellness. There are multiple practical advantages to designating TBI as a chronic health condition. Almost all developed countries commit additional public health resources to addressing chronic conditions. In the United States, specific benefits are available from health insurance plans, particularly Medicare and Medicaid, for persons experiencing chronic health conditions. Potentially the most important benefit would derive from health care practitioners becoming aware of the dynamic nature of chronic brain injury and thus leading them to become more attentive to how their patients could be better served to optimize improvement and minimize decline.

Like the lead public health agencies in other developed countries, the US Centers for Disease Control and Prevention (CDC) includes a division dedicated to the prevention and treatment of chronic disease—the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP; https://www.cdc.gov/chronicdisease/data/statistics.htm). The NCCDPHP conducts extensive surveillance at both state and national levels that generates a plethora of data on conditions deemed chronic. The NCCDPHP website lists 17 interactive data applications offering detailed data with data visualization to capture the prevalence and consequences of chronic diseases. One of the largest programs, the Behavioral Risk Factors Surveillance System (BRFSS), is conducted every year in every state and provides both cross-sectional and longitudinal information about the health of the non-institutionalized adult population. The BRFSS currently collects information on 11 chronic conditions, including heart disease, diabetes, kidney disease, respiratory disorders, cancers, depression, and stroke, but not TBI. Notably, the health and functional consequences of persistent TBI are commensurate with some of these chronic conditions, particularly stroke. The wealth of information about health and well-being captured by BRFSS items about these chronic conditions provides every state the ability to conduct detailed analysis of the well-being of its residents who endorse having the chronic conditions included in the survey. Beyond surveillance, the NCCDPHP devotes considerable resources to educating both the general public and health care practitioners on disease prevention, health promotion, and risk reduction including harm reduction.

The Medicare program in the United States has multiple policies that allow additional services to be made available to beneficiaries with chronic conditions. An important example is the Medicare Advantage program that allows insurers to offer “Special Needs Plans” to subscribers with specific diagnoses, in particular, chronic diseases. These Health Maintenance Organization- or Preferred Provider Organization-type plans provide all the same services as a Medicare Advantage Plan but may expand their benefits to include coverage responsive to a specific chronic condition, including a customized prescription drug formulary and overarching care coordination services. A plan customized to the needs of person with TBI might include expanded therapies, cognitive remediation, other post-acute services, or expanded behavioral health coverage. Moreover, care coordination coverage would also be an important additional service for persons with chronic TBI.

State Medicaid programs also typically provide additional services and supports for persons with chronic conditions through both capitated managed care plans, typically Managed Care Organizations (MCOs), and home and community-based waiver programs. A 2023 report from the Kaiser Family Foundation concluded that, as of July, 2020, 57 million Medicaid enrollees—72% of all Medicaid beneficiaries—received their care from MCOs (https://www.kff.org/medicaid/issue-brief/10-things-to-know-about-medicaid-managed-care/). States regulate Medicaid MCOs via contractual obligations, typically specified in a bidding process. An example of how chronic conditions are addressed in a state Medicaid MCO contract is provided by the Ohio Medicaid Provider Agreement for Managed Care Organizations (as revised 07/2023; https://medicaid.ohio.gov/resources-for-providers/managed-care/mc-policy/managed-care-agreements/managed-care-agreements) which specifies that persons with chronic conditions receive care responsive to the medical needs of their condition and that they cannot be discriminated against on the basis of their condition. Benefits are required to be stratified by identified populations, specifically “…women (maternal and infants), children with behavioral health conditions, adults with behavioral health conditions, healthy adults, healthy children, and members with chronic conditions. [emphasis added]”[page 112]. Medicaid Home and Community-Based Services are typically designed to maintain persons in the community in lieu of nursing facility care. However, federal requirements under the 1915(i) waiver can be customized to specific populations. This waiver allows additional services to be provided without the requirement that the recipient meet clinical criteria for a nursing facility level of care. To our knowledge, only one state, North Dakota, includes TBI among the conditions eligible for these waiver services.

In discussions of the designation of TBI as a chronic condition, some clinicians have expressed concerns about an iatrogenic effect from the public, assuming that any TBI can result in chronic health problems. Like other recognized chronic diseases (e.g., atrial fibrillation, hypertension, stroke, depression, anxiety), not all TBIs result in chronic effects. Based on current evidence, isolated TBIs with initial, minimal effects on brain function can be expected, in most cases, to resolve without complication or chronic effect. While it would be naïve to believe that no one will overestimate the effects of a minor injury, we should commit to educating the public about factors that are more likely to result in chronic effects (e.g., severity of injury, cumulative injury, and co-morbid interactions). Further, public and provider education should take the opportunity to detail lifestyle choices that promote brain health (e.g., exercise, sleep, nutrition, engagement, and safety) regardless of the presence of a chronic condition. We believe the benefits of recognizing the long-term effects of TBI outweigh the risks.

Another question raised about recognizing TBI as a chronic condition is whether the long-term effects should instead be called a “syndrome.” Some argue that the damage from the injury is only acute; it is the effects of the damage that are chronic. The shortcoming in this conceptualization is that it underestimates growing evidence of dynamic biological changes that are an extension of the injury itself. For instance, Wangler and Godbout recently reviewed mechanisms by which microglia contribute to inflammatory processes after TBI including the influence of aging on microglial reactivity and chronic inflammation. ⁵ Izzy and colleagues’ have demonstrated that there is widespread risk for co-morbid disease, regardless the initial injury severity or the bodily system involved. ⁶ Further, the now well-documented risk of later life dementia due to prior TBI lends support to the hypothesis that there are enduring, underlying biological processes causing later developing morbidity and mortality. ⁷ It is too early in the discovery process to deemphasize biological processes that may eventually be viable targets for intervention.

Both health care financing and public health programs should recognize the importance of TBI being recognized as a chronic health condition. The benefit to the individual, their family, and society justifies this emphasis. The recognition of TBI as a chronic condition provides the opportunity to optimize improvement or health maintenance for individuals with TBI. As a dynamic condition, decline is made more likely when health care does not recognize the opportunity to maintain health, reduce risk, and otherwise provide needed services across the lifespan. The recognition of TBI as a chronic condition opens the door for resources to become available and for both public and professional awareness to grow to facilitate the optimum health and well-being for persons living with the effects of TBI. CMS should take additional steps to approach TBI as a chronic health condition in both Medicare and Medicaid programs. CDC should act now to recognize TBI as a chronic condition and expand strategies for surveillance in order to establish the foundation of a public health approach.