Model of Care for Chronic Brain Injury

Abstract

There is growing evidence that long-term outcomes after traumatic brain injury (TBI) are more dynamic than stable. People continue to change, both improving and declining, many years postinjury. Research, practice, and medical education have not yet fully embraced the implications of TBI as a chronic, dynamic condition. In 2020, the National Institute on Disability Independent Living and Rehabilitation Research funded the BeHEALTHY project to develop a model for long-term support of persons with chronic brain injury. Based on initial reviews of the available evidence and expert input from researchers, clinicians, and persons with lived experience, the BeHEALTHY model was proposed. Among existing chronic disease treatment models, Wagner’s Chronic Care Model was selected as a starting point, with several critical refinements. The BeHEALTHY model endorses a person-centered approach, recognizing the individual with brain injury, and their social support system, as the primary source of goals in care planning. The model also acknowledges the critical importance of self-management and the need for health care programs to actively promote self-direction by the person using their social supports. The model also recognizes that outcomes are not determined solely by the person and the injury incurred but also by the environment in which a person lives and recovers. The importance of integrating health care with community resources is underscored by embracing environmental influences as a shared responsibility of the community and the health care system. This article recounts the impetus for developing the BeHEALTHY model and describes those it is intended to serve and its structural features and core components.

In 2013, Corrigan and Hammond¹ observed that “.. .growing evidence indicates that multiple types of brain injury, including traumatic brain injury (TBI), are dynamic conditions that continue to change years after onset.” Consistent with prior conclusions from Masel and DeWitt,² the Institute of Medicine,³ and the Galveston Brain Injury Conference,⁴ Corrigan and Hammond’s¹ results supported a shift in the paradigm from thinking about long-term outcomes as determined early after injury by premorbid and injury-related factors to recognizing the fluidity of outcomes, even many years postinjury. Cross-sectional change data from the TBI Model Systems showed that change was more common than stability even 10 years after TBI. Updated data from the same cohort extending to 30 years postinjury continue to support the dynamic nature of long-term outcomes (fig 1). For every time period compared, less than half of persons with TBI were unchanged in their global outcome. Although decline was more likely than improvement, >1 in 6 improved during each epoch.

Fig 1.

Change in the Glasgow Outcome Scale-Extended (GOS-E) between 2 successive follow-up interviews.

The likelihood of change many years postinjury is a major impetus for recent calls to recognize brain injury as a chronic health condition.^5,6 Consumer organizations in both Canada and the United States have recognized both the public health burden of brain injury and the insufficient attention to mitigating deterioration and facilitating improvement after the initial period of recovery. In 2020, the National Institute on Disability Independent Living and Rehabilitation Research funded the BeHEALTHY project to develop a model for long-term management of TBI as a chronic health condition, an initiative engaging researchers, clinicians, people living with the effects of TBI, and other stakeholders.⁷ This commentary is an initial description of the proposed BeHEALTHY model. This model is intended to address the needs of people with chronic brain injury by facilitating effective use of health care and community resources while encouraging engagement in brain-healthy behaviors across the lifespan. BeHEALTHY defines chronic brain injury as:

⋯the presence of persistent or recurring neurological signs or symptoms following an injury to the brain. Motor, sensory, cognitive, emotional, behavioral, functional, and/or social effects may persist for an extended period—often more than six months—recur or emerge over a person’s lifetime.

This case definition, and the subsequent BeHEALTHY model, is applicable to all acquired brain injuries and is not limited to TBI. The case definition is not intended to be diagnostic nor to imply that all brain injuries require management as a chronic condition. Vetting with professionals and consumers has identified concerns that the problems of living with a brain injury should neither be “sugar-coated” nor imply that nothing can be done to improve one’s status.

The BeHEALTHY model for health care programs serving persons with chronic brain injury is shown in figure 2. A preliminary BeHEALTHY model was derived based on expert opinion and initial review of the available evidence⁸ with refinement through further literature review and stakeholder input. From a review of existing chronic disease treatment models,⁸ Wagner’s Chronic Care Model⁹ was selected as a starting point, with several critical refinements. The BeHEALTHY model endorses a person-centered approach,¹⁰ placing the person with brain injury, along with their informal and formal social support system, as the primary focus of program values and goals. The model acknowledges the critical importance of maximizing self-management and the need for the health care program to actively promote the self-direction of the person and their social supports. The BeHEALTHY model is intended for a broad array of persons living with the effects of chronic brain injury. Although many are likely to have care partners, there are others who will be managing their care and their life independently. Others will be experiencing marked deficits as a result of their injury. Consistent with a person-centered approach, a person’s level of impairment does not negate their role as the director of their care. It is incumbent upon the BeHEALTHY team to elicit a person’s goals and facilitate them as much as possible, including by building community supports as needed.

Fig 2.

BeHEALTHY model for self-directed management of chronic brain injury.

The model recognizes that the health care system must bring multiple subject matter experts to address the wide array of biopsychosocial issues potentially confronting a person living with brain injury. Core areas of expertise include brain injury medicine, mental health and cognition, exercise and movement, social and vocational engagement, community resource navigation, and care coordination. Because of its requisite components, a BeHEALTHY program will typically be situated in a tertiary medical center. Although comprehensive care of TBI is outside the scope of most primary care clinicians, coordination and communication of the BeHEALTHY program with primary care services is essential.

The model also recognizes that outcomes are not determined solely by the person and the injury incurred but also by the environment in which a person lives and recovers. The importance of integrating health care with community resources is underscored by adapting the Chronic Care Model to make the influence of the environment a shared responsibility of the community and the health care system. These components of the BeHEALTHY model prescribe that the intensity of support provided to a person is not just based on medical acuity but also incorporates the extent of independence in self-management as well as the resources in a person’s community. Community resources, including social cohesion/support, food security, and neighborhood safety, are important social determinants of health that should be addressed in models of chronic health care.¹¹

The BeHEALTHY model delineates 9 core components, summarized in table 1 and described here, which incorporate proactive monitoring, surveillance, and management of brain injury over one’s lifetime. Minimization of health risks includes the prevailing evidence for optimizing brain health, regardless of injury history or functional status.

Table 1.

Core components of the BeHEALTHY model.

1. Educate and support participant and caregiver  ●Proactive referrals: community resources, therapy, psychology, specialists, primary care physicians  ●Support group participation  ●Access to educational materials, caregiver manual, group education  ●Monitor and support the caregiver’s emotional and physical health  ●Informal telephone support  ●Self-management:   ○Training and manual   ○Compensatory strategies for self-management   ○Skills empowerment counseling sessions

2. Identify and treat emotional and behavioral dysfunctionand reduce hazardous activities  ●Stress management  ●Depression, anxiety, irritability, anger, aggression  ●Problematic substance use  ●Fall risk

3. Reduce potential iatrogenic harm  ●Reduce/avoid medications (over-the-counter and prescription) that may hinder recovery or function (eg, anticholinergic agents, antipsychotics, centrally-inhibiting agents, benzodiazepines, and opioids)  ●Avoid unsubstantiated pessimism about future outcomes

4. Prescribe traumatic brain injury-appropriate treatments toaugment function and recovery  ●Medications  ●Identify and treat medical issues  ●Therapy services  ●Vision services  ●Vocational rehabilitation  ●Equipment, orthoses, assistive devices  ●Assistive technologies

5. Facilitate social and intellectual engagement  ●Review extent of social interactions, time in community, productive roles  ●Review social supports, including emotional, informational, and instrumental  ●Develop a plan to engage in valued activities (eg, leisure, employment, and socialization)

6. Encourage healthy brain behaviors  ●Ask about sleep patterns and habits; teach sleep hygiene; diagnose and treat sleep disorders, if needed  ●Screen for tobacco use and promote cessation  ●Ask about and discuss alcohol and marijuana use  ●Promote physical activity/exercise  ●Evaluate the need and desire for nutritional education  ●Evaluate need for education on reinjury prevention  ●Prioritize/individualize based on needs, awareness, preferences

7. Review for comorbid health conditions and medications that can influence cognitive health or cause excess disability  ●Screen for known comorbid conditions associated with brain injury   ○Pain, neuroendocrine, diabetes, hypertension, hyperlipidemia, myocardial infarction, cerebrovascular disease (ischemic stroke or transient ischemic attack), peripheral vascular disease, chronic pulmonary disease, bladder, renal disease, liver, psychiatric diagnoses, substance use disorders, Alzheimer-type dementia and parkinsonism   ○Determine the functional effect of the comorbid condition (s) and facilitate appropriate treatment as needed  ●Work in concert with primary care   ○If needed, support participant in identifying a primary care physician   ○Refer to and work with primary care physicians for diabetes, hypertension, hyperlipidemia management, and other primary care needs   ○Serve as a resource to improve provider capacity and participant ability to manage comorbid conditions in context of the individual’s impairments

8. Facilitate communication  ●Between the individual and/or care partners and the BeHEALTHY team  ●Between other services providers and the BeHEALTHY team  ●Within the BeHEALTHY team

9. Evaluate community barriers and opportunities that couldbe addressed to improve outcomes  ●Screen for basic living needs such as housing, transportation, food, or finances (ie, social determinants of health)  ●Facilitate connections with community supports to help address needs

Education and support.

Both the person who has experienced a brain injury and their care partner(s) need to be well-informed to optimize outcomes. Education includes both general awareness of brain injury and the specific knowledge needed for activation, skill development, goal setting, and supporting self-management. Relevant, brief, easy-to-comprehend, action-oriented materials compiled into an instructional resource are essential. Education that incorporates peer interaction can be particularly useful, including support group participation. Group sessions are commonly employed for self-management education and activation.¹² For individual needs, one-on-one visits may also be needed for education, counseling, goal setting, and applying compensatory strategies. To facilitate self-management, scheduled and unscheduled remote (telephone or virtual) contacts can be used to facilitate monitoring and support of patients and care partners between in-person visits.

Identification and treatment of emotional and behavioral dysfunction and reduction of hazards.

Proactive risk management includes screening for depression, anxiety, irritability, anger, aggression, problematic substance use, and fall risk. Central to optimizing lifelong, healthy living after brain injury is ongoing skill building for coping and stress management. Of note, many barriers exist to identifying and addressing these hazards, such as poor self-awareness, limited resources, the neurobehavioral symptoms themselves, and lack of cognitive accommodations in treatment.^13,14

Reduce potential iatrogenic harm.

People living with the effects of brain injury often look to their providers for information about prognosis and treatments. To avoid self-fulling prophecies of low expectations for treatment, providers should avoid unsubstantiated pessimism about future outcomes. Evidence-informed, provider-participant discussions should also help persons with brain injury to be aware of ineffective treatments as well as potentially harmful procedures. Many commonly used pharmacologic treatments (including over-the-counter agents) may negatively affect function and/or hinder recovery.^15–17 Medication usage should be regularly reviewed with consideration of the effects of both short- and long-term use and the potential need for discontinuation, substitution, or close monitoring.

Prescription of brain injury-appropriate treatments to augment function and recovery.

A critical aspect of BeHEALTHY is an activated team knowledgeable about the treatments for brain injury that optimize outcomes. Data about long-term outcomes have shown that people with brain injury often continue to achieve meaningful functional gains even up to 30 years post-TBI. Thus, among the goals of the treatment team should be identification of opportunities to enhance outcome, regardless the time postinjury. This includes having a high index of suspicion and screening for medical issues that may present after TBI and cause deterioration or impede recovery. Opportunities for treatment include pharmacologic and nonpharmacologic treatments targeted to enhance cognitive, motor, emotional, and behavioral function (eg, neurostimulant medication, treatment of spasticity, counseling, cognitive behavioral therapy, vision evaluation, vocational rehabilitation, equipment, orthoses, assistive devices, and technologies).

Facilitate social and intellectual engagement.

Routine evaluation should include a review of the extent of social interactions, time in community, productive roles, and social supports, including emotional, informational, and instrumental. Based on this information, the treatment team should help the individual with TBI develop a plan to engage in valued activities (eg, leisure, employment, and socialization). Future work will need to evaluate ways clinicians can screen and measure engagement, how to develop an engagement plan. and which team member(s) may be best suited to implement them.

Encourage healthy brain behaviors.

The backbone of the BeHEALTHY model is the integration of healthy brain behaviors to promote wellbeing and longevity for life with brain injury. Brain health after TBI is multifaceted and includes attention to sleep, tobacco cessation, abstinence from alcohol and marijuana, regular physical activity, appropriate nutrition, and reinjury prevention. This emphasis is consistent with the pillars of Lifestyle Medicine.¹⁸ Achieving brain health is a long-term endeavor that requires hardwiring behavior changes supported by the BeHEALTHY team. Implementing behavior change requires individualized education, awareness, motivation, goal setting, consistency, and persistence, as well as prioritization, planning, and support.

Review for comorbid health conditions that may cause excess disability.

An important aspect of chronic brain injury care is the routine screening for and/or high index of suspicion for known comorbidities, associated or not with TBI, which may contribute to decline or complicate living with brain injury. The brain injury clinician should be aware of the presence of such conditions and their functional effects and should facilitate appropriate treatment as needed, working in concert with primary care and/or other specialty physicians. As needed, the BeHEALTHY team can support the participant in identifying a primary care physician and should refer to and work with the primary care physician for diabetes, hypertension, hyperlipidemia management, and other primary care needs. The BeHEALTHY brain injury team can serve as a resource to improve provider capacity and participant ability to manage comorbid conditions in the context of the individual’s impairments.

Facilitate communication.

For optimal chronic brain injury care, clear mechanisms must be established for collaboration and communication between the BeHEALTHY program’s team members and the participant, the participant’s care partner(s), and other providers serving the participant. Collaboration and communication mechanisms, how to screen and evaluate, and resources for providers may be borrowed from the broader evidence on team communications.^19,20

Evaluate community barriers and opportunities to improve outcomes.

Patients should be routinely screened regarding their status on basic living needs such as housing, transportation, food, finances, and safety. Such screening, in turn, informs the development of an individualized action plan. The treatment team should facilitate connections with community supports where needed, including peer-mentoring and brain injury resource facilitation, when available.

The BeHEALTHY model aspires to lifelong, comprehensive, holistic, integrated, person-centered care that optimizes both health care and community resources. The current, predominant health care financing approach of fee-for-service reimbursement outside of institutional settings cannot support a model with these goals. Financing will require braiding, if not blending, of multiple sources of programmatic support. Innovative models are being tested to serve people with multiple chronic conditions—no less should be sought for persons living with the chronic effects of brain injury. A first step can be accomplished by recognizing that brain injury is a chronic health condition of sufficient prevalence and effect to deserve a concerted public health approach. Medical research should continue to test the applicability, acceptability, and feasibility of approaches used in other chronic conditions when applied to persons living with brain injury. A clearinghouse of evidence-based treatments and best practices for care will be needed to integrate the many aspects of support required by the BeHEALTHY model. Federal funding will be required to support ongoing research as well as innovative pilot programs.

It is time for the health care system in the United States and worldwide to reverse the current practice of abandoning systematic support and services after the initial, acute episode of care. Our commitment to saving lives now needs a comparable, if not greater, effort to save lifestyles.²¹ The BeHEALTHY model, although aspirational, articulates a path forward that can be refined as we learn from its implementation.

List of abbreviation:

TBI

traumatic brain injury