Objectives:  To understand and express the requirements for technology-enabled relationship management for people with TBI, particularly with respect to emerging therapies based on neuroplasticity, and consider whether and how technology-enabled patient engagement and care collaborations solutions may play a role to improve health related quality of life and lower cost for people with TBI.

Methods:  We conducted a limited scope rapid review of the literature using the search terms “traumatic brain injury,” “brain injury” and “neuroplasticity.”  We interviewed authors of various papers and articles as well as recognized leaders in the field.  We selected Advocates Brain Injury Services, in Boston, Massachusetts as our primary use case community.  We interviewed Dr. Michelle Demore-Tabor, Director of Brain Injury Services at Advocates Brain Injury Services.

Results:

1. Defining the TBI Care Unit:

Traumatic Brain Injury is “an alteration in brain function, or other evidence of brain pathology, caused by an external force.”² TBI is one of two designations within the broad category of brain injury. Brain injury broadly is defined as the “occurrence of an insult to the brain that causes damage.” In addition to TBI the other major designation is “acquired brain injury” (ABI). According to the literature, brain injury is a term that is used to denote a brain injury that occurs after birth that is not congenital, hereditary, degenerative, or induced by birth trauma (e.g., stroke, tumor, aneurysm, viral encephalitis). Thus, one may conclude that TBI is a subset of ABI. In practice, the term usually refers to brain injury caused by something other than Trauma. The long term pathology of TBI is often similar to ABI but may also be significantly different. 2 in 10 patients will die within 5 years post-injury and approximately 4 in 10 will have a functional limitation.⁷

The health impact of TBI can vary in terms of intensity, length, and clinical manifestation. TBI can contribute to functional limitation, disability, and decreased quality of life. The hallmark symptom of TBI is cognitive disturbances, also referred to as cognitive disorders. Cognitive disorders are a category of mental health disorders that primarily affect learning, memory, perception, and problem solving, and include amnesia, dementia, and delirium. While anxiety disorders, mood disorders, and psychotic disorders can also have an effect on cognitive and memory functions, the DSM-IV-TR does not consider these cognitive disorders, because loss of cognitive function is not the primary (causal) symptom.^[1] Causes vary between the different types of disorders but most include damage to the memory portions of the brain.^[2][3][4]

In addition to cognitive disorders, TBI can affect motor function, behavior, and emotion. TBI related conditions may substantially resolve within a reasonably short period, often less than two years, or they may persist throughout a person’s life, with huge implications for both a patient’s health related quality of life and cost of care.

2.  Goals of the TBI Care Unit:

At a high level, the objectives of the Traumatic Brain Injury (TBI) Care Unit are to:

• IMPROVE TRAUMATIC BRAIN INJURY PATIENT FUNCTIONAL STATUS

• IMPROVE OPERATIONAL EFFICIENCY OF CLINICIANS

Stakeholder Goals
1. Patients and Caregivers (volunteers, usually family members)

• Maximize independence and reduce behavior difficulties
• Minimize physical, psychosocial, emotional and spiritual distress

2. Providers (multidisciplinary care team)

• Improve workload efficiency of care team in order to spend more time on direct patient care
• Provide care coordination among providers, as well as home health care providers and caregivers.
• Improve quantitative performance measures
• Meet Meaningful Use objectives

1. Payers (Private Insurance, Medicare, Medicaid, Veteran’s Affairs, Employers)
2. Reduce overall healthcare cost

Functional objectivesThe Traumatic Brain Injury Unit has the following functional objectives:

1.  Cognition: Patients will be able to execute complex mental processes.
2. Communication: Patients will be able to understand language and express his needs.
3. Mobility: The patient will be able to move purposely and independently in their own environment with or without assistive devices.
4. Self-Care (ADL): The patient will be able to perform the most basic physical tasks and personal care activities with or without assistive devices.
5. LADL: Patient will be able to do Shopping, keeping a check book or other bank account, managing personal income
6. Functional Independence and Technology: The patient will use technology and adaptive devices to enhance functional independence.
7. Safety: Patients will be able to discriminate between activities that are safe and unsafe to engage.
8. Employment: Patient will be able to return to previous employment or engage in vocation training for a different position.

3.  Evidence-based practices and functional requirements for the TBI Care Unit

Because of the persistent nature of complications from TBI, along with the variability in these complications, there is no single, commonly accepted evidence-based protocol for the treatment of TBI. Rather treatment addresses the clinical manifestations of TBI, such as cognitive disorder, behavioral disturbances or motor function.⁸  Whatever the therapy, it is critically important that patients with TBI have on-going access to appropriate and adequate care to support recovery, maximize independence, and promote reintegration.⁹

Due to the challenges posed by patients with TBI, the structure of the rehabilitation should be diverse. For example, there is emerging evidence suggesting that the needs of patients with TBI may be different than those with ABI, suggesting that traditional long-term care facilities may not be appropriate for patients with brain injury.9 Patients with TBI are more likely to be younger, to have problem behavior (e.g., verbal or physical aggression, wandering, self-injury, sexually inappropriate behaviors, and resistance or non-compliance), and more likely to be male.9

For patients returning home, increased demands and/or burdens are placed upon family caregivers.17 Several studies highlight the need for additional research on the effectiveness of different rehabilitation treatments for significantly improving outcomes, i.e., return to work, return to school, family integration, and social mobility.¹⁸

In response to the needs of TBI patients, specialized brain injury units have evolved to provide a continuum of rehabilitative services. ¹¹ Some of these units care for TBI patients only, while others care for TBI and ABI patients. A recent Institute of Medicine report highlighted the lack of publicly available protocols and manuals available for intervention and research. There was a dearth of studies examining the long-term effects of TBI and patient-centered outcomes.

With respect to cognitive disorder, treatments depend on how the cognitive disorder is caused. Medication and therapies are the most common treatments; however, for some types of disorders such as certain types of amnesia, treatments can suppress the symptoms but there is currently no cure.^[3][4]  Over the past 20 years there has been limited improvement in clinical outcomes for patients with TBI however no effective therapy has been approved by a regulatory agency.¹⁶ Recent advances in treatment models based on neuroplasticity, the brain’s ability to reorganize itself by forming new neural connections, show promise. Neuroplasticity allows the neurons (nerve cells) in the brain to compensate for injury and disease and to adjust their activities in response to new situations or to changes in their environment. These models may form the basis for new evidence-based therapies that could have a significant benefit for people with TBI.

TBI poses significant challenges particularly for those who strive to live independently, not in a long term care facility. These settings may include group homes or with family.  Challenges relate to providing continued therapy that traditionally relies upon direct interaction with clinical staff, early identification of adverse events and care coordination.

Functional objectives

The Traumatic Brain Injury Unit has the following functional objectives:

1. Cognition: Patients will be able to execute complex mental processes.

1. Communication: Patients will be able to understand language and express his needs.

1. Mobility: The patient will be able to move purposely and independently in their own environment with or without assistive devices.

1. Self-Care (ADL): The patient will be able to perform the most basic physical tasks and personal care activities with or without assistive devices.

1. IADL: Patient will be able to do Shopping, keeping a check book or other bank account, managing personal income

1. Functional Independence and Technology: The patient will use technology and adaptive devices to enhance functional independence.

1. Safety: Patients will be able to discriminate between activities that are safe and unsafe to engage

1. Employment: Patient will be able to return to previous employment or engage in vocation training for a different position.

4.  Actionable therapies and the role technology can play

1. Engagement. Engagement is the process of initially drawing people into therapy and maintaining a high level of participation in therapy for the long term.  Online and mobile technology social media provides an excellent opportunity to build and foster participation in a community that not only shares a common interest around TBI but has both local geographic and global dimensions.

1. Screening. Online and mobile technologies can incorporate existing screening tools.  Integration with EHR systems increases access for patients, families and other stakeholders.
2. Assessment. Online and mobile technologies can increase access to the assessment tools as well as provide comparative benchmarks over time, creating a visual representation of a patient’s progress over time.
3. Treatment plan. Online and mobile technologies can be used to link assessments to plans.  By increasing patient access through technology, the patient and other informal stakeholders can be more effective as health managers.
4. Therapies and interventions. Online and mobile technologies can be used to promote reminders of interventions and therapies as well as to capture information about adherence.  This gives the patient, the informal support team and clinicians a quick view into exactly what the patient is doing, captured contemporaneously from the patient.

4.  Possible barriers to the adoption of the TBI Care Unit

Barriers to treatment include (a) Mobility and Physical (home accessible, stairs, hills), (b) transportation and accessibility, (c) financial, and (d) support. Online and mobile technology, including remote video conferencing, can help overcome these barriers. 

5.  Metrics for evaluating the TBI Care Unit

Measurable outcomes. Currently there is no one measure that adequately captures the complete range of difficulties that people with TBI experience. TBI measures can be broadly defined as instruments or scales that assess physical and cognitive ability, along with psychological functioning, after the injury. Measurable outcomes include both data captured by clinicians and a new set of data directly from the patient, to demonstrate progress and identify potential health challenges at the earliest possible time.  Aggregation of the results of many patients through online and mobile technologies not only demonstrates the effectiveness of therapies but also leads to the potential for predictive analytics that can further improve therapeutic strategies.

1. Operational efficiency. Given that demand exceeds capacity of treatment services, and that payment is not aligned with necessary treatment, operational efficiency is critical. Essentially, there are three goals:
2. Increase the number of patients seen relative to the number of clinicians;
3. Extend the treatment beyond the present funded period, and;
4. Align service delivery with new payment models, particularly reimbursable telemedicine as well as outcomes based payment models such as the Medicare Shared Savings Plan.
5. Clinical outcomes. Effective online and mobile technologies can allow clinicians to increase levels of interaction while decreasing the labor component of that interaction, leading to the ability to serve more patients with fewer resources while maximizing revenue. Some of the possible measures of success might include:
6. Improvements in assessment scores related to independence and social reintegration
7. Productivity Outcomes; return to school (if student) or previous job or whether required vocational activities, return to lower levels of employment
8. In patients with attention deficits, the goal is the ability to remain attentive over time.
   
   3. Quality of life. Along with operational and clinical outcomes, measures of quality of life may be the most significant measures of progress.  Simple measures, configured for each individual, for example, moving out of an in-patient setting.  Success in a group home, or moving from a group home to a more independent setting, each may represent the greatest measures of success in the treatment of TBI.

6.  Financial implications of the TBI Care Unit

These findings suggest that insurance reimbursement drives rehabilitation practice and policies and that current reimbursement practices may not be adequate to assist patients in regaining lost skills or to compensate for lost function.¹⁹ To be effective, rehabilitation programs must be of sufficient scope, intensity, and duration. To achieve this goal, adequate funding in terms of health insurance is needed.  Some states are finding a way to provide improved funding for the on-going cost of treating TBI.  The Center for Medicare and Medicaid Services (CMS) offers states the opportunity to secure a “waiver” from the standard CMS payment schedules that allows a state to offer its Medicare and Medicaid beneficiaries increased payment and service opportunities for on-going care.²⁰ Massachusetts, for example, has two such waivers that allow service providers the opportunity to offer personalized services for the entire lifetime of the individual.  One of these, the ABI waiver, is specifically designed for people with TBI and acquired brain injury.

Conclusions

Given the nature of TBI and the limited research, it is not likely that we will see the development of a unified evidence-based practice and protocol.  On the other hand, with the increased focus on innovative technologies such as programs that incorporate neuroplasticity models, it is likely that significant advances to improve health and lower cost can be demonstrated.  The real question is funding, not only for the initial research but also for the ongoing costs of providing such services.  Clearly, a configurable platform that can incorporate the most effective tools for patient engagement and care collaboration will be a part of the future in the treatment of TBI.  The only question is When?