Congenital and Acquired Brain Injury. 4. Outpatient and Community Reintegration

4.1 Clinical Activity: To evaluate a 45-year-old patient with a traumatic brain injury who is failing to respond to treatment because of difficulty paying attention and learning new activities 

THE SELECTION OF PHARMACOLOGIC agents is based on the neurotransmitter systems affected and the behavioral changes that result from manipulating them. Both the monoaminergic (dopamine and norepinephrine) and cholinergic pathways have widespread projections throughout the brain, making them susceptible to injury from traumatic brain injury (TBI). Evidence from numerous sources supports the role of these pathways in cognitive performance.1 Therefore, pharmacologic intervention can be used to facilitate the rehabilitation process for patients with TBI.

4.2 Educational Activity: To create and justify practice guidelines for a health insurance plan for delivering cognitive remediation to patients who have sustained brain injury 

Cognitive rehabilitation refers to therapeutic interventions that are aimed at restoring prior function or developing compensatory techniques in light of neurocognitive deficits. Of note, individual programs use a combination of these 2 approaches. Often they are a blend of techniques based on patient needs and treatment setting. Cognitive therapies are often provided in the postacute setting in an outpatient or day rehabilitation program. The individualized therapy programs and outcome measures have made it difficult to report the effectiveness of treatment.7

Recent literature has supported the use of cognitive rehabilitation techniques after acquired brain injury, including TBI. These techniques include visuospatial rehabilitation, cognitive therapies, pragmatic interventions, memory retraining, and strategies to augment attention. When compared with traditional therapies alone (standard physical therapy, occupational therapy, speech therapy), cognitive rehabilitation conferred a significant benefit in 37 of 47 trials. Recommended treatment guidelines from the review of the literature by Cicerone et al8 include scanning therapy for visuoperceptual deficits, high-intensity treatment of language deficits, and memory strategy training in mild memory deficits. The reader is referred to that review for further information on treatment techniques. The effectiveness of assistive technologies in memory retraining, such as notebooks, computers, and programmed reminder devices, is seen in observational studies but has not been replicated in prospective, controlled trials.9 Among the rehabilitation approaches that are not beneficial after TBI are the use of computers for retraining of unilateral left neglect and computer-based training for memory remediation without involvement of a therapist.

Limited studies on rehabilitation strategies aimed at specific post-TBI deficits exist. These studies have focused on skill-specific training or relearning a necessary skill with appropriate repetition. In attention rehabilitation, the use of skill-specific training can help patients relearn tasks of functional importance. Compared with direct retraining of attention, the rehabilitation of specific skills that required attention showed more significant improvements.10 For example, patients trained in visuomotor tracking and divided attention had better driving function than untrained controls.11

Individual rehabilitation techniques can be offered within a comprehensive, multidisciplinary outpatient treatment setting. Outcomes in these settings have often been measured in terms of changes in cognitive testing. However, return to independent living and productive work also are key outcomes to measure. Researchers12 in a milieu-based, neuropsychologic rehabilitation program focusing on behavioral and cognitive dysfunction after TBI published long-term outcomes on a stable cohort of patients. When including volunteer work, 88% were considered productive, and 77% were in a competitive environment up to 11 years after discharge. Also, no decline in productivity was seen over time. The group-based therapies emphasize increasing awareness of injury-related difficulties and support socially appropriate behaviors. The appropriate choice of work environments, such as a supportive employer willing to allow compensations in the workplace, is also important in considering work outcomes.12 Further study in the same rehabilitation program has documented the importance of a working alliance between patient and staff, motivation, and compensation status in supporting better outcomes.12

Considerable controversy exists over recent research regarding the effectiveness of cognitive rehabilitation. A randomized trial by Salazar et al13 compared in-hospital cognitive rehabilitation and home therapies. The study showed no significant differences between groups, although patients who were unconscious for more than 1 hour (ie, those with moderate to severe injuries) did better with in-hospital rehabilitation. This trial studied a milder group than those described in previous studies, and the treatment structure was different from that used in a postacute setting.13 Criticisms of these findings include a high return to work rate that far exceeded those previously reported, a severity of injury rarely treated in an inpatient rehabilitation setting, and a patient population with readily available postinjury employment (military service).14 This study further delineates the need to study cognitive rehabilitation services and to guide clinical practice based on scientific evidence.

The field of TBI rehabilitation has evolved more by empiricism, pragmatic change, and observational study than by controlled clinical research because practical and ethical constraints to randomizing treatment and withholding services exist for this patient population. Consensus exists that the field of rehabilitation research requires alternative ways to study TBI issues, beyond those of conventional randomized controlled trials (RCTs).2, 8, 15 The heterogeneous nature of the population with TBI and the lack of standardized measures of injury severity and impairment limit the ability of the RCT to show treatment efficacy and effectiveness. Analyzing clinical practice across centers to understand what aspects of care and treatment most influence outcome in a practice-based evidence approach and using practical and behavioral clinical trials are 2 alternatives to more commonly used clinical research designs.

4.3 Clinical Activity: To evaluate and treat a patient with a TBI with limited insight whose spouse reports that he is having problems with sleep and lack of energy and is not participating in activities they used to enjoy 

Post-TBI psychiatric disorders, such as major mood disorders and personality disorders, are associated with poor outcomes and impede successful community reintegration.16 They occur more frequently in people with TBI than in the general population,17 with reported rates often exceeding 50%.18 Risk factors include a pre-TBI diagnosis of a psychiatric disorder,17, 18, 19 alcohol abuse,17 and unemployment and poverty,20 indicating the need to obtain a thorough psychiatric history to identify people at increased risk. The increased risk of developing psychiatric disorders lasts at least several decades after injury,21 although the prevalence tends to dissipate as time postinjury increases.22 Major depression is the psychiatric illness most often seen after TBI, either alone or in combination with other conditions such as substance abuse, personality disorders, and various anxiety disorders.19 Diagnosing a post-TBI psychiatric disorder is often complicated by coexisting TBI-related symptoms such as fatigue and apathy, suggesting a careful evaluation by health care professionals familiar with this patient population.

Specific treatment strategies for post-TBI depression are poorly studied, although selective serotonin reuptake inhibitors are recommended,23 with sertraline being found to be effective for improving both mood and cognition.24, 25 Tricyclic antidepressants are often avoided because of their anticholinergic affects on cognition and potential to lower the seizure threshold. Other classes of antidepressants, such as mirtazapine and bupropion, are also poorly studied after TBI but are likely useful.23 Bupropion, however, must be used cautiously given the associated risk of seizures.26 Methylphenidate and dextroamphetamine have been suggested as adjuvant antidepressants that may also improve cognitive skills.27 Various psychosocial interventions are also helpful, including cognitive behavioral therapy (CBT) and peer mentoring,28 and are frequently used in conjunction with medications.

Lithium, carbamazepine, and valproate are mood stabilizers and may also be used to treat aggression and related symptoms such as anger and irritability. However, they may exacerbate cognitive impairments and, depending on the drug used, require diligent laboratory assessments to monitor for hepatoxicity and/or marrow suppression as well as serum drug level and electrolytes.27 Limited studies suggest that atypical antipsychotics may be useful in ameliorating TBI-related aggression and psychosis, but higher doses are associated with extrapyramidal side effects.29 Typical antipsychotics, such as haloperidol and thioridazine, are generally avoided after TBI because of numerous side effects, which include impaired cognition, dystonias, akathisias, impaired neurologic recovery, lowered seizure threshold, neuroleptic malignant syndrome, and extrapyramidal symptoms.27

Fatigue is very common after TBI although its etiology and treatment are poorly delineated. It may be associated with sleep disorders, such as sleep apnea or insomnia, both of which have greater prevalence in people with TBI than in the general population.30, 31, 32 Treatment of insomnia should include CBT and/or pharmacologic interventions. CBT combines psychologic and behavioral interventions aimed at changing dysfunctional beliefs and attitudes about insomnia, and it addresses poor sleeping habits. It has comparable short-term effectiveness and better long-term outcomes than pharmacologic interventions in subjects with chronic insomnia.33 Several broad categories of pharmacologic agents may be used to treat insomnia. Benzodiazepines improve several sleep parameters but may alter normal sleep architecture; they also may have several undesired effects, including tolerance, dependence, withdrawal effects, rebound insomnia, or “hangover” effects. Nonbenzodiazepine sedative hypnotics, which include the “z” agents, zolpidem, zaleplon, and zopiclone as well as eszopiclone, also improve several sleep parameters. These agents generally lack the problems associated with the benzodiazepines, although some risk of dependency exists. Although it has been studied primarily on subjects with both insomnia and comorbid depression,34 trazodone is among the most frequently prescribed sleeping agents. Ramelteon is a highly selective melatonin receptor agonist and, along with eszopiclone, is approved for long-term use.

Other TBI-related conditions may exacerbate fatigue. These conditions include psychiatric and endocrine disorders. Individuals with fatigue should be evaluated for these conditions and given appropriate treatment. If fatigue persists despite appropriate treatment, other drug treatments have been suggested, including psychostimulants, modafinil, and amantadine, some of which have been successfully used in other neurologic conditions, although no studies in TBI have yet been reported.

4.4 Learning Objective: You have been asked to give a presentation to the state brain injury association on clinical resources available to maximize TBI patients’ return to their previous roles. Describe the components 

The breadth of clinical impairment, limitation in multiple realms of personal activity, and restrictions to social and vocational participation that are associated with brain injury require a spectrum of resources to support personal, social, and community reintegration. Outpatient brain rehabilitation services ideally are organized in a way similar to inpatient services, with experienced clinicians available in all disciplines to provide care along the continuum of recovery. Close clinical follow-up is indicated throughout the recovery process after moderate to severe TBI but is particularly important initially after hospital discharge to identify treatable conditions such as mood disorders, spasticity, and seizures. As the postacute phase of recovery proceeds, resuming personal roles and independent living, returning to work, and assessment of driving skills often become primary rehabilitation issues.

Coordinated, multidiscipline, peer-based outpatient group programs are effective in resuming community living and vocational roles after TBI.15, 35, 36 Returning to vocational roles is often a primary goal of these programs, a goal that can be facilitated by incorporating a clinical vocational coordinator in rehabilitation programming or by accessing community-based vocational rehabilitation services. Outpatient programs that include family intervention may have a positive effect on outcome because poor family functioning is associated with less improvement during postacute rehabilitation compared with patients whose families function healthily.37 Outcome also improves when scheduled counseling and education are provided to people with TBI by telephone in the postacute period after discharge from inpatient rehabilitation.38 Community-based programs promoting socialization and group activities are also common, often organized by clubhouse organizations or centers for independent living.

Cognitive impairment, behavioral changes, and activity-limiting sensorimotor impairment can strain personal roles both personally and professionally. Intimacy and sexuality are known to change after TBI, and problems must be identified and treated early on to minimize long-term or permanent consequences.39 Social isolation and loneliness are very common, and a lack of friends significantly limits community participation and academic performance.40

Driving is an important personal activity that increases community reintegration and vocational opportunities.41 Clinical assessment of driving skills includes evaluation of sensorimotor impairment, vision, and cognitive function. Community-based behind-the-wheel driving evaluations may also be used, and a patient’s return to community driving is often preceded by retaking the state driving tests. Physician responsibilities for reporting impaired driving skills vary widely among states.

4.5 Clinical Activity: To provide advice to a cardiologist who must obtain informed consent for a cardiac catheterization from your 56-year-old patient who still has some cognitive impairments 9 months after his TBI 

Decision-making capacity (sometimes referred to as “competence”) is often impaired after brain injury. Questions frequently arise about a patient’s capacity to engage in activities such as health care decision making, financial management, and participation in research. Although our discussion focuses on health care decision making, the approach outlined is applicable to other contexts; details are presented in Appendix 1, Appendix 2, Appendix 3, Appendix 4.

The focus should be on the process by which a patient makes a decision and not on the decision itself. If the process is sound, then the patient’s decision is considered valid, regardless of the clinician’s opinion of the patient’s choice. It is also important to keep in mind that decision-making capacity is not an all-or-nothing phenomenon; patients can lack the capacity to make certain decisions but not others. This is because different decisions place different cognitive demands on patients. For instance, a patient may be able to make a simple decision (to take an antacid for gastric reflux) but be unable to make a more complex decision (to choose medical vs surgical management for mild coronary artery disease). These examples underscore that decision-making capacity is not simply a matter of the patient’s abilities but the match between those abilities and the decision-making demands of the situation.

Certain logistical issues should be kept in mind. It is important to confirm that the optimal mode of communication is established with the patient, especially given the ubiquity of communication impairments after brain injury. Also, adequate time should be spent with the patient, and supplementary modes of communication (eg, written explanations, visual aids) should be used when appropriate. Furthermore, because cognitive capacities can fluctuate after brain injury, multiple evaluations may be necessary to ensure that a patient’s best performance is observed. One must also make sure that reversible factors that might impair the patient’s decision-making capacity (eg, sedating medications, fatigue) are minimized.

Although direct observation is the foundation of the evaluation, supplementary information also plays an important role. This information is of 2 types: (1) observations from staff and family members and (2) results from formal neuropsychologic testing. As a result of the time they spend with the patient, both family and staff have knowledge that may be relevant. For instance, they might note that the patient may behave in a manner inconsistent with the answers he/she provides in formal assessments. These verbal-behavioral “dissociations” are common after brain injury and have implications for a patient’s capacity to make certain decisions on financial or sexual issues, for example. When considering information provided by family members, however, one should be aware of any potential biases or conflicts of interests that might be present.

Neuropsychologic testing can also provide useful information, so long as one understands that it is not a substitute for direct clinical assessment. Studies have confirmed that formal testing is not nearly as accurate as the direct clinical assessment of a patient’s decision-making capacity.42 Testing does play an important role by enabling clinicians to identify why a patient’s decision-making capacity is impaired, a factor that is not always apparent on direct evaluation. For instance, a direct clinical assessment may not tell us if a person’s inability to understand the information provided is caused by inattention or by a language deficit. Being able to identify the underlying cause(s) enables clinicians to attempt interventions to either correct the deficit (eg, discontinuing a sedating medication) or compensate for it (eg, providing verbal explanations for someone with alexia).

Although the model presented here is widely accepted in bioethics and the law,43 it has limitations when applied to persons with brain injuries. In particular, both direct clinical evaluation and formal neuropsychologic testing assess cognitive impairment, but they do not often detect the affective, volitional, and behavioral deficits that can also affect decision-making capacity. Finally, if a patient is found to lack decision-making capacity, it is important for the clinician to be familiar with the legal and ethical issues involved in identifying an alternate decision-maker.