Traumatic brain Injury (TBI) is a serious public health problem in the United States, and a leading cause of death and disability. The physical, cognitive, emotional and behavioral consequences of TBI are well documented, and often persist for months to years following injury. Some impairments stemming from TBI may be lifelong. Given that TBI frequently affects young adults and occurs at a time when important milestones are being reached, such as graduating from high school, entering college, launching a career, or getting married, aggressive and well-designed neurorehabilitation is necessary to ensure successful reintegration into the community (Khan et al., 2003). This article will present the essential therapeutic and medical components of TRR programs that promote restoration of function, participation in meaningful activities and significant life roles, and improve life satisfaction and quality of life.
Continuum of Care
Since the late 1970’s/early 1980’s, a specialized continuum of care has evolved to address the multiple and complex changes caused by TBI (Bontke and Boake, 1991). Medical management immediately following injury (i.e., emergency medicine; intensive/critical care) and acute rehabilitation are hospital-based and focus on management of medical emergencies and complications, medical stability, and re-establishment of basic functional skills (transfers and mobility, communication, basic activities of daily living, etc.). A large percentage of persons with moderate to severe brain injury are not ready to return home following acute rehabilitation due to on-going medical issues (seizure disorders, endocrine dysfunction, etc.), or physical, cognitive, and behavioral profiles that place them at high risk for further medical complications and re-injury. These patients require further intensive treatment. Transitional residential rehabilitation (TRR) programs provide on-going medical management, as well as the appropriate level of structure, supervision, and intensity of skilled therapies necessary to promote independence and a safe transition to the community.
Components of Effective Transitional Residential Rehabilitation Programs
There is considerable evidence supporting the effectiveness of TRR programs in improving activities of daily living (Geurtsen et al., 2008), cognition (attention, memory), communication, and executive functioning (Cicerone et al., 2000 & 2005), behavioral control (Wood et al., 1999), and vocational skills (Shames et al., 2009). So effective are TRR programs that they are considered best practice, or standard of care following TBI (Tsaousides and Gordon, 2009).
The Role of Comprehensive, Interdisciplinary Treatment & Clinical Practice Guidelines
TRR programs are comprehensive and interdisciplinary or transdisciplinary in nature, delivering skilled therapies in multiple health profession disciplines in a holistic fashion. A comprehensive approach is necessary to address the complex needs of persons with TBI previously mentioned. An inter- or transdisciplinary approach is necessary to ensure the blending of common core clinical skills, sharing responsibility for therapeutic interventions and outcomes, pooling of resources for efficiency, and promoting a patient-centered approach to treatment (Pethybridge, 2004). Clinical practice guidelines that are informed by systematic reviews of the literature are used to guide clinicians and optimize patient care.
The Role of Treatment Intensity, Duration, and Setting
TRR programs deliver therapeutic interventions at an appropriate intensity and duration to achieve preferred patient outcomes. Greater treatment intensity is associated with better functional outcomes and reduced lengths of stay (Kahn et al., 2003; Zhu et al., 2009). Comprehensive TRR programs may provide up to 5-8 hours of skilled therapy daily.
Therapeutic interventions include remediation techniques, compensatory strategies, assistive technology and environmental modifications to improve function. Skills and strategies taught in the clinic are transitioned to community-based venues (banks, grocery stores, restaurants, etc.) to ensure generalization to the discharge community. This exposure to real-world experiences in environmentally relevant contexts promotes adaptive neural plasticity. However, in practice, there is great variability in TRR treatment programs with regard to clinical (i.e., licensed professionals) and non-professional staffing, patient injury characteristics and demographics, and treatment components (Glenn et al., 2004). Ultimately, therapy intensity and lengths of stay are driven by a host of factors including patient injury severity and accompanying impairments (Cioe, 2016), access to essential clinical and medical components of TRR programs, and constraints imposed by payors (Ashley et al., 1993). In many TRR programs, skilled therapies are complemented by protocol-driven training delivered by non-professional staff that act as “therapy extenders”. These staff, well trained and often credentialed as Nursing Assistants or Brain Injury Specialists, provide patients opportunities for rehearsal and repetition of skills and strategies in environmentally valid contexts in the community. This community-based training has a positive influence on functional outcomes. As the ultimate goal of TRR programs is reintegration into the community and resumption of meaningful daily activities (meal preparation, budgeting and banking, community mobility and transportation, etc.) and participation in significant life roles (spouse, parent, homemaker, breadwinner, etc.), an extended treatment duration is required. The literature suggests a duration of 28 to 52 weeks (Geurtsen et al., 2010); however, the maximum rehabilitative potential for persons with moderate to severe TBI has not been definitively delineated.
The Role of the Rehabilitation Physician
Persons entering TRR programs are medically stable but are not “cured”, and require on-going medical management. Brain injury is no longer considered a static event. It is now recognized that in many individuals, a TBI is the beginning of a chronic disease-like process (Masel and DeWitt, 2010). Post-traumatic seizures are seen in approximately 16% of individuals with severe TBI (Annegars et al., 1998) with a latency of onset of as long as 12 years (Aarabi et al., 2000). Post-traumatic neuroendocrine dysfunction occurs in approximately 30-40% of individuals with TBI (Schneider et al., 2007), and can significantly impact the rehabilitation process. Sleep disorders are prevalent following TBI (Masel et al., 2001) and have a negative impact on cognition. The unmasking, as well as the de novo development of psychiatric disease, is, unfortunately, common following TBI. As individuals are referred to TRR programs earlier, post brain injury confusion, agitation and aggression are common sequelae, as are the psychiatric sequelae more often associated with the later effects of the brain injury such as depression, mood disorders, anxiety and obsessive-compulsive behavior. (Zasler et al., 2012). The development of spasticity is common early following a TBI (Elovic et al., 2004) and must be treated quickly and effectively for early ambulation and independence. Clearly, the medical practitioner(s) associated with the TRR program must be knowledgeable in Physiatry, Neurology, Internal Medicine and Psychiatry, and stay abreast of a rapidly expanding literature. Clinical practice guidelines have been proposed for hormone replacement, and emerging evidence points to benefits of treating sleep disorder and disturbances in protein synthesis that frequently accompany TBI. Non-invasive brain stimulation (i.e., transcranial magnetic stimulation) is a promising intervention for motor recovery.
The Role of Case Manager and Coordinated Treatment
Treatment delivered in a coordinated fashion, facilitated by a case manager, is necessary to ensure collaboration and cooperation among team members, removal of disciplinary boundaries, and integration of external providers (specialty providers, medical follow-up, adaptive equipment/DME) into the treatment plan. Case managers focus therapy team members on patient goals and agreed-upon outcomes, provide family education and training, and advocate for patients to ensure continued access to treatment. Case managers improve efficiencies by reducing redundancies in the delivery of therapies. Integrated, interdisciplinary treatment facilitated by a case manager positively influences discharge planning and transition to home.
The Role of the Family and Family Education and Training
TRR programs recognize the patient and family as important members of the treatment team. Collaboration between the family and clinicians is promoted as the treatment plan is developed, implemented, and refined. Families often express greater satisfaction with rehabilitation when they are listened to, recognized for their experience with the patient, and when they are supported in times of distress. Commonly, families desire information about the brain injury (i.e., location and severity), disabilities that may stem from injury (i.e., memory problems, mobility, ADL’s, etc.), and information regarding recovery (Lefebvre et al., 2005). Therapists and case managers must recognize the magnitude of the challenges facing the family and balance the imparting of accurate information with emotional support. Given that most individuals with TBI are discharged home to the care of family members, thorough training of caregivers is paramount. Family caregivers interface with the treatment team and receive training not only in safe transfers, ADL techniques, use and care of adaptive equipment, and dietary consistencies and swallowing safety, but also medication regimens, sleep hygiene, and methods to manage seizures and behavioral dysregulation. The complex and long-term demands placed on the family after TBI can be overwhelming. TRR programs provide counseling to families to address grief associated with loss, and uncertainty about the future. Effective communication strategies, realistic boundary setting, healthy coping techniques, and reappraisal/reassignment of family roles are the focus of family counseling.
The Role of Discharge Planning, Follow-up, and Outcomes Reporting
Thoughtful discharge planning, periodic follow-up, and outcomes measurement and reporting are components of TRR programs. Discharge planning involves not only identifying current needs and a focus on the immediate discharge environment but also the long-term needs and potential problems the patient and family may encounter. Immediate needs at discharge may include ensuring home modifications are in place, adaptive equipment and DME have been delivered, and follow-up appointments with medical specialties are scheduled. Encouraging family to allow the patient to engage in ADL’s independently, maintain a daily rhythm and activity schedule, attend a support group and avoid high-risk activities to reduce the probability of re-injury are also the focus of near-term discharge planning.
Longer range planning identifies activities and resources to support quality of life, such as engagement in productive activities (work, school, volunteer activities), opportunities for social engagement (support groups, church), and intermittent rehabilitation to avoid isolation, development of mood disorders, and maladaptive coping strategies (i.e., substance misuse). Promoting an enriched environment (exercise, cognitive and social stimulation) may slow age-related cognitive decline. Participation in periodic follow-up initiated by the facility or the family can assist with early problem detection and allow the family to connect with local resources to avoid crises. Additionally, periodic follow-up incorporating problem-solving strategies, emotional support, and positive psychology practices to promote resilience, may reduce isolation and onset of negative emotional states (i.e., anxiety, depression).
TRR programs collect and report outcomes data to objectively measure response to treatment and maintenance of gains made during rehabilitation.
Comprehensive TRR programs are effective and considered best practice or standard of care following TBI. A number of key components coalesce to produce positive outcomes that promote engagement in meaningful activities, participation in significant life roles and improve quality of life. These components include an involved and knowledgeable rehabilitation physician, use of evidenced-based clinical practice guidelines, intensive integrated interdisciplinary therapy coordinated by a case manager, family involvement and periodic follow-up.
Advances in medicine, such as hormone replacement, dietary supplementation, and non-invasive brain stimulation, and the incorporation of positive psychology practices during follow-up, and exposure to enhanced environments for the long term may further improve the effectiveness of TRR programs and maintenance of outcomes.
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About the Authors
Gary S. Seale, PhD, is Regional Director of Clinical Services for the Centre for Neuro Skills. He received his doctoral degree in Rehabilitation Science from the University of Texas Medical Branch (UTMB) in Galveston, Texas. He is licensed in Texas as a Psychological Associate and Chemical Dependency Counselor, and holds a clinical appointment at UTMB in the School of Health Professions – Department of Rehabilitation Science. He has worked exclusively in post-acute brain injury rehabilitation for over 27 years and has conducted research and published peer-reviewed articles on topics including rehabilitation outcomes, the relationship between positive emotion and recovery of functional status following stroke, and emergency preparedness for disabled populations.
Brent E. Masel, MD, is the Executive Vice-President for Medical Affairs with the Centre for Neuro Skills and is a Clinical Professor of Neurology at the University of Texas Medical Branch in Galveston. He has been a Board Certified Neurologist for 40 years, and has conducted research in the field of brain injury with over 40 publications in the areas of brain injury rehabilitation including virtual reality, hyperbaric oxygen treatment, sleep abnormalities, metabolic abnormalities, hormonal dysfunction, and the long term medical issues from chronic brain injury.
Seale, G. S., & Masel, B. E. (2018). What Should Comprehensive Neurorehabilitation in a Transitional Residential Rehabilitation Program Look Like? Brain Injury Professional, 15(1), 12-14
From Brain Injury Professional, an official publication of the International Brain Injury Association and the North American Brain Injury Society. www.braininjuryprofessional.com Reprinted with permission.