Brain Injury Rehabilitation: What Works, For Whom and at What Cost? Mary G. Brownsberger, Psy.D., ABPP, CBIST Raissa Novik, M.A.

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1 Brain Injury Rehabilitation: What Works, For Whom and at What Cost? Mary G. Brownsberger, Psy.D., ABPP, CBIST Raissa Novik, M.A., LAC May 2015

2 Defining Brain Injury Acquired Brain Injury An acquired brain injury is an injury to the brain, which is not hereditary, congenital, degenerative, or induced by birth trauma. An acquired brain injury is an injury to the brain that has occurred after birth. Traumatic Brain Injury (TBI) TBI is defined as an alteration in brain function, or other evidence of brain pathology, caused by an external force.

3 Statistics Brain injury can result in a range of outcomes (statistics obtained in 2010) 52,000 die 280,000 are hospitalized; and 2.2 million are treated and released from an emergency department Children ages 0 to 14 years, TBI results are an estimated 2,685 deaths; 37,000 hospitalizations; and 435,000 emergency department visits. Data obtained from the CDC ( )

4 Effects of Brain Injury Decline in cognitive functioning (reasoning, processing speed, judgment, concentration, memory, learning) Difficulties with communication Emotional and behavioral effects (inhibition, awareness, risky behavior, depression, anxiety) Executive dysfunction (problem solving, multi-tasking, organizing, impulsivity, task completion) Physical impairment

5 ICF Framework

6 Why is Research into Brain Injury Important? Over 5.3 million Americans have lifelong disabilities due to TBI. Risk factors post injury: stroke, epilepsy, mood disorders, Alzheimer s disease, and substance abuse. From , 244,000 service members were affected by TBI. TBI s annual cost is estimated to be $76.5 billion. Average lifetime health care costs for TBI are roughly $85,000 but can exceed $3 million.

7 Implementation of Research Funders of Research: National Institutes of Health (NIH) NIDRR (National Institute on Disability and Rehabilitation Research) National Brain Injury Association CDC Private foundations (e.g., Resnick Family Foundation) Where Research Is Being Conducted: Bancroft NeuroRehab VA CDC Model Systems (Mount Sinai, Moss Rehab, JFK, Kessler) Universities (U/Wash, UAB, NYU, etc) Other brain injury rehabilitation programs and universities

8 Research at Bancroft NeuroRehab Current Research in Traumatic Brain Injury: Aging related to outcomes in brain injury Self-efficacy Problem solving Social comparison Resilience following brain injury Previous research in Traumatic Brain Injury: Self Compassion Financial decision making Mood related to outcomes Quality of life related to outcomes Family needs

9 Research History The 20th century introduced advanced radiology technologies such as CT and MRI scans that improved the treatment and diagnosis of head injuries. The 1950 s is referred to as the "modern era" of head injury. In the 1970s, there was a surge in brain injury awareness resulting in the distinction between primary and secondary brain injury. The 1990 s saw the development of standardized guidelines for treatment of TBI

10 Milestones In Brain Injury 1974-The Glasgow coma scale published by Teasdale and Jennett 1984-Traumatic coma data bank The NIH held Consensus Development Conference on Rehab of Persons with Traumatic Brain Injury Known as the "Decade of the Brain" s - TBI is the signature injury of OIF and OEF conflicts (Iraq and Afghanistan) 2000 s - Increased public awareness of sports concussions, impact of multiple TBI s (Chronic Traumatic Encephalopathy) Washington state passed the first concussion in youth sports law called Zackery Lystedt Law Return to Play Protocol drafted for the NFL

11 Legislation Section 504 of the Rehabilitation Act of 1973 Americans with Disabilities Act (1990) Traumatic Brain Injury Act (1996 and 2012) IDEA (1997) Olmstead decision (2009) 2010 N.J. Laws, Chap. 94 (2010 AB 2743)- head injury awareness for high school students

12 Statistics reported by SCIENCEWATCH using data collected by Thomson Reuters Web of Science

13 Brain Injury As a Chronic Condition It has been thought that after a plateau in TBI related rehabilitation, symptoms remain consistent however after recent research a new light has been shed on the treatment of TBI. The current view of treatment of individuals with moderate or severe TBI is that change is more common in rehabilitation than stability. Increasing evidence also supports the notion that a traumatic brain injury can lead to progressive degenerative processes affecting cognitive or motor function, or both.

14 A New Way of Understanding Brain Injury: Injury to the brain can evolve into a lifelong health condition termed chronic brain injury (CBI). CBI impairs the brain and other organ systems and may persist or progress over an individual s life span. CBI must be identified and proactively managed as a lifelong condition to improve health, independent function and participation in society. Corrigan, J and Hammond, F (2013)

15

16 Using a Chronic Condition Management Approach When Treating Brain Injury Important Factors: 1. Early detection and intervention 2. Enforcing the practice of healthy behaviors (difficult due to poor self-control in individuals with TBI) 3. Periodic therapy for physical and cognitive functioning 4. Strategies for self-management

17 Chronic Brain Injury Recent studies indicate that for every adult who is discharged to a rehabilitation facility with a moderate or severe TBI, there are 4 others who go directly home. Benefits of using a chronic condition management model: 1. Improve outcomes 2. Reduce cost

18 Tailoring Rehabilitation Although there is traditionally a progression of recovery following a brain injury it must still be identified as a heterogenous disorder. Rehabilitation needs to allow for tailoring to the individual being served and their environment. As a treating provider one must be able to adapt to the needs of the individual being rehabilitated.

19 Selecting and Applying Research

20 Holistic Approach to TBI Related Rehabilitation Recent research has shown that although standard multidisciplinary treatment provides improvement in individuals with traumatic brain injuries, holistic neuropsychological treatment including intensive cognitive rehabilitation shows greater improvement in areas such as community functioning and life satisfaction. Intensive cognitive rehabilitation included integration of cognitive, interpersonal and functional interventions during therapy whereas standard neurorehabilitation included discipline specific therapies targeting specific areas of difficulty.

21 Tailoring Treatment in Cognitive Rehabilitation Cognitive Rehabilitation: - Tailor treatment to current cognitive functioning as well as goals and activities engaged in prior to the injury - Group therapy to promote real world learning, improve social skills, as well as provide a cost effective method of treatment - Interventions in individual s home/environment to increase generalization

22 Self Awareness and Brain Injury Self awareness is an individual's ability to identify their strengths and weaknesses and the methods in which these abilities translate to activities of daily living. In relation to individuals with brain injuries, impairments in self awareness are associated with unrealistic expectations of recovery, especially when treatment outcomes are unfavorable.

23 Study on Self-Awareness An outcomes study conducted by Kelly et.al (2014) focused on the self-awareness of individuals with moderate to severe brain injury 5 years or more after receiving acute inpatient rehabilitation. After having faced real-world challenges 5+ years post injury an examination of awareness was conducted in emotional, cognitive, neurologic, social, home, and work functioning domains.

24 Results of the Study Results indicate that awareness continues to be an area of concern 5+ years post injury. Awareness and perceptions of functioning are incongruent between subject s and their significant others, subjects often identifying their situations more favorably, in neurologic, cognitive, home, and work domains. Results indicated no significant discrepancy on emotional and social engagement domains demonstrating intact awareness in these areas.

25 Self Awareness and Rehabilitation: Why is it Important? Motivation Cooperation Establish realistic goals Judgement Develop compensatory strategies Therapeutic relationship/alliance

26 Self-Awareness and its Effect on Rehabilitation A lack of self awareness can pose an obstacle to successful rehabilitation and must therefore be assessed regularly in therapy. In order to assess the importance of self-awareness in rehabilitation a survey of expert opinions in the fields of neuropsychology and rehabilitation was investigated in regards to the importance of selfawareness for the course and success of rehabilitation of brain injury as well as the instruments used to measure impairment of self-awareness. 71.2% of participants endorsed self-awareness as an important factor in rehabilitation and 69.3% considered it important for the success of rehabilitation. 7.4% of participants used standardized instruments specifically designed to assess self-awareness; 95.7% of participants using non standardized instruments to assess self awareness.

27 Addressing Self-Awareness in Therapy The use of Mindfulness-Based Stress Reduction can improve self efficacy including the management of emotional and cognitive symptoms as well as increase problem solving skills A study of MBSR application in TBI by Azulay et. al (2013) utilized a A Self-Efficacy Scale for the management of symptoms. Each item of the scale began with how confident are you that Using mindfulness, individuals were able to gauge their abilities more accurately (in other words, self-awareness was improved).

28 Fatigue and Brain Injury One of the most common symptoms reported after a traumatic brain injury is fatigue. It has often been thought that fatigue is a symptom of depression however recent research by Schonberger et. al (2014) found that the reported fatigue of individuals after brain injury is primary fatigue which is a consequence of the structural effects of the brain injury rather than a secondary effect denoting fatigue is caused by depression or daytime sleepiness.

29 Fatigue (cont d) Furthermore, fatigue can result from an individual's effort to deal with the complications of everyday life that result from neuropsychological and physical limitations imposed after a brain injury. Individuals with fatigue often report lower satisfaction with life than peers with less fatigue.

30 Mindfulness-Based Stress Reduction for Mental Fatigue MBSR has been effective in the treatment of individuals suffering from TBI related fatigue. MBSR offers strategies to better assist individuals with TBI in coping with stressful situations often requiring the use of mental energy. MBSR can be used as a non-pharmacological treatment of mental fatigue.

31 Cognitive Energy Scale The Cognitive Energy Scale (CES) was developed by Cicerone et. al (2008) for an intensive cognitive rehabilitation program emphasizing metacognition (self-monitoring and self-regulation) as well as emotional regulation. The CES consisted of a 5 point likert scale used to modify fluctuations in levels of functioning (i.e. cognition, emotion, motivation ) This scale can also be tailored for rehabilitation as a method of selfmonitoring for an individual's level of fatigue

32 Cognitive Energy Scale No Energy Optimal Level Wired of Functioning

33 In Summary Focus was on research findings that supported interventions in the following areas: Holistic rehab Self awareness Cognitive fatigue Mindfulness This is the tip of the iceberg - just to highlight how important it is to use research to guide treatment

34 Areas for future research Standardized instrument of self-awareness that becomes accepted by more rehab professionals More intervention research - continue to refine what works and for whom More outcomes research - transdiciplinary team vs. typical single-service outpt cost/benefit of chronic condition approach

35 Cost Effectiveness of Rehabilitation after Brain Injury A study investigating the long term cost effectiveness of treatments with TBI over a 5 year span indicated that continuous rehabilitation has lower costs and better health outcomes than intermittent rehabilitation. By keeping a person in continuous rehabilitation, problems are monitored and more expensive acute hospitalization stays are reduced, thus reducing overall costs.

36 Reducing Costs by Following Established Guidelines The Brain Trauma Foundation put forth guidelines for pre-hospital and inhospital stays as well as surgical management that have been found to reduce mortality as well as medical, rehabilitation, and societal costs. Pre-hospital, in-hospital, and surgical management guidelines include assessment, treatment, and decision making. Specific guidelines can be found at Use of established guidelines produce: Pre-hospital benefits of- correct identification of TBI, accurate treatment in the ambulance, increased transfer to TBI trauma center In-hospital benefits- reduce amount of days spent in ICU, reduce healthcare costs, decrease possibility of mortality and disability by 30-50%.

37 Reducing Costs (cont d) A cost benefit analysis conducted by Faul et. al (2007) revealed that following the Brain Trauma Foundation guidelines would provide savings of: $262 million for annual medical costs $43 million for annual rehabilitation costs $3.84 billion for lifetime societal costs. It was also estimated that the medical costs of saving per patient was $11,280 whereas savings in societal costs were $164,951

38 Thank You

39 References Andelic, N., Ye, J., Tornas, S., Roe, C., Lu, J., Bautz-Holter, E.,... & Aas, E. (2014). Cost-Effectiveness Analysis of an Early- Initiated, Continuous Chain of Rehabilitation after Severe Traumatic Brain Injury. Journal of neurotrauma,31(14), Azulay, J., Smart, C. M., Mott, T., & Cicerone, K. D. (2013). A pilot study examining the effect of mindfulness-based stress reduction on symptoms of chronic mild traumatic brain injury/postconcussive syndrome. The Journal of head trauma rehabilitation, 28(4), Cantor, J. B., Bushnik, T., Cicerone, K., Dijkers, M. P., Gordon, W., Hammond, F. M.,... & Spielman, L. A. (2012). Insomnia, fatigue, and sleepiness in the first 2 years after traumatic brain injury: an NIDRR TBI model system module study.the Journal of head trauma rehabilitation, 27(6), E1-E14. Centers for Disease Control and Prevention. (2015). Traumatic Brain INjury in the United States: Fact Sheet. Retrieved April 29, 2015, from Cicerone, K. D., Mott, T., Azulay, J., Sharlow-Galella, M. A., Ellmo, W. J., Paradise, S., & Friel, J. C. (2008). A randomized controlled trial of holistic neuropsychologic rehabilitation after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 89(12), Corrigan, J. D., & Hammond, F. M. (2013). Traumatic brain injury as a chronic health condition. Archives of physical medicine and rehabilitation, 94(6),

40 References Faul, M., Wald, M. M., Rutland-Brown, W., Sullivent, E. E., & Sattin, R. W. (2007). Using a cost-benefit analysis to estimate outcomes of a clinical treatment guideline: testing the Brain Trauma Foundation guidelines for the treatment of severe traumatic brain injury. Journal of Trauma and Acute Care Surgery, 63(6), Johansson, B., Bjuhr, H., & Rönnbäck, L. (2012). Mindfulness-based stress reduction (MBSR) improves long-term mental fatigue after stroke or traumatic brain injury. Brain injury, 26(13-14), Kelley, E., Sullivan, C., Loughlin, J. K., Hutson, L., Dahdah, M. N., Long, M. K.,... & Poole, J. H. (2014). Self-awareness and neurobehavioral outcomes, 5 years or more after moderate to severe brain injury. The Journal of head trauma rehabilitation, 29(2), Research America An Alliance For Discoveries in Health. Investment in Research Saves Lives and Money facts about:traumatic Brain Injury. Retrieved May 7, 2015, from Schönberger, M., Herrberg, M., & Ponsford, J. (2014). Fatigue as a cause, not a consequence of depression and daytime sleepiness: A cross-lagged analysis.the Journal of head trauma rehabilitation, 29(5), Winkens, I., Van Heugten, C. M., Visser-Meily, J. M., & Boosman, H. (2014). Impaired self-awareness after acquired brain injury: clinicians' ratings on its assessment and importance for rehabilitation. The Journal of head trauma rehabilitation, 29(2),

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