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BRAIN INJURY professional vol. 16 issue 1

A Special Issue for the 13th World Congress on Brain Injury

Key Considerations in the Management of Traumatic Brain Injury


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Evaluations


BRAIN INJURY professional

vol. 16 issue 1

departments

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Publishers Message 13th World Congress on Brain Injury Awards Obituary Literature of Interest

features

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Disorders of Consciousness: An Update on Diagnosis and Treatment Caroline Schnakers, PhD

20

Concussive Brain Injury: A Brief Primer for Healthcare Professionals Nathan D. Zasler, MD, FAAPM&R, FACRM, BIM-C

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Integrating Resilience-Building into the Neurorehabilitation Process Brigid Waldron-Perrine, PhD • Jean Neils-Strunjas, PhD • Diane Paul, PhD Allison Clark, PhD • Raksha Mudar, PhD • Kacey Maestas, PhD Melissa Duff, PhD • Kathleen T. Bechtold, PhD

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Post-acute Transitional Residential Rehabilitation and Changes in Decision-Making Capacity Margaret Kroese, MSSW • Martin J. Waalkes, PhD, ABPP, CBIST

38

Life Care Planning – An International Perspective

44

Pink Concussions: A New Non-Profit Addressing Sex and Gender Differences in the Brain Injury Community

Barbara Baptiste, MSc, CCRC, CLCP • Angela Kerr, RGN, MA

Katherine Snedaker

Brain Injury Professional is a membership benefit of the North American Brain Injury Society and the International Brain Injury Association

NORTH AMERICAN BRAIN INJURY SOCIETY CHAIRMAN Mariusz Ziejewski, PhD VICE CHAIR Debra Braunling-McMorrow, PhD IMMEDIATE PAST CHAIR Ronald C. Savage, EdD TREASURER Bruce H. Stern, Esq. FAMILY LIAISON Skye MacQueen EXECUTIVE DIRECTOR/ADMINISTRATION Margaret J. Roberts EXECUTIVE DIRECTOR/OPERATIONS J. Charles Haynes, JD MARKETING MANAGER Megan Bell-Johnston GRAPHIC DESIGNER Kristin Odom BRAIN INJURY PROFESSIONAL PUBLISHER J. Charles Haynes, JD EDITOR IN CHIEF Debra Braunling-McMorrow, PhD - USA EDITOR IN CHIEF Nathan Zasler, MD - USA ASSOCIATE EDITOR Juan Arango-Lasprilla, PhD – Spain EDITOR EMERITUS Ronald Savage, EdD - USA DESIGN AND LAYOUT Kristin Odom ADVERTISING SALES Megan Bell-Johnston EDITORIAL ADVISORY BOARD Nada Andelic, MD - Norway Philippe Azouvi, MD, PhD - France Mark Bayley, MD - Canada Lucia Braga, PhD - Brazil Ross Bullock, MD, PhD - USA Fofi Constantinidou, PhD, CCC-SLP, CBIS - USA Gordana Devecerski, MD, PhD - Serbia Sung Ho Jang, MD - Republic of Korea Cindy Ivanhoe, MD - USA Inga Koerte, MD, PhD - USA Brad Kurowski, MD, MS - USA Jianan Li, MD, PhD - China Christine MacDonell, FACRM - USA Calixto Machado, MD, PhD - Cuba Barbara O’Connell, OTR, MBA - Ireland Lisandro Olmos, MD - Argentina Caroline Schnakers, PhD - USA Lynne Turner-Stokes, MD - England Olli Tenovuo, MD, PhD - Finland Asha Vas, PhD, OTR - USA Walter Videtta, MD – Argentina Thomas Watanabe, MD – USA Alan Weintraub, MD - USA Sabahat Wasti, MD - Abu Dhabi, UAE Gavin Williams, PhD, FACP - Australia Hal Wortzel, MD - USA Mariusz Ziejewski, PhD - USA EDITORIAL INQUIRIES Managing Editor Brain Injury Professional PO Box 131401, Houston, TX 77219-1401 Tel 713.526.6900 Email: mbell@hdipub.com Website: www.nabis.org ADVERTISING INQUIRIES Megan Bell-Johnston Brain Injury Professional HDI Publishers PO Box 131401, Houston, TX 77219-1401 Tel 713.526.6900 Email: mbell@internationalbrain.org NATIONAL OFFICE North American Brain Injury Society PO Box 1804, Alexandria, VA 22313 Tel 703.960.6500 / Fax 703.960.6603 Website: www.nabis.org ISSN 2375-5210 Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2019 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 77219-1400, Tel 713.526.6900, Fax 713.526.7787, e-mail mbell@hdipub.com.

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Publisher's Message This special issue of Brain Injury Professional is being published to coincide with the 13th World Congress on Brain Injury, held in the eclectic and culturally diverse city of Toronto, Canada, from March 13-16, 2019. As this issue goes to press, the Toronto Congress is shaping up to be the International Brain Injury Association’s largest and most educationally significant event ever held. Congratulations are certainly in order to Nora Cullen for organizing this exceptional Congress. Nora, along with her colleagues Paul Comper and Deirdre Dawson, and an outstanding International Planning Committee, have put together a broad and varied program that will no doubt be well received by Congress delegates who will be traveling to Canada from over 40 different countries. While in Toronto, Congress participants will learn from an internationally recognized faculty who will present on a broad range of topics relating to the development of effective treatment interventions and restoring persons with brain injury to optimal levels of functioning. In addition to the myriad of invited talks from luminaries in the field, participants will also have the opportunity to hear talks and view posters that were accepted through IBIA’s peer-reviewed Call for Abstracts process. And, as is the case at all World Congress events, there will be ample time for socializing, visiting with exhibitors, networking with colleagues and forming new friendships. Chas Haynes, JD

The Congress will also provide the stage for IBIA’s biennial awards, including the Jennett Plum Award for Distinguished Scientific Contributions to the Field of Brain Injury to John Whyte, the Young Investigator Award for Early Career Contributions to the Field of Brain Injury Science to Aurore Thibaut, and the IBIA Early Career Investigator Award to Miriam Beauchamp. New this year, the North American Brain Injury Society has established a new award in memory of NABIS’s founder, Robert D. Voogt, and the inaugural recipient will be Tatyana Mollayeva. You can read more about each of the award winners on page 8 in this issue.

For over two decades, the World Congress on Brain Injury has been a platform for communication and exchange on a broad spectrum of brain injury research – from mild to severe and from vascular to acquired injuries. Similarly, this issue of Brain Injury Professional features articles on a range of different topics, yet collectively represent key considerations shaping the future of brain injury rehabilitation. Leading off this special issue, Carolyn Schnakers describes the dramatic advances in the assessment of Disorders of Consciousness that are leading to exciting new collaborations between those working to improve outcomes for this marginalized population. Nathan Zasler then provides a primer on Concussive Brain Injury, a topic that still remains poorly understood, even among healthcare professionals. Brigid Waldron-Perrine, et al, then offers a fascinating article on the key role that integrating resiliencebuilding can have in the overall neurorehabilitation process. Margaret Kroese and Martin Waalkes then provide a thorough discussion of an intensive post-acute transitional residential rehabilitation model that focuses on functional recovery and disability mitigation. Mindful that restoring a person to their most independent level of functioning is the ultimate goal of neurorehabilitation, Barbara Baptiste and Angela Kerr share an international perspective on planning for and anticipating the resources required to promote function and performance over a person’s lifespan. Last but certainly not least, Katherine Snedaker describes Pink Concussions, a new, much needed non-profit organization addressing sex and gender differences in the brain injury community. We hope you enjoy this special issue of Brain Injury Professional and the 13th World Congress on Brain Injury!

Author Bio Chas Haynes is the publisher of Brain Injury Professional Magazine. He and his family have been active in brain injury advocacy since 1979, when his sister Bonnie was injured in a car accident during her junior year at the University of Texas. Chas has over 25 years of experience in the leadership and operations management of non-profit medical associations, foundations and professional societies. Throughout his career, his primary focus has been in the area of acquired neuro-trauma, and more recently in the field of neuro-oncology. Chas holds a law degree from the South Texas College of Law, located in Houston, Texas.

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CONGRATULATIONS,

DR. WHYTE, ON BEING THE

2019 RECIPIENT OF THE

JENNETTE-PLUM AWARD John Whyte, MD, PhD, Founding Director, Moss Rehabilitation Research Institute

Look Forward. See Progress. Challenge Accepted.


13th World Congress on Brain Injury Awards Jennett Plum Award for Distinguished Scientific Contributions to the Field of Brain Injury John Whyte Dr. John Whyte is the Director of the Moss Rehabilitation Research Institute (MRRI), Director of Attention Research (MRRI) and Director of Brain Injury Research, Drucker Brain Injury Center, MossRehab. In addition to his work in MRRI, Dr. Whyte is a Staff Physiatrist for Einstein Practice Plan, Inc. He has teaching appointments at Jefferson Medical College and Temple University School of Medicine. He has received funding for his research from the National Institutes of Health (NIH), the Department of Education/National Institute on Disability and Rehabilitation Research (NIDRR), the Department of the Army and the James McDonnell Foundation. He has also received seed money grants from the Albert Einstein Society and Moss Rehabilitation Research Institute Peer Review Committee. Dr. Whyte has an extensive list of published research. His work has appeared in such publications as Neuropsychologia, Brain, Journal of the International Neuropsychological Society, Archives of Physical Medicine and Rehabilitation, American Journal of Physical Medicine and Rehabilitation, Journal of Head Trauma Rehabilitation, Neurology, Journal of Neurotrauma, and several others. He has also written numerous book chapters. He received his medical degree and a PhD in Psychology from the University of Pennsylvania. He completed a residency in Physical Medicine and Rehabilitation at University of Minnesota Hospital, and a fellowship in Neurotrauma at New England Medical Center Hospitals and Greenery Rehabilitation and Skilled Nursing Center. He has received numerous awards and honors for his outstanding research, lectureship, and work as a pioneer in the field of brain injury rehabilitation, from organizations such as the American Congress of Rehabilitation Medicine, the Association of Academic Physiatrists, and the Brain Injury Association of Pennsylvania.

Young Investigator Award for Early Career Contributions to the Field of Brain Injury Science Aurore Thibaut Dr. Aurore Thibaut’s PhD studies were with the Coma Science Group under the direction of Prof. Steven Laureys, at the University of Liege, Belgium, where she currently has a FNRS post-doctoral position. She obtained her masters degree in Physical Therapy and Rehabilitation with a specialization in Neuroscience from the University of Liege in Belgium. Her research focuses on brain direct current stimulation in patients with disorders of consciousness trying to improve brain plasticity and facilitate the recovery of these patients. She is also working with neuroimaging and electrophysiology to objectify brain plasticity linked to stimulation. Additionally, she is on the leadership team for the treatment subgroup of the IBIA DOC-SIG with Drs. Carolyn Schnakers and Nathan Zasler serving as chairs. She closely collaborates with Prof. Filipe Fregni and the Spaulding Neuromodulation Centre, Harvard Medical School, Boston, with working on new non-invasive brain stimulation techniques to improve brain function by enhancing cortical activity and connectivity in diverse conditions such as concussion and chronic pain.

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IBIA Early Career Investigator Award Miriam Beauchamp Dr. Miriam Beauchamp is Associate Professor in developmental neuropsychology at the University of Montreal (Canada) where she leads the ABCs developmental neuropsychology laboratory. She is also a researcher at the Ste-Justine Hospital Research Center and Adjunct Professor in the Department of Neurology and Neurosurgery at McGill University. Since 2009, she has held a Career Development Award from the Quebec Health Research Funds (FRQS) for her research program in pediatric traumatic brain injury. In 2015, she was presented with the International Neuropsychological Society Early Career Award (2015) in recognition for her work in the area of pediatric TBI. Her research is currently funded by three federal Canadian agencies (NSERC, SSHRC, CIHR), as well as by the Quebec Health Research Funds (FRQS). In 2016, she was awarded a CIHR Foundations grant for a study focused on TBI during the preschool years. Dr. Beauchamp’s clinical research program focuses specifically on studying advanced neuroimaging techniques for improving lesion detection after childhood TBI and measuring cognitive and social outcomes. A particular interest within her TBI research program is to improve our understanding the consequences of TBI when sustained before the age of six years (“preschool TBI”). The information gleaned from these studies guides the development of novel and ecological assessment techniques and targeted interventions based on virtual reality and intelligent video gaming for children with brain injury at-risk for cognitive, social or behavioral problems.

The Robert D. Voogt NABIS Founders Award Tatyana Mollayeva Dr. Tatyana Mollayeva received her medical degree from the Moscow Medical Academy and worked for the Ministry of Health in Central Asia. Upon immigrating to Canada, she was trained in sleep medicine and completed her PhD on the topic of sleep dysfunction in traumatic brain injury. She is currently a postdoctoral research fellow working with Professor Angela Colantonio on the topics related to injury prevention, cognitive outcome assessment, gender and brain injury comorbidity, incorporating sleep function in all research hypotheses.

Since her entry into research in 2010, Dr. Mollayeva has authored more than thirty peer reviewed papers, three book chapters, and a book on polysomnography. Her contributions have been recognized internationally by the early career Award from the American Academy of Rehabilitation Medicine and the Elio Lugaresi Award for Education from the World Sleep Congress.

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Disorders of Consciousness: An Update on Diagnosis and Treatment Caroline Schnakers, PhD

Introduction Fifty years ago, scientific research on disorders of consciousness was very limited. Patients with severe brain injury, who are most likely to present with impaired consciousness during recovery, often died. In the fifties, the introduction of artificial breathing changed everything. The lives of these patients could be extended even in cases of severe lesions to brain areas supporting vital functions. Clinicians started to face patients who were “alive” but not reactive to their surroundings. In this context, a new categorization emerged for such patients, namely, the disorders of consciousness (DOC). In the sixties, Plum and Posner defined for the first time a clinical entity called “coma” as a pathological state marked by severe and prolonged dysfunction of vigilance and consciousness [1]. In 1972, the term “vegetative state” (VS) was first introduced by Jennet and Plum to describe those patients who were awake (eye opening) but not conscious (no oriented or voluntary response) [2]. A few years later, Jennett and Teasdale developed the well-known Glasgow Coma Scale for assessing the progress of patients with severe brain injury in intensive care units [3]. Finally, in 2002, formal diagnostic criteria for the “minimally conscious state” (MCS) and emergence from MCS were published in the journal Neurology to account for those patients who start to show signs of consciousness in a reproducible but fluctuant way [4]. Since the definition of these clinical entities, the number of scientific studies performed on patients with DOC has dramatically increased. FIGURE 1 shows that only 15 articles were published about VS from 1975 to 1985 as compared to 446 articles between 2010 and 2015. The emergence of functional neuroimaging techniques (such as positron emission tomography – PET and functional magnetic resonance imaging – fMRI) opened new opportunities to study brain activity in patients with DOC. The use of those techniques allowed to improved ability to delineate neural processes linked to consciousness. We know now that most patients in VS present with partial activation of sensory networks and impaired functional connectivity contrary to patients in MCS. Low-level primary cortical activity seems to be isolated from higher-level associative cortical activity, and recent findings suggest that long distance connectivity (e.g., between frontal and temporal areas) is more impaired than short distance connectivity (e.g., areas within the temporal gyrus) [5].

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The reemergence of thalamo-cortical connections has also been associated with recovery of consciousness; whereas, thalamic atrophy has been associated to chronic DOC [5,6]. The brain activity in some patients with VS may nevertheless differ from findings suggesting altered brain activity. In 2006, Owen and colleagues reported the landmark case of a young woman who was clinically diagnosed as being in a VS. Yet, when performing a mental imagery task during an fMRI scan, her brain activity was similar to the pattern of activity observed in healthy controls [7]. Since then, other case studies have reported similar observations suggesting an underestimation of cognitive processing and the existence of a “covert cognition” in a minority of patients diagnosed as being in a VS. In this review, we will go through what our current knowledge is when dealing with DOC and how, for now, we can diagnose and treat this challenging population. FIGURE 1: Publications on disorders of consciousness between 1975 and 2015

Figure legend. Pubmed search using the terms: vegetative state, minimally conscious state, consciousness and awareness. The results for the vegetative state are presented in light grey while the results for the minimally conscious state are presented in dark grey.


About diagnosis in DOC Diagnostic Accuracy Differentiating MCS from VS can be challenging as voluntary and reflexive behaviors may be difficult to distinguish and subtle signs of consciousness may be missed. The development of diagnostic criteria for MCS [8] should have reduced the incidence of misdiagnosis relative to the rates reported before these criteria were established [9-10]. However, several studies comparing clinical non-standardized observation to examination with a standardized behavioral scale found that around 40% of patients believed to be in VS were misdiagnosed [11-12].

These procedures detect relatively gross changes in behavior and are not designed to distinguish random or reflexive behaviors from those that are volitional. The Full Outline of UnResponsiveness score (FOUR score) has greater sensitivity than the GCS for detecting different levels of brainstem function in the acute stage of severe brain injury [15], but because the FOUR score does not include a systematic assessment of signs of consciousness, it may not capture the transition from VS to MCS [16-17]. Standardized rating scales have been devised for chronic disorders of consciousness (DOC) to address these shortcomings, to assess a broad range of neurobehavioral functions and to rely on fixed administration and scoring procedures.

Standardized neurobehavioral assessment measures tailored for This high rate of misdiagnosis likely reflects several sources of DOC patients include the Coma Recovery Scale-Revised (CRS-R) [18], variance. Variance in diagnostic accuracy may result from biases the Coma-Near Coma Scale (CNC) [19], the Western Neurosensory contributed by the examiner, patient and environment. Examiner Stimulation Profile (WNNSP) [20], the Western Head Injury Matrix error may arise when the range of behaviors sampled is too (WHIM) [21] and the Sensory Modality and Rehabilitation Technique narrow, response-time windows are over- or under-inclusive, (SMART) [22]. Although item content varies across measures, all criteria for judging purposeful responses are poorly defined and evaluate behavioral responses to a variety of auditory, visual, motor examinations are conducted too infrequently to capture the full and communication prompts. All of these instruments have been range of behavioral fluctuation. The use of standardized rating shown to have adequate reliability and validity, however, there scales offers some protection against is considerable variability in their these errors, although failure to psychometric integrity and clinical adhere to specific administration and utility. Of these measures, the scoring guidelines may jeopardize CRS-R is the only one that directly diagnostic accuracy. The second incorporates the existing diagnostic source of variance concerns the The knowledge we have criteria for coma, VS and MCS into the patient. Fluctuations in arousal accumulated (and that we are level, fatigue, subclinical seizure administration and scoring scheme activity, occult illness (e.g., metabolic still accumulating) is starting (Table 1). Giacino and colleagues and infectious encephalopathies), (2004) compared the CRS-R to the to have real translational ability pain, cortical sensory deficits (e.g., DRS in 80 patients with DOC and to patient assessment and cortical blindness/deafness), motor found that although the two scales impairment (e.g., generalized treatment. If this exponential produced the same diagnosis in 87% hypotonus, spasticity or paralysis) or of cases, the CRS-R identified 10 increase of publication and cognitive disturbance (e.g., aphasia, patients in MCS who were classified apraxia, agnosia) also decrease interest continues, it will soon as VS on the DRS [23]. There were the probability of observing signs lead to even more substantial no cases in which the DRS detected of consciousness [13]. Finally, the features of MCS missed by the changes in the way we perceive environment in which the patient is CRS-R. Schnakers and colleagues evaluated may bias the assessment. the role of neurorehabilitation (2006) administered the GCS, CRS-R Paralytic and sedating medications, and the FOUR score to 60 patients in those patients with DOC. restricted range of movement with acute (i.e., trauma center) and stemming from restraints and subacute (i.e., rehabilitation center) immobilization techniques, poor brain injury resulting in disturbance positioning and excessive ambient in consciousness [16]. Among the 29 noise / heat / light can all decrease or distort voluntary behavioral patients diagnosed with VS on the responses. GCS, four were found to have at least one sign of consciousness on the FOUR. However, the CRS-R detected evidence of MCS in 7 Examiner bias can be greatly minimized by using standardized additional patients diagnosed with VS on the FOUR. All seven of tools, but diagnostic accuracy is not always within the examiner’s these patients showed sustained oriented eye movements, a clinical control. This is particularly troubling as clinical management, from sign heralding recovery from VS. rehabilitation to end-of-life decision-making often depends on the behavioral observations of the examiner. In 2010, the American Congress of Rehabilitation Medicine Behavioral scales In light of the behavioral fluctuations that commonly occur in this population, evaluations should be repeated over time and measures should be sensitive enough to detect subtle but clinically meaningful changes in neurobehavioral responsiveness. Conventional bedside assessment procedures and neurosurgical rating scales such as the Glasgow Coma Scale [14] (GCS) have limited utility when used to monitor progress in patients with prolonged disturbance in consciousness.

published the results of the first evidence-based review of neurobehavioral rating scales designed specifically for patients with DOC [24]. Six of the 13 scales that qualified for the review were recommended for use in clinical practice. The CRS-R received the strongest recommendation (“minor reservations�), based on its performance across a panel of psychometric quality indicators. The CRS-R is also one of the Traumatic Brain Injury (TBI) Common Data Elements (CDE) suggested by the US National Institute of Neurological Disorders and Stroke (NINDS) and the method of choice for monitoring recovery of consciousness in TBI research [25-26].

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Table 1. Coma Recovery Scale- Revised record sheet. Table 1.1:Coma Recovery Scalerecord sheet. TABLE Coma Recovery ScalRevised - Revised record sheet. AUDITORY FUNCTION SCALE 4 Consistent Movement to Command * AUDITORY FUNCTION SCALE Reproducible Movement to Command 43 -- Consistent Movement to Command * * 2 Localization to Sound 3 - Reproducible Movement to Command * Auditory Startle 21 -- Localization to Sound None Startle 10 -–Auditory 0VISUAL – NoneFUNCTION SCALE 5 - Object Recognition * VISUAL FUNCTION SCALE 4 Object Localization: 5 - Object Recognition *Reaching * PursuitLocalization: Eye Movements * 43 -- Object Reaching * FixationEye * Movements * 32 -- Pursuit Visual Startle 21 -- Fixation * 0 – None Startle 1 - Visual 0MOTOR – NoneFUNCTION SCALE 6 - Functional Object Use t MOTOR FUNCTION SCALE 5 Automatic Motor Response * 6 - Functional Object Use t 4 Object Manipulation * 5 - Automatic Motor Response * Localization to Noxious 43 -- Object Manipulation * Stimulation * Flexion Withdrawal 32 -- Localization to Noxious Stimulation * Abnormal Posturing 21 -- Flexion Withdrawal 0 None/Flaccid 1 - Abnormal Posturing FUNCTION SCALE 0OROMOTOR/VERBAL - None/Flaccid 3 - Intelligible Verbalization * OROMOTOR/VERBAL FUNCTION SCALE Vocalization/Oral Movement 32 -- Intelligible Verbalization * Oral Reflexive Movement 21 -- Vocalization/Oral Movement 0 – None 1 - Oral Reflexive Movement SCALE 0COMMUNICATION – None t 2 - Functional: Accurate COMMUNICATION SCALE t Non-Functional: Intentional * 21 -- Functional: Accurate None 10 -–Non-Functional: Intentional * 0AROUSAL – None SCALE 3 - Attention * AROUSAL SCALE Eye Opening 32 -- Attention * w/o Stimulation Eye Opening Opening w/o withStimulation Stimulation 21 -- Eye 0 – Unarousable 1 - Eye Opening with Stimulation 0 – Unarousable

Denotes MCS *; Denotes emergence from MCS t Denotes MCS *; Denotes emergence from MCS t

More specialized behavioral assessments Individualized Quantitative Behavioral Assessment (IQBA) Clinicians involved in the care of MCS patients often encounter situations in which the patients’ behavioral responses are ambiguous or occur too infrequently to clearly discern their significance. These problems are often due to injury-related sensory, motor and arousal deficits. For this reason, a technique referred to as Individualized Quantitative Behavioral Assessment (IQBA) was developed by Whyte and colleagues [27-28]. IQBA is intended to address casespecific questions using individually tailored assessment procedures, operationally defined target responses and controls for examiner and response bias. Once the target behavior (e.g., commandfollowing, visual tracking) has been operationalized, the frequency of the behavior is recorded following administration of an appropriate command, following an incompatible command and during a rest interval. Data are analyzed statistically to determine whether the target behavior occurs significantly more often in one condition relative to other conditions. For example, when the frequency of observed behaviors is greater during the “rest” condition relative to the “command” condition, it is likely that the behaviors represent random movement rather than a purposeful response to command.

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IQBA can be applied across a broad range of behaviors and can address many different types of clinical question. McMillan (1996) employed an IQBA protocol to determine whether a minimally responsive, TBI patient could reliably communicate a preference concerning withdrawal of life-sustaining treatment [29]. Responses to questions were executed using a button press. Results indicated that the number of affirmative responses to “wish to live” questions was significantly greater than chance suggesting that the patient could participate in end-of-life decision-making. McMillan’s findings were subsequently replicated in a second IQBA assessment conducted by a different group of examiners [30]. Pain Assessment and the Nociception Coma Scale-Revised Providing information as to whether a patient with DOC is in pain is important to both clinicians and families. However, self-report is not an option in patients with DOC because of the inability to communicate. The Nociception Coma Scale (NCS) is the first standardized tool developed to assess nociceptive pain in patients with severe brain injury. The first version of the NCS consisted of four subscales assessing motor, verbal, visual responses as well as facial expression [31]. The NCS has been validated in patients in intensive care, inpatient neurology/neurosurgery units, rehabilitation centers and nursing homes. In comparison to other pain scales developed for non-communicative patients, the NCS has broader coverage and better diagnostic sensitivity, suggesting that it is an appropriate assessment tool for this population. The visual subscale was subsequently deleted since further analysis showed that, following the application of noxious versus non-noxious stimuli, significantly higher scores were obtained on the motor, verbal and facial expression subscales but not on the visual subscale [32]. Recent findings have also shown a correlation between NCS-R total scores and the activity in the anterior cingulate cortex (related to pain unpleasantness), reflecting further the relevance of this scale when monitoring pain in patients with DOC [33]. The scale has demonstrated good reliability and validity, and currently exists in various languages (i.e., French, English, Italian, Dutch and Thailandese) [32, 34-36]. Finally, the interest of the NCS-R in assessing pain in a clinical setting has been investigated recently [37]. Thirty-nine patients with potential painful conditions (e.g., due to fractures, decubitus ulcers or spasticity) were assessed with the NCS-R and the GCS during nursing cares before and after the administration of an analgesic treatment tailored to each patient's clinical status. The NCS-R scores, but not the GCS scores, were statistically lower during treatment when compared to the scores obtained before treatment, providing further evidence that the NCS-R is an interesting clinical tool specifically tailored for pain management. Paramedical techniques: complementary diagnostic tool Thanks to the neuroimaging findings of the past decade, new techniques and paradigms aiming to improve the assessment of patients with DOC started to emerge. Stender and colleagues have demonstrated, in a large sample, the utility of PET scan when detecting conscious brain activity based on the preservation of fronto-parietal networks. The technique allowed these researchers to correctly identify 93% of patients in MCS and to correctly predict consciousness recovery in 74% of patients with DOC [38]. Based on previous findings on functional connectivity, Casali and colleagues proposed the perturbational complexity index (PCI) as a measure of effective connectivity by calculating the spatial and temporal response of the brain to a perturbation induced by transcranial magnetic stimulation. The PCI distinguishes alert, healthy volunteers from volunteers who were anesthetized, sedated and asleep, and differentiated patients who were conscious (lockedin syndrome, MCS and emerged from MCS) from those who were unconscious (VS) [39].


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Finally, a series of fMRI and electroencephalography-based brain computer Interfaces are under development to detect “VS” patients with covert cognition [40]. Brain computer interfaces are motorindependent systems that use brain activity to drive external devices or computer interfaces. These systems could represent a complementary tool for detecting command-following and for allowing complex ideas to be communicated to the outside world despite severe motor dysfunctions. The development of these interfaces is based on the idea that patients in VS who respond to active paradigms have preserved cognition. Such an idea has recently been challenged and should be further investigated [41]. Patients with covert cognition A different group of patients who are unable to show any behavioral sign of consciousness but are able to respond mentally to active neuroimaging or electrophysiological paradigms has been identified more recently. In 2006, Owen and colleagues reported the case of a non-communicative young woman with severe brain injury. When performing a mental imagery task, her brain activity was similar to the one observed in healthy controls [42]. Following this study, Monti and colleagues have tested 54 patients using the same paradigm. Only two patients diagnosed as being in a VS and three patients diagnosed as being in a MCS were able to perform the task (9% of the group). One of these patients was able to answer ‘yes’ or ‘no’ to autobiographical questions by using either motor or spatial imagery [43]. Since then, a series of studies has been published about the detection of willful brain activity in patients diagnosed as being in a VS, confirming the existence of patients with covert cognition [44]. It is tempting to think that these patients are with a severe form of LIS. However, unlike LIS patients, patients with covert cognition present impaired connectivity between subcortical and cortical, such as connections between the thalamus and the primary motor cortex which will prevent the execution of willful motor actions [45]. According to a recent meta-analysis, covert cognition seems rare in VS (14% of cases) but is more frequent in patients with traumatic brain injury than non-traumatic brain injury (32% vs 19%) [43]. Future studies will nevertheless have to be multi-centric in order to gather a sufficient amount of data to establish the profile of this possibly new clinical entity.

About treatment in DOC Very few options exist for patients with disorders of consciousness. However, The growing understanding of the biology of disorders of consciousness has led to a renaissance in the development of therapeutic interventions for patients with disorders of consciousness. High-quality evidence is emerging for pharmacological (i.e. Amantadine) and neurostimulatory (i.e. transcranial direct current stimulation) interventions, although further studies are needed to delineate preconditions, optimal dosages, and timing of administration. Other exciting new approaches (e.g. low intensity focused ultrasound) still await systematic assessment. Behavioral option Numerous studies investigated the impact of sensory stimulation programs on the recovery of patients with disorders of consciousness (DOC). However, most studies are non-controlled designs or descriptive case reports. The results from a small number of studies which use randomized-controlled design showed contradictory results and do not confirm the efficacy of sensory stimulation programs [46].

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Besides an insufficient description of the program applied, the types and dosage of interventions but also the primary outcomes examined differed, making any study comparison difficult [47]. Additionally, due to sample size, none of these studies could ensure dissociation between improvements due to sensory stimulation and those due to natural recovery. More recently, a study using an ABAB time-series design investigated the impact of sensory stimulation program on consciousness recovery in 29 chronic patients. Higher CRS-R responses (particularly in verbal and arousal subscales) were obtained in the end of the sensory stimulation program versus its beginning. Additionally, in 3 patients who underwent 4 MRI scans (i.e., ABAB), the findings revealed higher activation during treatment in brain areas related to consciousness (i.e., the right middle frontal gyrus, the right superior temporal gyrus and the bilateral ventroanterior thalamic nucleus). Such findings indicate treatment-related changes at a behavioral as well as at a neuronal level and stress that supplementing behavioral measures with neuroimaging may expand our understanding of the impact of sensory stimulation in such complex populations [48]. Besides sensory stimulation program, music therapy has also been presented as another way to stimulate patients. Music has a well-known therapeutic effect on patients with progressive brain disease (such as Alzheimer or Parkinson) or neurodevelopmental disorder (such as autism) and might be a promising tool when treating patients with severe brain injuries [49-50]. Music therapy interventions use live music that can be modified according to patient responsiveness “in the moment”. Musical parameters (e.g. tempo, rhythm) are manipulated according to changes in a patient’s attention or arousal. Previous studies with DOC populations suggest that music enhanced arousal and attention when compared to white noise or disliked music or when compared to a control non-musical auditory stimulus, suggesting a potential impact of music therapy on consciousness recovery [51-52]. Research into music therapy with DOC has however been limited due to the lack of behavioral measures that are sensitive to the complex needs of this population [53]. For this reason, single subject designs and case reports prevail, reporting on behavioral and neurophysiological outcomes. Pharmacological option Amantadine. A double-blind, randomized, placebo-controlled multicenter study has recently been performed and constitutes so far the highest level of evidence for the use of Amantadine in promoting recovery of consciousness in patients with traumatic brain injuries [54]. The intervention was of six weeks duration and included 184 VS or MCS subacute patients who were randomly assigned to receive Amantadine or placebo treatment. Functional recovery (e.g., recovery of consistent response to commands, intelligible verbalization, reliable yes-no communication, functional use of objects) occurred earlier in the Amantadine group than in the placebo group. Exposure to Amantadine did not increase the risk of adverse events (e.g., seizures) in that study. Using timeseries designs, preliminary electrophysiological studies seem to indicate a modulation of the alpha frequency bands [55-56] while one neuroimaging study showed a modulation of fronto-temporoparietal and sensori-motor networks in response to treatment [57]. According to the mesocircuit model, dopaminergic agents increase thalamic tonus firing (particularly, the central thalamic nuclei) via the striato-thalamic projections [58]. Most of these studies only involved patients with traumatic brain injury. A controlled prospective trial is therefore needed to fully determine the effect of Amantadine on non-traumatic brain injuries. Zolpidem. Two double-blind placebo-controlled study showed significant recovery such as increased movement, social interaction, command following, and functional object use but only in around 5% of a large sample of chronic patients with DOC [59-60].


In a last study, the level of consciousness and the perfusion in braindamaged areas were better in patients without brainstem injuries [61]. Electrophysiological studies seemed to show an increase in beta frequencies and an decrease in alpha frequencies [62-63] while neuroimaging studies showed changes a widespread fronto-parietal network and the limbic system (i.e., orbitofrontal cortex) [64-65] after Zolpidem intake. According to the mesocircuit model, Zolpidem could interact with the limbic loops of the brain and modulate subcortical connections, more particularly the globus pallidus, which would bring the thalamocortical activity back to normal and would allow a recovery of consciousness [58]. Other drugs such as Levodopa [66-68] and Apomorphine [69-71] which are dopaminergic agents and Baclofen which is an agonist agent of the GABAB receptors [72-74] have shown some beneficial effects on consciousness recovery in patients with severe brain injuries. Nevertheless, none of these studies formally controlled for natural recovery.

Neuromodulation option Neurostimulation has been increasingly studied in the past 10 years. Schiff and co-workers have observed treatment-related behavioral improvements in a chronic post-traumatic MCS patient treated with deep brain stimulation (DBS) of thalamic intralaminar nuclei [75]. Deep brain Stimulation - DBS is a FDA approved pulse generator which sends current to a brain electrode that delivers electrical and magnetic impulses (which can be exciting or inhibiting) to a targeted brain region [76]. DBS in DOC patients aims at stimulating thalamocortical-loops across fronto-striatal regions responsible for cognitive functions such as attention, memory, language, or executive functions. In that study, behavioral changes such as response to command, oral feeding and functional communication were observed. On the contrary to previous DBS studies, the authors have been able to relate with certainty those improvements to the treatment using a double-blind time-series design in a chronic patient (6 years post-injury), decreasing chances of bias due to spontaneous recovery. Even though this study shows the effect of DBS on consciousness recovery, it has to be reproduced in a larger sample. Moreover, DBS remains a very invasive technique requesting the intervention of neurosurgery, which may be risky for such vulnerable population [75]. Alternative non-invasive neurostimulation techniques have been tested such as transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS). TMS uses magnetic stimulation via a magnetic field generator, or "coil", which is placed near the head of the patient receiving the treatment and is thought to induce action potentials and firing of otherwise resting neurons. TMS of the primary motor cortex has been applied in a traumatic MCS patient 5 years after injury using a time-series design in which the examiner was blinded to the stimulation received (either TMS or median nerve stimulation – MNS- as placebo). Behavioral changes such as response to command, object reaching and object manipulation have been observed after TMS sessions (but not after MNS sessions) [77]. More recently, Thibaut and co-workers have investigated the interest of tDCS in 55 patients with disorders of consciousness (i.e., VS and MCS) using a double-blind shamcontrolled crossover design [78]. tDCS represents a safe, cheap and user-friendly treatment that can be easily implemented in a rehabilitation setting. It is thought to induce membrane potential changes, modulations of NMDA receptors efficacy as well as modification of ion channels (e.g., calcium) by decreasing or increasing the action potential threshold using a weak direct current (usually ≤ 2mA) between two electrodes, the anode (i.e., excitatory) and the cathode (i.e., inhibitory) [79-80].

In this study, one single tDCS and sham session have been applied over the dorsolateral prefrontal cortex. Patients have shown behavioral changes (e.g., response to command and visual pursuit) only after tDCS but those changes were mainly presented by MCS patients. The authors also did not find a difference of functional outcome at one year between responders and non-responders and concluded that short-duration tDCS (i.e., one session) transiently improves consciousness [78]. Another study aiming to evaluate the long-term effect of tDCS was performed in chronic MCS patients who received sham and anodal tDCS 5 days per week for a week. The level of consciousness (i.e., CRS-R total score) improved in 56% of the patients after 5 days of anodal tDCS (but not after sham tDCS) and lasted for at least a week after stimulation [81]. Finally, using multi-modal neuroimaging analyses, Thibaut and co-workers showed that consciousness improvements after tDCS are related to grey matter integrity and/or residual metabolic activity in the thalamus, the medial prefrontal cortex and the precuneus, which corroborates the critical role of cortico-thalamic loop and mesocircuit model in consciousness recovery [58, 82]. Finally, a recent case study reported the first use of thalamic low intensity focused ultrasound (LIFU) stimulation as a neurostimulatory intervention in an acute DOC patient recovering from severe TBI [83]. LIFU employs low-energy sound waves to allow noninvasive, transient, and well tolerated excitatory or inhibitory stimulation of a target region (potentially) anywhere in the brain. The neurostimulatory effects of LIFU on neural tissue have long been shown in in-vitro tissue cultures, nonhuman animal models, and very recently, in humans [84]. Although the exact cellular and molecular mechanisms remain unclear, a popular hypothesis proposes that conformational changes in mechanosensitive membrane-spanning proteins, because of sound-induced tissue compression, tension, and/or sheering, lead to transmembrane ionic fluxes, which in turn, lead to changes in the membrane-resting potential and activation of ionotropic voltage-gated (Naþ, Caþþ, and Kþ) channels [85-86]. LIFU has several advantages as compared with other neurostimulatory approaches. Like DBS (and unlike tDCS and TMS), it is capable of directly stimulating thalamic tissue. Conversely, liketDCS and TMS (and unlike DBS), it is entirely noninvasive. Furthermore, LIFU stimulation produces no detectable sound or sign that it is being delivered, thereby effectively blinding participant and experimenter. In the one reported case in which thalamic LIFU was used in a postcoma patient (who fulfilled behavioural criteria for MCS), increased behavioural responsiveness was observed within 24h postsonication, as assessed with the CRS-R. By 3 days, the patient had regained language comprehension and appeared fully oriented [83]. This result was expected based on DBS thalamic stimulation in DOC patients and LIFU thalamic stimulation in rodents, which has been shown to reduce the time-to-emergence of voluntary movement after ketamine–xylazine anaesthesia[86], and is in line with the mesocircuit model. Nonetheless, spontaneous recovery should not be ruled out.

Conclusion Even though it remains difficult to manage patients with severe brain injury, the field is in a rapid state of evolution. Ten years ago, everything was about characterizing and understanding consciousness processing. Clinicians would mainly collaborate with neuroscientists and help them to recruit to improve theoretical understanding, knowing it would not directly impact their practice. Now, the knowledge we have accumulated (and that we are still accumulating) is starting to have real translational ability to patient assessment and treatment. If this exponential increase of publication and interest continues, it will soon lead to even more substantial changes in the way we perceive the role of neurorehabilitation in those patients with DOC.

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In this context, recent initiatives have been created to develop international networks of collaboration, i.e., the American Congress of Rehabilitation Medicine has created a special interest group on DOC and the International Brain Injury Association is currently doing the same to expend such networks worldwide. This is truly an exciting time for the field, full of hope but also full of challenges. Assessment and treatment options need a lot more development and validation to be able to one day be implemented in clinical practice. In an experimental setting, the study of this population is also extremely challenging. These patients are sometimes difficult to recruit and retain, often easily exhausted and agitated, limiting the sample size, the assessment window and the data quality. The development of a research environment adapted to the scientific investigation of these patients is time consuming and requests important clinical and scientific expertise. Coordinating multidisciplinary resources and knowledge (particularly between clinicians and neuroscientists) is therefore more than ever needed. Such collaboration will certainly help to overcome those complications and will lead, on the long term, to significant improvements in the care of patients with severe brain injury. References

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Author Bio Since the beginning of her career, Dr. Caroline Schnakers focused her research on severely brain-injured patients recovering from coma and, more particularly, on the detection of conscious cognitive activity using behavioral and electrophysiological techniques. She has shown the difficulty to detect signs of consciousness (40% of error rate) and the difference of sensitivity between existing coma scales to detect these signs. In parallel, she has developed electrophysiological paradigms for detecting conscious cognitive activity without the intervention of motor and verbal functions (using mental tasks) in severely brain-injured patients who are unable to actively interact with their surroundings. Finally, she has created and validated the first scale allowing pain assessment in patients with disorders of consciousness. In 2010, she received the Young Investigator Award from the International Brain Injury Association in recognition of her work. Dr. Schnakers has published more than 70 articles (H-index: 38), and she is the editor of Coma and Disorders of Consciousness (Springer-Verlag, Paris, 2011; Springer-Verlag, London, 2012).

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53. 54.

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Magee WL, O'Kelly J. Music therapy with disorders of consciousness: current evidence and emergent Conclusion evidence-based practice. Ann N Y Acad Sci. 2015; 1337:256-62. Concussion management an ever-evolving ofI. Katz, treatment Giacino, J. T., J. Whyte, E. Bagiella, K. Kalmar,is N. Childs, A. Khademi, B. Eifert, D.area Long, D. S. Cho, S. A. Yablon, M. Luther, F. M. Hammond, A. Nordenbo, P. Novak, W. Mercer, P. Maurer-Karattup designed to better protecttrialathletes from suffering theinjury." lingering and M. Sherer (2012). "Placebo-controlled of amantadine for severe traumatic brain N Engl J Med 366(9): 819-826. and potentially permanent effects and symptoms of a Horiguchi, J., Y. Inami and T. Shoda (1990). "Effects of long-term amantadine treatment on clinical symptoms and EEGand of a patient in a vegetativereturn state." Clin to Neuropharmacol 13(1): 84-88. concussion premature play. Remember, treating Estraneo, A., A. Pascarella, P. Moretta, V. Loreto and L. Trojano (2015). "Clinical and concussions, particularly those that do not resolve quickly, electroencephalographic on-off effect of amantadine in chronic non-traumatic minimally conscious J Neurol 262(6): 1584-1586. isstate." a complex and dynamic process. It is important to stay Schnakers, C., R. Hustinx, G.the Vandewalle, S. Majerus, consensus G. Moonen, M. Boly, A. Vanhaudenhuyseupdated and S. up to date on literature, statements, Laureys (2008). "Measuring the effect of amantadine in chronic anoxic minimally conscious state." J Neurol Neurosurg Psychiatry 79(2): 225-227. organizational/institutional protocols and requirements, and Schiff, N.laws. (2010). "Recovery of consciousness after brain injury: a mesocircuit hypothesis." state Maintain adequate and complete records.Trends Educate Neurosci. 33(1): 1-9. the athlete, the parents, if applicable, coaches, etc. to ensure Whyte, J., R. Rajan, A. Rosenbaum, D. Katz, K. Kalmar, R. Seel, B. Greenwald, R. Zafonte, D. Demarest, R. Brunner and D. Kaelin (2014). "Zolpidem and restoration of consciousness." Am J Phys Med everyone is doing their role to protect the athlete, is aware of Rehabil 93(2): 101-113. the risks dangers, and canA. Vanhaudenhuyse, assist in providing the best care Thonnard, M., and O. Gosseries, A. Demertzi, Z. Lugo, M. Bruno, C. Chatelle, T. Thibaut, V. Charland-Verville, D. Habbal, C. Schnakers and S. Laureys (2013). "Effect of zolpidem in for the safeofreturn to aplay of the concussed chronic disorders consciousness: prospective open label study." Funct athlete. Neurol. 28(4):259-64.

Neuro-Recovery

Specializing solely in post-acute neuro rehab since 1982

GALVESTON LUBBOCK

Du, B., A. Shan, Y. Zhang, X. Zhong, D. Chen and K. Cai (2014). "Zolpidem Arouses Patients in Vegetative State After Brain Injury: Quantitative Evaluation and Indications." Am J Med Sci. 347(3):178-82.

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Keren, L. Sazbon and Groswasser (2004). "Differential time 2012. and related Conference on Concussion inZ.Sport held in Zurich, November Br J Sports Med appearance of signs, indicating improvement in the state of consciousness in vegetative state 2013;47:250-258. traumatic brain injury (VS-TBI) patients after initiation of dopamine treatment." Brain Inj. 18(11): 4.1099-1105. McCrory P, Meeuwisse WH, Aubry M, et al. Consensus statement on concussion in theR.4thO.International Conference Concussion in Sport held invegetative Zurich, November Ugoya,sport: S. O. and Akinyemi (2010). "The place on of L-dopa/carbidopa in persistent Br J Sports Med 2013;47:250-258.\ state."2012. Clin Neuropharmacol 33(6): 279-284. 5.Millan,Guskiewicz, K,D.Bruce, al., National Athletic Trainers’ Association Position M., L. Maiofiss, Cussac,S,V.Cantu, Audinot,R,J. et Boutin and A. Newman-Tancredi (2002). "Differential actionsStatement: of antiparkinson agents at multiple classes of monoaminergic receptor. I. A multivariate Management of Sport-Related Concussion. Journal of Athletic Training analysis of the binding profiles of 14 drugs at 21 native and cloned human receptor subtypes." The 2004;39(3)280-297. Journal of Pharmacology and Experimental Therapeutics 303(2): 791-804. 6. Broglio, S, Cantu, R, Gioia, G et al., National Athletic Trainers’ Association Fridman, E., J. Calvar, M. Bonetto, E. Gamzu, B. Krimchansky, F. Meli, R. Leiguarda and R. Zafonte ( Statement: Management ofstate Sport Athletic Training 2009).Position "Fast awakening from minimally conscious withConcussion. apomorphine."Journal Brain Inj.of23(2): 172-177. 2014:49(2):000-000. Fridman, E., B. Krimchansky, M. Bonetto, T. Galperin, E. Gamzu, R. Leiguarda and R. Zafonte (2010). 7."Continuous Giza, subcutaneous C, Kutcher, apomorphine J, Ashwal, for S, severe et al. disorders Summary of evidence-based guideline of consciousness after traumatic brainupdate: injury."Evaluation Brain Inj 24(4): and636-641. management of concussion in sports, American Academy of Neurology. A. T., G. Wicky, D. Nicolo and P. Vuadens (2015). "Influence of intrathecal baclofen on 8.Al-Khodairy, http://www.ncaa.org/sport-science-institute/concussion-diagnosis-and-managementthe level of consciousness and mental functions after extremely severe traumatic brain injury: brief best-practices report." Brain Inj 29(4): 527-532. 9. http://www.ncaa.org/sport-science-institute/concussion-diagnosis-and-managementMargetis, K., S. I. Korfias, S. Gatzonis, N. Boutos, G. Stranjalis, E. Boviatsis and D. E. Sakas (2014). best-practices "Intrathecal baclofen associated with improvement of consciousness disorders in spasticity patients." Neuromodulation 699-704.WH, Aubry M, et al. Consensus statement on concussion in sport: 10. McCrory P,17(7): Meeuwisse theX.,4th International Conference on "Comparison Concussionofinlong-term Sport held in Zurich, November Hoarau, E. Richer, P. Dehail and E. Cuny (2012). outcomes of patients with severe or hypoxic brain injuries treated with intrathecal baclofen therapy for 2012.traumatic Br J Sports Med 2013;47:250-258. dysautonomia." Brain Inj 26(12): 1451-1463. 11. McCrory P, Meeuwisse WH, Aubry M, et al. Consensus statement on concussion in sport: Schiff ND, JT, Kalmar K, Victor JD, Bakeron K, Gerber M, et al.inBehavioural improvements the Giacino 4th International Conference Concussion Sport held in Zurich,with November thalamic stimulation after severe traumatic brain injury. Nature 2007; 448(7153):600-603. 2012. Br J Sports Med 2013;47:250-258 Olanow CW, Brin Obeso JA TheS, roleetofal. deep brain stimulation as a surgical treatment 12. Giza, C, MF, Kutcher, J, (2000) Ashwal, Summary of evidence-based guidelineforupdate: Parkinson’s disease. Neurology 55:S60–6. Evaluation and management of concussion in sports, American Academy of Neurology. Piccione F, Cavinato M, Manganotti P, Formaggio E, Storti SF, Battistin L, et al. Behavioral and 13. Giza, C, Kutcher, Ashwal,transcranial S, et al. magnetic Summary of evidence-based guideline update: neurophysiological effects of J,repetitive stimulation on the minimally conscious management concussion in sports, state: aEvaluation case study. and Neurorehabil Neuralof Repair 2011;25(1): 98-102. American Academy of Neurology. 14. McCrory Meeuwisse Aubry M, et S.al.tDCS Consensus statement on concussion in sport: Thibaut A, Bruno P, MA, Ledoux D, WH, Demertzi A, Laureys in patients with disorders of consciousness: randomized double-blind study. Neurology the 4th Sham-controlled International Conference on Concussion in Sport 2014; held 82(13):1112-1118. in Zurich, November Br J Sports Med 2013;47:250-258 at Tableparameters 1. Nitsche2012. MA, Seeber A, Frommann K, et al. (2005) Modulating of excitability during and after transcranial direct current stimulation of the motor cortex. J Physiol 568:291–303. doi:in sport: 15. McCrory P, Meeuwisse WH, Aubry M,human et al. Consensus statement on concussion 10.1113/jphysiol.2005.092429 the 4th International Conference on Concussion in Sport held in Zurich, November Liebetanz D, Nitsche MA, Tergau F, Paulus W (2002) Pharmacological approach to the mechanisms 2012. Br J Sports Med 2013;47:250-258 at Table 1; Giza, C, Kutcher, J, Ashwal, S, et al. of transcranial DC-stimulation-induced after-effects of human motor cortex Brainof concussion Summary of evidence-based guideline update: Evaluation andexcitability. management 125:2238–2247. in sports, American Academy of Neurology.

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Thibaut A, Wannez S, Donneau AF, Chatelle C, Gosseries O, Bruno MA, Laureys S. Controlled clinical trial of repeated prefrontal tDCS in patients with chronic minimally conscious state. Brain Inj. 2017;31(4):466-474. Thibaut A, Di Perri C, Chatelle C, Bruno MA, Bahri MA, Wannez S, Piarulli A, Bernard C, Martial C,

Heine L, Hustinx R, Laureys S. Clinical Response to tDCS Depends on Residual Brain Metabolism and ABOUT THE AUTHOR Grey Matter Integrity in Patients With Minimally Conscious State. Brain Stimul. 2015; 8(6):1116-23.

83.

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Amanda R. Pfeil, Esq. is an associate attorney at Shapiro Winthers & Monti MM, Schnakers C, Korb AS, et al. Non-invasive ultrasonic thalamic stimulation in disorders of McGraw, Denver, SheBrain hasStimul been practicing law consciousnessP.C.in after severe brain injury:Colorado. a first-inman report. 2016; 9:940–941. First case-since report documenting the use awarded of LIFU as a neurostimulatory approach in a TBIStar patientfor suffering 2009 and has been Super Lawyers Rising the from lastanthree acute disorder of consciousness. years in a row. Amanda focuses her practice on representing individuals Bystritsky A, Korb AS. A review of low-intensity transcranial focused ultrasoundforclinicalapplications. nationally who have sustained life-altering injuries as the result of CurrBehavNeurosciReports2015;2:60–66. negligence of others. A large majority of her practice has dealt with Baek H, Pahk KJ, Kim H. A review of low-intensity focused ultrasound for neuromodulation. Biomed Eng Lett 2017; 7:135–142. assisting injured individuals who have sustained traumatic brain injuries and spinal Yoo S-S, Kim H,damage. Min B-K, Eric Franck SP. Transcranial focused ultrasound to the thalamus alters

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NORTH AMERICAN BRAIN INJURY SOCIETY PRESENTS THE

15 T H A N N U A L CONFERENCE ON BRAIN INJURY BEST PRACTICES IN BRAIN INJURY MEDICINE AND N E U R O R E H A B I L I TAT I O N : IMPROVING OUTCOMES THROUGH INTERDISCIPLINARY C O L L A B O R AT I O N

February 27-29, 2020 The Roosevelt Hotel

New Orleans Louisiana CONFERENCE CHAIR Alan H. Weintraub, MD

PLANNING COMMITTEE David Arcinegas MD Ramon Arista-Diaz MD Lisa Brenner PhD Kim Frey PhD Joe Giacino PhD Flora Hammond MD Douglas Katz MD Michael Kirkwood PhD Anthony Kline PhD Jonathan Lifshitz PhD Michael Makley MD Debra McMorrow PhD Risa Nakase-Richardson PhD Dawn Newman PhD Ronald Savage, EdD Heidi Schneider BSN, CRRN Jon Silver MD Eric Spier MD Candy Terfitiller DPT Ross Zafonte DO Nathan Zasler MD Mariuszprofessional Ziejewski PhD 18 BRAIN INJURY

TOPICS TO BE COVERED INCLUDE TBI Neurocritical Care Basic translation neuroscience of TBI Cellular and Imaging Biomarkers Pathobiology, plasticity and opportunistic therapeutics’ Mild TBI in civilians ,military and sports Severe TBI and management guidelines for Disorders of Consciousness Pediatric Acquired Brain Injury Systems of Care for both Adult and Pediatric Brain Injury Across the Lifespan Neurorehabilitation Current Best Practices of Cognitive, Visual, Vestibular, Motor-Sensory Impairments Aging Issues and TBI as a Chronic Disease Neuromodulation and applied functional technology Neuroethical issues faced in clinical practice Complimentary and Integrative Best Practice’s Community Integration and Resource Facilitation

Abstract submission opens summer 2019!

www.abi2020.org Planning assistance from:


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Concussive Brain Injury: A Brief Primer for Healthcare Professionals Nathan D. Zasler, MD, FAAPM&R, FACRM, BIM-C

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Introduction Concussive brain injury (CBI), also known as mild traumatic brain injury (MTBI), although quite prevalent, is still poorly understood by many healthcare professionals. CBI incidence, which is likely underestimated, accounts for about 80 - 85 percent of all traumatic brain injuries that occur each year in the United States (many of which never receive hospital-based care). Falls are the most frequent cause of CBI, followed by blunt trauma (as in sports injuries), vehicular accidents and assaults, in that order. The typical person sustaining such an injury is a young male. Post-concussional sequelae may impede cognitive, behavioral, physical, emotional, and social function and thereby create relational, vocational and avocational challenges. Awareness of community resources is a prerequisite to providing neuromedical, as well as, non-medical services to this special patient population. The term concussion has its origins in the Latin word “concussus” which means “to shake violently”. Interestingly, there is no internationally agreed upon definition of concussion making both research and clinical care more challenging. Traditionally, CBI is defined by the initial, post-resuscitation Glasgow Coma Scale (GCS) score of 13 to 15 without subsequent decline below 13.

CBI has been defined as a traumatically induced physiological disruption of cerebral function, as manifested by at least one of the following: 1. loss of consciousness of no longer than 30 minutes; 2. any loss of memory, either retrograde or anterograde (with post-traumatic amnesia being no longer than 24 hours); 3. any alteration in mental status at the time of the accident, even in the absence of loss of consciousness or amnesia; 4. physical symptoms which are potentially brain related (e.g. nausea, headache, dizziness, tinnitus, visual aberrations, olfactory deficits, or extended periods of fatigue); 5. development of post-traumatic cognitive deficits which cannot be completely accounted for by emotional factors.

Notably, individuals with intracranial lesions and those with lower GCS scores (e.g. 13) generally have poorer cognitive and neurobehavioral outcomes and some have advocated that such injuries actually be labeled as moderate traumatic brain injuries and not CBIs. All clinicians should be aware that loss of consciousness is not a prerequisite for making a diagnosis of CBI. CBI is common in everyday life and is encountered by clinicians in sports medicine, pediatrics, neurosurgery, neurology, physiatry, and primary care. Outcomes are optimized when patients are seen earlier rather than later and when they are supported throughout their recovery. It is of paramount importance to identify symptom generators given that these patients often have different etiologies for their complaints that may evolve over time. Of equal importance is avoiding use of inappropriate terminology and jargon in documenting post-CBI symptoms and signs.

In this context, we discourage the use of the term post-concussion syndrome (PCS) given the following facts: •

A syndrome is a consistent set of findings associated with a condition with symptom linkage and coupling of symptom resolution.

There is no consistency to the signs or symptoms of concussion.

There is no symptom or set of symptoms that are a priori diagnostic of CBI.

Presentation and Prognosis Symptoms following CBI typically start at the time of injury or soon thereafter. There is no true “syndrome” associated with this neurological injury and symptoms may be cognitive, behavioral and/or physical with type and number varying greatly across patients. Symptoms are typically short term and usually resolve spontaneously. Common physical symptoms following these types of injuries can include headaches, dizziness, tinnitus, visual alterations including blurry and double vision, as well as, photosensitivity, among others. Concussive convulsions, although rare, can be a scary phenomenon but the good news is that they are not associated with long term risk of epilepsy. Cognitive-behavioral symptoms will vary based on time post-injury with early potential symptoms including amnesia, confusion, dazing and disorientation. Cognitive-behavioral symptoms that can occur later may include problems with attention, short term memory, and executive skills such as multitasking, organization, prioritization and judgment. Psychobehavioral changes that may be seen following concussion include dysomnias, emotional lability, depression and a spectrum of anxiety related disorders (including PTSD) which may or may not be directly related to the CBI itself. Interestingly, the more amnestic a patient is for the events at hand the less likely it is that they will develop PTSD. Most patients with CBI, assuming there are no other significant injuries whether physical or psychological, do well within relatively short periods of time if they do not come to the injury with substantive risk factors for protracted recovery or have secondary gain incentives which may promulgate their symptom presentation. Most individuals who are otherwise healthy and without risk factors for protracted recovery, do well within 3 to 6 months following CBI. Very few patients with concussion have neurogenic symptoms due to the concussion beyond one year (probably less than 5%) although this remains debated. In those patients with more persistent symptoms, it is important to keep in mind that undue sensitization to distress from mild, negligible or benign symptoms can lead to a spectrum of abnormal illness behaviors and response bias in patient self-reports. Anxiety can augment symptom perception and health concerns. Sensitization may be especially relevant for post-concussive symptoms that often appear with similar frequency in the general population. Neurobiological theories of persistent symptomatology have been posited but there are likely multiple mechanisms responsible, many of which are probably non-neurogenic. Symptom magnification of post-concussive impairment can reflect multiple factors, including financial reward and psychological needs, garnering attention that would otherwise not be forthcoming; resolving pre-existing life conflicts; retaliating against employer or spouse; finding more socially acceptable attribution for psychological disorders; reducing anxiety and exerting a "plea for help" or soliciting acknowledgment of perceived difficulties. Depression, post-traumatic stress disorder and other anxiety conditions in which there can be sensitization or magnification of symptoms can represent important imitators of bona fide physical and neurologic impairment, as can symptoms generated by cranial/head trauma, as well as cervical acceleration deceleration injury (i.e. whiplash).

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After initial assessment, patients with CBI ideally should be seen every few weeks and as clinically necessary to monitor recovery.10 If they develop persistent symptoms, which some have referred to as Persistent Post-Concussive Symptoms (PPCS), the frequency can be reduced provided symptomology and functional status remain stable or are improving. There is no symptom burden threshold for the diagnostic label of PPCS and careful differential diagnosis is important so as to not label someone with non-cerebral based impairments as concussed if their symptoms have an alternate explanation such as cranial trauma or cervical whiplash. The 5th International Conference on Concussion in Sport, held in Berlin, has defined PPCS as symptoms persisting for more than 2 weeks in adults and for more than 1 month in children and adolescents.2 This timeframe, however, has been defined inconsistently across various studies published on this topic. The following variables have all been found to contribute to poorer outcome and higher levels of functional impairment and disability: a) injury context variables including collateral non-cerebral traumatic injuries, especially cranial and cervical injuries, multiple injuries, greater motor impairment, presence of chronic pain; b) premorbid biologic variables such as previous brain injury and older age; c) preand post-injury psychosocial variables including lower intelligence, history of alcohol or substance abuse, psychiatric history, poor school achievement, lack of social supports; d) personality and coping variables such as perceptions of victimization, over-achievement, dependency, grandiosity and borderline personality traits, along with childhood sexual abuse, post-traumatic stress and post-traumatic depression; e) environmental variables including litigation related financial incentives and/or stressors.

Assessment The clinician should include a thorough medical history (including mental health), results of clinical evaluations, assessment of current clinical status, plans for future treatment, including rehabilitation and re-evaluation, diagnosis and clinical impressions, and an estimate of time for full or partial recovery as well as return to activities (i.e. school, sports, work, recreation). Any restrictions or accommodations should be stipulated. A thorough exam of a patient with CBI should include an elemental neurological exam including chemosensory assessment, a relevant musculoskeletal exam typically focused on the head, neck and upper shoulder girdle, and appropriate cognitive behavioral assessments as clinically indicated. There are now a number of on field, as well as officebased assessments that can be used for cognitive screening and they can be done serially to monitor recovery. Importantly, the diagnosis of CBI should be based on: patient and chart history, temporal relationship of symptoms to injury in question, nature of post-concussive complaints and "fit" with expected symptomatology, corroboration by others including "noninvested" individuals, and degree to which symptom progression fits with the expected natural history of neurologic recovery. Adequate consideration must be given to alternative explanations for each impairment. Clinicians need to remember that symptoms associated with concussion can be seen in other conditions including affective disorders, chronic pain and insomnia and are not, in and of themselves, indicative of concussion. Additionally, clinicians should realize that there is a relatively significant percentage of the nonconcussed patients who will report post-concussive symptomatology. Assessments should ideally also include testing of effort and response bias as well as symptom and performance validity. Symptom descriptors used as "diagnoses" such as "post-traumatic headache" and "post-traumatic dizziness", are not only incomplete

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but provide no pathoetiologic information which can translate to appropriate diagnostic and treatment strategies. Each condition/ impairment should be listed with a presumptive pathoetiology, such that "post-traumatic headache" might be "post-traumatic headache secondary to right greater occipital neuralgia, right-sided referred cervical myofascial pain and migraine without aura". Objectification of symptoms should be sought when feasible and when doing so may alter clinical management. Neuropsychological assessment is a much more sensitive measure than bedside examination and currently is considered an important tool in providing objective assessment of cognitive function, although it has its limitations. There is no consensus on when to send someone for this type of testing nor is there any agreed upon battery of tests for assessing CBI related impairments. Generally, if patients remain symptomatic at 2 months it is probably advisable to consider having such an evaluation performed with a predominant focus on return to normal activities whether work, school or sports. Due to the nature of assessing cognitive functions in analogue situations, it too often falls short of predicting real world performance. Because assessments include interviews about self-reported symptoms and rely heavily on measures of performance on standardized tests, valid results require patient veracity, cooperation and motivation; however, patients seen for presumptive brain injury related impairments often over-report pre-injury functional status in regard to post-concussive symptoms that often appear with similar frequency in the general population. Given the frequent highly desirable incentives to distort performance, particularly when there are secondary gain incentives, examinee motivation to provide truthful report and full effort is an extremely important prerequisite to valid assessment. Valid assessment is required for provision of: a) accurate diagnosis; b) appropriate and timely treatment to promote optimal recovery; c) prevention of iatrogenic impairment and disability reinforcement, and promulgation of unnecessary health care costs; and d) appropriate legal compensation decisions based on causality and level of damages suffered. Certain populations such as athletes, as well as police, fire and military personnel, will often tend to minimize rather than magnify symptom complaints to enable them to continue to “serve�. This type of response bias must also be assessed for and recognized when present. The role of diagnostic testing remains controversial. In the acute setting, cerebral CT is indicated when there is a loss of consciousness, focal neurological deficit, abnormal GCS score, persistent altered mental status, suspected skull fracture or dural penetration, and/or clinical evidence of neurological deterioration. MRI may be useful when the exam remains abnormal and the CT is unrevealing. In the post-acute setting, imaging generally does not change clinical management but may be relevant in clinicolegal contexts as well as prognostication. There is currently insufficient evidence-based medicine to recommend functional imaging studies or volumetric brain imaging (singly or serially), as these tests cannot date injuries nor are abnormalities seen on them necessarily pathognomonic of CBI as other conditions can present with similar findings. The role of serial, functional or volumetric brain imaging studies has yet to be determined. Such evaluations assume a dichotomous scenario where someone either did or did not have a brain injury. It is often more complex than that as there may be multiple comorbid conditions present that can cause abnormal neuroimaging results on these types of tests. Most importantly, there is insufficient data showing a correlation to clinical symptoms and/or prognosis, never mind an absence of evidence indicating that such abnormalities drive treatment decisions in any way whatsoever.


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Treatment

Return to Sports

There are no agreed upon treatment protocols for post-concussion symptomatology. Clinical practice guidelines have been proposed based on relatively scant evidence-based literature, most of which is not of a prospective, controlled and blinded nature with large sample sizes.

Based on current evidence-based guidelines, athletes should not return to play until their symptoms have abated, their neurological exam “normalized” including neurocognitive testing, and they are off medications.

Appropriate and timely referral to other specialists including psychologists, neuropsychologists, physical and occupational therapists, speech language pathologists, and vocational rehabilitation specialists may all be relevant in the context of addressing impairment and disability in those with more persistent problems. That being said, there are general principles that are seemingly agreed to by those who treat this patient population including: •

Modulating pain as early as possible including pain symptom generators in the head/scalp and neck, the latter which can refer into the head and cause headaches

Facilitating restorative sleep as expediently as possible

• •

Treating associated affective disorders and/or instability Limited down time with early progressive aerobic exercise program

Providing cognitive compensatory techniques

Early provision of focused education on concussion and prognosis for both patient and patient’s family

Cognitive behavioral therapy as relevant to facilitate adjustment and minimize secondary psychoemotional impairments

Chronic Traumatic Encephalopathy

Return to play should be graded with ongoing monitoring and if post-concussive symptoms recur, then progression should cease. There has been a burgeoning of work looking at the role of subsymptom exacerbation aerobic training to facilitate recovery following concussion. Formal neuropsychological testing would be indicated in players with histories of multiple concussions and along with a focused neurological exam, may be used to make decisions about retirement from contact sports.

Conclusions The majority of individuals who sustain single concussive brain injuries do well, particularly if their injuries are not complicated by secondary issues such as PTSD, depression, anxiety, chronic sensory disorders such as vestibulopathy, chronic pain, and/or other issues. Early education, appropriate rest with graduated return to aerobic exercise, referral to community resources and expedient modulation of early symptoms facilitates earlier recovery and minimizes risks for symptom persistence. Recommended Readings American Academy of Neurology. Update: Evaluation and management of concussion in sports. Minneapolis, MN. 2013. Arcineigas D, Zasler ND, Vanderploeg R, Jaffee MS: Clinical Manual for the Management of Adults with Traumatic Brain Injury. American Psychiatric Publishing, Inc. Washington, DC. 2013. Babcock, L, Kurowski, B.G. Identifying children and adolescents at risk for persistent post-concussion symptoms. JAMA. 315(10): 987-988, 2016.

Chronic Traumatic Encephalopathy (CTE) is a progressive degenerative disease of the brain associated with repetitive brain trauma, including symptomatic concussions as well as asymptomatic sub-concussive injuries. Trauma triggers progressive degeneration of the brain tissue, including the build-up of an abnormal protein called tau. These changes in the brain can begin months, years, or even decades after the last brain trauma. The brain degeneration is associated with memory loss, confusion, headache, impaired judgment, impulse control problems, aggression, depression, and eventually, progressive dementia. The issue of CTE and its causal relationship to recurrent concussion remains a hot topic of debate on several levels.

Brown A, Yeates KO, Sarmiento K, et al. Centers for Disease Control. Prevention guideline on the diagnosis and management of mild traumatic brain injury among children. JAMA Pediatrics. 172 (11), 2018.

Return to Work

Fehr SD, Nelson LD, Scharer KR, et al. Risk factors for prolonged symptoms of mild traumatic brain injury: a pediatric sports concussion clinic cohort. Clinical Journal of Sport Medicine. 29(1):11-17, 2019.

Employment determinations should be made based on the ability of the injured person to work, with or without accommodation, potentially with persistent objectively defined impairment(s) and meet job demands and other conditions of employment, including travel to and from work. Risks and restrictions need to be specifically defined for all involved parties. Getting people back to work at least on a part time, decreased work capacity basis facilitates earlier work reentry and minimizes risks of longerterm absenteeism as well as increases potential for earlier return to full work duty. Many employers, however, take the position that the injured worker can only return to their prior position at normal hours and normal work duty assignment. This approach is shortsighted to say the least and results in less likelihood of earlier return to work or return to work at all.

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Carney N, Ghajar J, Jagoda A, et al. Concussion guidelines step 1: systematic review of prevalent indicators. Neurosurgery. 75(suppl 1):S3-S15, 2014. Cnossen MC, van der Naalt J, Spikman JM, et al. Prediction of Persistent Post-Concussion Symptoms after Mild Traumatic Brain Injury. J Neurotrauma. 35(22):2691-2698, 2018. Connery AK, Peterson RL, Baker DA, Randolph C, Kirkwood MW. The Role of Neuropsychological Evaluation in the Clinical Management of Concussion. Physical medicine and rehabilitation clinics of North America. 27(2):475-486, 2016. Culotta VP., Sementilli ME., Gerold K., Watts CC. Clinicopathological heterogeneity in the classification of mild head injury. Neurosurgery, 38, 2, 245-50, 1996. Cummings, J., et al. Report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology: Assessment: Neuropsychological testing of adults. Neurology, 47, 592-599, 1996. Ellis MJ, Leddy JJ, Willer B. Physiological, vestibulo-ocular and cervicogenic post-concussion disorders: an evidence-based classification system with directions for treatment. Brain injury. 29(2):238-248, 2015. Echemendia RJ, Meeuwisse W, McCrory P, et al. The Sport Concussion Assessment Tool 5th Edition (SCAT5). Br J Sports Med. 51(11):848-850, 2017.

Giza CC, Choe MC, Barlow KM. Determining if rest is best after concussion. JAMA Neurol. 75 (4): 399–400, 2018. Goldberg G, Zasler ND, Watanabe T. Management of a Patient With Slow Recovery From a Mild Traumatic Brain Injury. PM&R. 5(10):890-899, 2013. Green, P., Rohling, M.L., Lees-Haley, P.R. and Allen, L.. Effort has a greater effect on test scores than severe brain injury in compensation claimants. Brain Injury, 15, 12, 1045-60, 2001. Haider MN, Leddy JJ, Pavlesen S, et al. A systematic review of criteria used to define recovery from sportrelated concussion in youth athletes. Br J Sports Med. 52(18):1179-1190, 2017. Iverson GL, Lange RT, Gaetz M, Zasler N. Mild Traumatic Brain Injury. In: Brain Injury Medicine. Second edition. N.D. Zasler, D.I. Katz & R. Zafonte (Eds.). Demos, New York. 434-469, 2013. Iverson GL, Gardner AJ, Terry DP, et al. Predictors of clinical recovery from concussion: Systematic review. Br J Sports Med. 51 (12): 941–948, 2017. Iverson Gl, Silverberg N, Lange RT, Zasler ND. Conceptualizing Outcome From Mild Traumatic Brain Injury. In: Brain Injury Medicine. Second edition. N.D. Zasler, D.I. Katz & R. Zafonte (Eds.). Demos, New York. 470-497, 2013. Iverson GL, Gardner AJ, Terry DP, et al. Predictors of clinical recovery from concussion: a systematic review. Br J Sports Med. 51:941-948, 2017. Kamins J, Bigler E, Covassin T, et al. What is the physiological time to recovery after concussion? Systematic Review. Br J Sports Med. 51(12):935-940, 2017.


Kay, T., et al. Definition of mild traumatic brain injury. Traumatic Brain Injury Committee of the Head Injury Interdisciplinary Special Interest Group of the American Congress of Rehabilitation Medicine. Journal of Head Trauma Rehabilitation, 8(3):86-87, 1993. King D, Brughelli M, Hume P, Gissane C. Assessment, Management and Knowledge of Sport-Related Concussion: Systematic Review. Sports Medicine. 44(4):449-471, 2014. Leddy, J.J., Sandhu, H., Sodhi, S., et al. Rehabilitation of concussion and post-concussion syndrome. Sports Health. 4(2);147-154, 2012. Manley G, Gardner AJ, Schneider KJ, et al. a systematic review of potential long-term effects of sport-related concussion. Br J Sports Med. 51 (12): 969–977, 2017. Marshall, S., Bayley, M., McCullagh, S., et al. Updated clinical practice guidelines for concussion/mild traumatic brain injury and persistent symptoms. Brain Injury. 29(6):688-700, 2015. Matuszak JM, McVige J, McPherson J, Willer B, Leddy J. A Practical Concussion Physical Examination Toolbox Evidence-Based Physical Examination for Concussion. Sports Health: A Multidisciplinary Approach. 8(3):260-269, 2016. McCrory P, Meeuwisse W, Dvorak J, et al. Consensus statement on concussion in sport-the fifth international conference on concussion in sport held in Berlin, October 2016. Br J Sports Med. 51:838–847, 2017. Oldenburg, C., Lundin, A., Edman, G., et al. Cognitive reserve and persistent post-concussion symptoms – a prospective mild traumatic brain injury (mTBI) cohort study. 30(2):146-55, 2016. Ontario Neurotrauma Foundation. Guidelines for concussion/mild traumatic brain injury and persistent symptoms. Available from: H TTP S://Brain injury guidelines.org/concussion/. Accessed 2/18/19. Ponsford J, Nguyen S, Downing M, et al. Factors associated with persistent post-Concussion symptoms following mild traumatic brain injury in adults. J Rehabil Med. 51(1):32-39, 2018. Zasler ND. Post-traumatic Sensory Disorders in TBI. In: Arcineigas D, Vanderploeg R, Zasler ND, Jaffee MS, eds. Management of adults with traumatic brain injury. American Psychiatric Publishing, Inc.; 2013. Zasler ND: Sports concussion headache: A Review. Brain Injury. 29(2):207-220, 2015 Zasler, N.D., Confounding Factors in PCD. In: F. Zollman (2nd Ed.). Management of Traumatic Brain Injury. Demos Medical. New York. 130-138, 2016.

Author Bio Nathan Zasler, MD, is Founder, CMO and CEO of Concussion Care Centre of Virginia, Ltd., as well as Tree of Life Services, Inc. and Vice-Chairperson of the International Brain Injury Association (IBIA). Dr. Zasler is board certified in PM&R, fellowship trained in brain injury and subspecialty certified in Brain Injury Medicine. He is an affiliate professor in the VCU Department of Physical Medicine and Rehabilitation, Richmond, VA, and an adjunct associate professor in the Department of Physical Medicine and Rehabilitation at the University of Virginia, Charlottesville. He can be reached at 804-270-5484 or by e-mail at nzasler@cccv-ltd.com. 4.875 x 4.875.qxp_front 11/1/17 12:02 Page 1

We Put You First ...By improving the lives of individuals with a traumatic brain injury or other neurological impairment through residential and/or outpatient therapies. 5666 Clymer Road • Quakertown PA 18951 215-538-3488 • SuccessRehab.com BRAIN INJURY professional 25


Expanding Our Continuum of Care For more than 35 years, you’ve come to know Baylor Scott & White Institute for Rehabilitation as the first choice for traumatic brain injury, spinal cord injury, stroke, orthopedic and neuro rehabilitation. Now we’re adding a new service to our continuum of care: Neuro Transitional Rehabilitation. This new service is designed to help patients who are unable to return home due to physical, behavioral and cognitive impairments, restore their independent living skills, with the goal of safely functioning in their home and community.

For mor information visit BSWRehab.com/NeuroTransitional or call 469.862.8301 3601 Swiss Avenue | Dallas, TX 75204

Acute Care Therapy | Inpatient Rehabilitation | Neuro Transitional | Outpatient Therapy | Home Health Physicians provide clinical services as members of the medical staff at Baylor Scott & White Institute for Rehabilitation and are neither employees nor agents of Baylor Scott & White Institute for Rehabilitation, Baylor Health Care System, Scott & White Healthcare, Baylor Scott & White Health, Select Medical Corporation or any of their subsidiaries or affiliates. Baylor Scott & White Institute for Rehabilitation is part of a comprehensive inpatient and outpatient rehabilitation network formed through a joint venture between Baylor Institute for Rehabilitation at Gaston Episcopal Hospital and Select Physical Therapy Texas Limited Partnership BIR JV, LLP, ©2019 Baylor Scott & White Health.


Integrating Resilience-Building into the Neurorehabilitation Process Brigid Waldron-Perrine, PhD • Jean Neils-Strunjas, PhD • Diane Paul, PhD • Allison Clark, PhD • Raksha Mudar, PhD Kacey Maestas, PhD • Melissa Duff, PhD • Kathleen T. Bechtold, PhD Joint Committee on Interprofessional Relations: American Speech-Language-Hearing Association and the Society for Clinical Neuropsychology of the American Psychological Association The long-term physical, cognitive, emotional, and behavioral impairments associated with acquired brain injury (ABI) in adults are well known. Despite having residual impairments, however, persons with ABI can lead productive, meaningful, engaged lives. Researchers across populations have suggested that a construct called resilience is “protective” against negative outcome and could even facilitate adaptation and adjustment for individuals faced with serious injury or adversity (Masten & Obradovic, 2006). Resilience has been found to be associated with lower distress and better quality of life when individuals are faced with acquired neurological injuries (Bonanno, Kennedy, Galatzer-Levy, Lude, & Elfstrom, 2012; Shin et al, 2012). Research on the role of resilience in the adaptation to ABI has only just begun. Already there is mounting evidence, however, that resilience is one of the main trajectories of psychological adjustment following ABI (Sigurdardottir, Andelic, Roe, & Schanke, 2014; White et al, 2012). When individuals have higher resilience during recovery from brain injury, they report significantly fewer symptoms, better quality of life, and better functional outcomes (Bertisch et al., 2014).

What is Resilience? Resilience is commonly described as personal qualities and skills that enable a person to adapt well in the face of adversity or trauma.

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Research on resilience has focused on describing resilient qualities that help people cope well with or “bounce back” from adversity, such as self-esteem, self-efficacy, subjective well-being, optimism, faith, self-determination, ability to adapt, and goal orientation; and their relationship with outcomes. The most commonly used instrument of resilience, Connor-Davidson Resilience Scale (CD-RISC; Connor & Davidson, 2003) was developed based on the foundational early work on resilience and has been found to capture five factors: 1. personal strengths (e.g., notions of tenacity, high standards, and personal competence); 2. strengthening effects of stress and adversity (e.g., tolerance of negative emotion, trust in one’s instincts); 3. secure relationships and positive acceptance of change; 4. sense of personal control; and 5. spiritual influences that provide life meaning. Consideration of these identified factors can assist us in identifying pathways for integrating resilience-building into our clinical approaches within the neurorehabilitation setting.

Promotion of Resilience in the Brain Injury Rehabilitation Process: A Shift in Thinking Traditionally, the rehabilitation process is aimed at promoting the recovery and adaptation of the individual to the highest level of functioning through provision of education, training, and skill development. While rehabilitation typically focuses on the identification and reduction of impairments for improving


functioning, a focus on resilience and re-engagement of patients in personally meaningful and valued activities may provide clinicians another avenue for facilitating functional recovery in the rehabilitation process. Although psychologists and other mental health providers on the rehabilitation team may play a primary role in helping persons with TBI to maximize resiliency, all rehabilitation professionals have the opportunity to support resiliency by assisting their patients in refocusing on strengths and personal achievements. Godwin and Kreutzer (2013) discuss how the adaptation of resilience theory to persons with TBI will reflect a shift in thinking away from the “problem-saturated narratives” that are frequently encountered in rehabilitation settings towards identification of strengths and achievements. They highlight several factors that may be important for this shift, including 1. addressing resilience at both the individual and family level, 2. normalizing emotional responses and maximizing emotional communication to facilitate families working together, 3. helping the individual and family maintain focus on post-injury gains rather than comparing current to pre-injury functioning, and 4. developing new methods for defining and achieving goal successes. A resilience-promoting rehabilitation milieu can be created by integrating specific approaches/questions, information, and guidance in the rehabilitation process. Such an approach may assist individuals with ABI and their families in maximizing adaptation and adjustment. Assessment

rehabilitation professionals can also highlight personal strengths, abilities, and assets (e.g., do individuals see themselves as hopeful, optimistic, hard worker; good sense of humor; persistent; etc.). Patients can be guided to identify skills, beliefs, and values that they have relied upon successfully in the past to adapt and adjust to challenging life situations, and to apply those skills to their present circumstance. Personal strengths Facilitation or maintenance of hope and an emphasis on abilities and strengths versus disabilities and limitations (although these must be acknowledged) is an opportunity available to all rehabilitation professionals. Identifying what skills, coping strategies, and abilities can still be relied upon will provide pathways for adaptation. Hopefulness has been found to be related to many positive outcomes and inversely related to negative emotion in a variety of rehabilitation populations (Collins & Kuehn, 2004). Recent research findings support that greater hopefulness during the rehabilitation process in a variety of rehabilitation populations is related to positive psychological adjustment (Kortte, et al., 2010) and higher physical functioning post discharge (Kortte, et al., 2012). Rehabilitation professionals are often tasked with the challenging but important job of guiding goal-setting and expectations for rehabilitation. Given the very heterogeneous outcomes in ABI, it can be a challenge to find the right balance of hope and realistic expectation, as surely most professionals have seen examples of individuals exceeding rehabilitation expectations and some falling short. An emphasis on maintaining hope in the context of preparing individuals and families for acceptance of some significant life and functional changes is likely to be most adaptive.

Within the clinical assessment process, rehabilitation clinicians are well placed to get a sense of a patient’s level of resilience and potential ways of facilitating resilience. Open-ended questions that focus on both personal factors (e.g., tolerance of change, Table1.1.Interview InterviewQuestions Questions to to Tap Tap Into into Resiliency Resiliency TABLE negative emotion and lack of control, self-efficacy and tenacity, Factor 1: Tell me about a time that you were successful. What personal qualities sense of meaning and purpose in Personal strengths helped you to succeed? life, use of religion and spirituality What are some of the goals you have for yourself in life? in coping) and environmental What is one strength you have and how have you used it in your life? factors (e.g., available social support and other practical Factor 2: Do you believe that stress can at times have a strengthening effect? If so, resources, influence of the provide some examples. Strengthening perspectives of others, previous experiences Do you know of a personal experience where someone overcame an life experiences that may impact obstacle? resilience via learned ingenuity What are some ways you have overcome obstacles or problems in the past? or learned helplessness) can be useful. Based on the elements that have been identified in the Factor 3: How do you handle change? literature that contribute to Supportive Which relationships provide you with support? resilience (Connors & Davidson, relationships and What makes you feel most supported by others? 2003), a set of example clinical change interview questions is outlined in TABLE 1. Factor 4: How much control do you feel that you have to a make this situation better? Role of the Rehabilitation Professional in Facilitating Resilience Although there is known benefit from assisting patients in understanding their impairments and functional deficits,

Sense of control

In the past, what has made you feel you have more control in a situation? Do you feel that you have limited control in life and that your life is in the hands of “fate”?

Factor 5: Live meaning

What provides you with a sense of meaning and purpose in life? Values? Beliefs? What makes a life experience meaningful for you? How do your spiritual and/or religious beliefs affect your life meaning?

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For any one individual, we cannot reliably predict exactly how functional rehabilitation will progress, and to what extent, but we can facilitate hopefulness for appropriate specific outcomes given real-life prognostic indicators. Although as yet unproven at the individual level, it stands to reason that the individuals who overcome and achieve goals beyond typical recovery expectations may be the individuals with the most resilience, personal drive, and ambition. It may be those personal attributes and strengths that drive the thriving after ABI.

For any one individual, we cannot reliably predict exactly how functional rehabilitation will progress, and to what extent, but we can facilitate hopefulness for appropriate specific outcomes given real-life prognostic indicators.

Adversities as strengthening experiences A great deal of literature across clinical populations discusses the idea of perceiving benefit or growth from traumatic experiences. In this regard, viewing experience of ABI as an opportunity for growth is not just possible, but may be common. For the rehabilitation professional, assisting patients in identifying past life experiences that were stressful and/or traumatic and discussing the lessons learned from those experiences is another means by which we can facilitate resilience. There is evidence to suggest that benefit-finding after trauma assists individuals in adapting and adjusting to difficult experiences. For example, individuals across medical populations who engage in benefitfinding as a coping strategy have been found to have higher levels of life satisfaction, lower levels of disability, and fewer symptoms of distress (Lechner, Carver, Antoni, Weaver, & Phillips, 2006; Pakenham, 2005; Thompson, 1991). There is some evidence to suggest that individuals can be taught how to focus on the benefits of life challenges to bolster their adaptation and adjustment (Emmons & McCullogh, 2003). Rehabilitation therapists, therefore, can discuss the adaptive coping skills patients have developed and the lessons they have learned from their experiences. Via discussion, engagement of these resiliency resources will ultimately help the patients in achieving their goals. Supportive relationships in the face of change Another aspect of resilience that has been consistently identified is presence of a social support system. Level of social support varies considerably across individuals with regard to number of supportive individuals available, types of relationship (e.g., parent, spouse, child, best-friend), the quality and dynamics of the relationship, and the willingness of the support person to engage in emotional and practical support activities. It is well known in the literature that the perception of support is much more influential on the well-being of the patient than provision of instrumental support (Kaplan, 1990). Thus, facilitation of the perception of being supported by family and friends, and the rehabilitation team itself, is key in maximizing this aspect of resilience in persons with ABI. Incorporation of the family or other naturalistic support persons into the rehabilitation process can promote a supportive environment for the patient. Rehabilitation professionals can empower support persons to engage in practical and emotional support roles by providing education and training and facilitating family members’ understanding of how to best support and assist the patient in recovery, adaptation, and self-reliant functioning. Through this process, it is imperative that the caregivers feel supported by the team to serve in these critical roles. Incorporating key support persons in the rehabilitation process promotes optimal facilitation of rehabilitation at both the family system and individual levels.

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Personal sense of control. Another important aspect of resilience in the context of rehabilitation is the perception of control over rehabilitation outcomes, which is strongly related to the patient and family’s understanding of the individual injury characteristics and the rehabilitation process. Inherent in the recovery process is a need for patients to rely heavily on medical and rehabilitative professionals for survival, care, and return to function. After the acute recovery period, the rehabilitation team is uniquely poised to assist the individual in re-developing self-reliance and increased personal control over everyday life tasks and activities. Resilience includes the ability to recognize and overcome challenges, manage one’s injury and health, and find optimal solutions to problems through a positive lifestyle and outlook. Clinical experience suggests that many of the characteristics of resilience require appropriate knowledge about ABI. Thus, education may play a critical role in facilitating a sense of personal control in persons with brain injury and their family members. The patient’s understanding his/her injury and its implications and the ways that rehabilitation interventions will promote restoration of function or adaptation are foundational to engagement of that individual (Lequerica & Kortte, 2010). Families who have information about ABI and available resources may feel more confident and competent in serving as care partners, thus promoting a sense of personal control in care-givers as well. Setting and sharing goals with the patient and family members and talking about ways to help build motivation and resilience are important. Rehabilitation professionals should encourage patients and families to ask questions about the injury and rehabilitation progress and actively participate in the goal-setting process. The rehabilitation team should periodically evaluate whether patients and their families comprehend messages from providers in a way that enables them to participate responsibly in their care. By ensuring good communication, engagement of both the patient and family in rehabilitation will be facilitated, and the patient and family are likely to experience a greater sense of control of their rehabilitation, thereby increasing resilience and maximizing outcomes. Life meaning. The aspects of life that each of us finds meaningful are intertwined with our interests, beliefs, and values. Although an individual’s abilities may be affected by the brain injury, his/her life meaning is likely to remain strongly linked to those life-long interests, beliefs and values.


A personal sense of spirituality, for example, has been found to be related to greater life satisfaction following onset of spinal cord injury (Matheis, Tulsky, & Matheis, 2006), and connectedness to a higher power was found to be predictive of both subjective and objective functional outcomes in a traumatic brain injury sample (Waldron-Perrine et al 2011). Understanding a patient’s belief system and values can assist the rehabilitation clinician in designing meaningful therapy activities and goals. Collaboration on establishing personally meaningful goals will facilitate patient engagement in the process via incorporation of his/ her wants and needs into the rehabilitation plan. Long-term goals that might take months to years to achieve lend themselves well to use of a values-based framework (i.e., how is this goal consistent with the individual’s self-concept and the aspects of life that are important to them). Notably, however, for “big picture” goals, discussion of progressive steps (i.e., more “immediate” goals) in the context of movement towards the overarching goal is essential for rehabilitation engagement. Frequent reminders of the valuebased framework (e.g., why is this goal important to me? how does it fit with what I think matters in life?) will facilitate engagement in current rehabilitation efforts.

Summary One of the overarching goals of clinicians working with persons who have sustained acquired brain injury is to ultimately improve quality of life. One avenue by which this is likely to be achieved is via better understanding of the principles of resilience (i.e., a focus not on symptoms or problems in coping, but on how individuals cope well with their barriers via use of positive personal and environmental attributes that may facilitate rehabilitation) within this unique population. Understanding how resilience may be manifest within an individual or family unit across therapeutic modalities is imperative to facilitation of resilience across disciplines. Patient education provided by clinicians of all types should focus on provision of realistic hope, with an emphasis on self-reliance, in the context of what can be done to aid recovery at the provider, family and individual levels.

By focusing integrative assessment and intervention efforts on facilitation of resilience, we, as a rehabilitation community, will be able to achieve the ultimate goal of establishing innovative integrative rehabilitation programs and standards that facilitate best possible rehabilitation outcomes. References Bertisch, H., Rath, J., Long, C., Ashman, T., & Rashid, T. (2014). Positive psychology in rehabilitation medicine: a brief report. NeuroRehabilitation. 34(3), 573-585. Bonanno, G. A., Kennedy, P., Galatzer-Levy, I. R., Lude, P., & Elfström, M. L. (2012). Trajectories of resilience, depression, and anxiety following spinal cord injury. Rehabilitation Psycholology, 57(3), 236-247. Collins, A. B., & Kuehn, M. D. (2004). The construct of hope in the rehabilitation process. Rehabilitation Education, 18, 175-183 Connor, K. M., & Davidson, J. R (2003). Development of a new resilience scale: The Connor- Davidson Resilience Scale (CD-RISC). Depress Anxiety, 18(2), 76-82. Emmons, R. A., & McCullogh, M. E. (2003). Counting blessings versus burdens: Experimental studies of gratitude and subjective well-being in daily life. Journal of Personality and Social Psychology, 84(2), 377-389. Godwin, E. E., & Kreutzer, J. S. (2013). Embracing a new path to emotional recovery: adopting resilience theory in post-TBI psychotherapy. Brain Injury,27(6), 637-639. Kaplan, S. P. (1990). Social support, emotional distress and vocational outcomes among person with brain injuries. Rehabilitation Counseling Bulletin, 34, 16-23. Kortte, K., Gilbert, M., Gorman, P., & Wegener, S. (2010). Positive Psychological Variables in the Prediction of Life Satisfaction After Spinal Cord Injury. Rehabilitation Psychology, 55(1), 40-47. Kortte, K., Stevenson, J., Hosey, M., Castillo, R., &. Wegener, S. (2012). Hope predicts positive functional role outcomes in acute rehabilitation populations, Rehabilitation Psychology, 57(3), 248-255. Lechner, S. C., Carver, C. S., Antoni, M. H., Weaver, K. E., & Phillips, K. M. (2006). Curvilinear associations between benefit finding and psychosocial adjustment to breast cancer. Journal of Consulting and Clinical Psychology, 74(5), 828-840. Lequerica, A. H., & Kortte, K. (2010). Therapeutic engagement: a proposed model of engagement in medical rehabilitation. American Journal of Physical Medicine and Rehabilitation, 89(5), 415-422. Masten, A. S., & Obradovic, J. (2006). Competence and resilience in development. Annals of the N Y Academy of Sciences, 1094,13-27. Matheis, E. N., Tulsky, D. S., & Mathesi, R. J. (2006). The relation between spirituality and quality of life among individuals with spinal cord injury. Rehabilitation Psychology, 51, 265-271. Pakenham, K. I. (2005). Benefit finding in multiple sclerosis and associations with positive and negative outcomes. Health Psycholology, 24(2), 123-132. Sigurdardottri, S., Andelic, N., Roe, C., & Schanke, A. K. (2014). Identifying longitudinal trajectories of emotional distress symptoms 5 years after traumatic brain injury. Brain Injury, 28(12), 1542-1550. Shin, J., Chae, J., Min, J., Lee, Chang-Uk., Hwang, S., Lee, B., Han, S., Ju, H., & Lee, Cha-Yeon. (2012). Resilience as a possible predictor for psychological distress in chronic spinal cord injured patients living in the community. Annals of Rehabilitation Medicine, 36(6), 815-820. Thompson, S. (1991). The search for meaning following stroke. Basic and Applied Social Psychology, 12, 81-96. Waldron-Perrine, B., Rapport, L. J., Hanks, R. A. Lumley, M., Meachen, S. J., Hubbarth, P. (2011). Religion and spirituality in rehabilitation outcomes among individuals with traumatic brain injury. Rehabilitation Psychology, 56(2), 107-116. White, J. H., Magin, P., Attia, J., Sturm, J., Carter, G., & Pollack, M. (2012). Trajectories of psychological distress after stroke. Annals of Family Medicine, 10(5), 435-442.

Author Bios Brigid Waldron-Perrine is a rehabilitation neuropsychologist at the Rehabilitation Institute of Michigan and an Assistant Professor of Physical Medicine and Rehabilitation at Wayne State University School of Medicine. Jean Neils-Strunjas is a Professor and Department Head at Western Kentucky University in Communication Sciences and Disorders. Diane Paul, PhD, CCC-SLP, CAE, is the Director of Clinical Issues in Speech-Language Pathology for the American Speech-Language-Hearing Association. Allison N. Clark, a neuropsychologist, is Assistant Professor in the Department of Physical Medicine and Rehabilitation at Baylor College of Medicine, and Research Scientist at TIRR Memorial Hermann. Raksha Mudar is a speech-language pathologist and an Assistant Professor in Speech and Hearing Science at the University of Illinois at UrbanaChampaign. Melissa Duff is an Associate Professor in Communication Science and Disorders, Neurology, and Neuroscience at the University of Iowa. Kathleen T. Bechtold is rehabilitation neuropsychologist and an Associate Professor of Physical Medicine and Rehabilitation at Johns Hopkins School of Medicine. The Joint Committee on Interprofessional Relations between the American Speech Language Hearing Association (ASHA) and APA Society for Clinical Neuropsychology was established in 1989 to maintain a colloquial channel of communication and deal with a mutually developed agenda of concerns and to provide a mechanism of continued interaction between the groups. The committee is charged with providing information and recommendations/ guidelines for the cooperative and collaborative evaluation and treatment of persons with brain injury. The mission of this interdisciplinary committee, composed of clinical neuropsychologists and speech-language pathologists, is to: 1) Improve the clinical care of patients with congenital or acquired brain impairment by identifying and promoting assessment and rehabilitation practices that are both compatible with current neuropsychology knowledge and of demonstrable functional benefit to patients and their families; and 2) Foster communication and collaborative work between speech-language pathologists and clinical neuropsychologists for the benefit of both professions.

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Obituary

Professor Olga Svestkova, MD, PhD

It is with remorse that we share with the brain injury community the passing of Professor Olga Švestková, M.D., Ph.D. on December 13, 2018. Professor Olga Švestková was born in Levoča, Slovakia and graduated from the Faculty of General Medicine, Charles University in Prague in 1976. After graduating, she worked as a physician in the Department of Internal Medicine in Příbram and later at the Na Bulovce Hospital. In 1983-1984, she worked in Libya at the University Garyonis-Benghazi. Since 1985, she was employed as a physician at the General Teaching Hospital in Prague, Czech Republic. In 2004, she defended her doctoral dissertation thesis in Physiology and Pathophysiology at the 1st Faculty of Medicine in Prague. She joined the Department of Rehabilitation Medicine of the First Faculty of Medicine and General Teaching Hospital in 1991 rising to the position of Department Head in 2008. In 2008, she was designated Associate Professor of Kinanthropology and Stress Physiology at the Faculty of Physical Education and Sport of the Charles University. In 2018, Dr. Švestková was designated professor in this field and became a member of the Scientific Council of the Charles University.

Her clinical activities were wide – she was involved in the rehabilitation of patients with acquired brain injury, poliomyelitis, as well as rehabilitative care for geriatric patients. Dr. Švestková also had a strong interest and involvement with technology and robotic applications to neurorehabilitation. She worked for a long time as an adviser to the Ministry of Health and Ministry of Labor and Social Affairs. Dr. Švestková was involved in the creation of a network of the rehabilitation centers in the Czech Republic and introduced the concept of comprehensive rehabilitation. Due to her efforts, the Czech legislation stipulated that inpatient departments must provide early rehabilitation as a part of any comprehensive stroke center. In 2001, she was designated as a member of the WHO Working Group for Co-operation with the WHO, and subsequently a WHO working ICF group in the Czech Republic. Thanks to her immense drive and collaboration with Professor Pfeiffer, this classification was translated into Czech language and accepted into use in 2001. She was a member of IBIA and served on the Board of Governors since 2014 until the time of her death. She also was a member of several prior international planning committees for IBIA World Congresses and served on the Editorial Board of Brain Injury Professional. Dr. Švestková was a member of numerous other scientific organizations. She continuously sought further education and professional experiences via visits to universities and hospitals in many European countries, the US, Canada, Israel, and some African countries. She lectured internationally, organized dozens of conferences and seminars with experts from around the world including EU countries, in cooperation with WHO and the European Commission. She was a prolific author of peer reviewed articles, monographs and textbooks. Dr. Švestková received many awards during her professional career, among including, the Prize for Exceptional Contributions to the Care of Persons with Brain Injury by the Czech Minister of Health in 2009. Students and colleagues who were lucky enough to have worked with her, drew on her broad vision, humanistic approach and boundless energy. She treated her patients with compassion, empathy and with an attitude that promoted hope. Several of her accomplishments more specific to brain injury neurorehabilitation included: • • • • •

1998–2016, she obtained grants for people after brain injuries from the Ministry of Health of the Czech Republic to support day programming. She organized together with the International Brain Injury Association and First Faculty of Medicine at Charles University, the Conference “Family and Professional Education and Training series on Brain Injury Rehabilitation“, 5/4-6/98 in the Department of Rehabilitation Medicine at Charles University. In 1999, she founded the First Day program for people with acquired brain injuries in the Czech Republic in the Department of Rehabilitation Medicine, Charles University. Dr. Švestková in cooperation with the International Brain Injury Association and First Faculty of Medicine Charles University, invited experts to share their knowledge with her staff and regional colleagues including Professor Anna Lise Christensen and Professor Nathan Zasler, among others. 2017–18, she obtained ongoing grants from Czech Health Insurance System interested in payment of new methods of early rehabilitation in patients after brain injuries.

Obviously, Dr. Švestková was greatly respected by her colleagues in the Czech Republic and in the EU in general. She did much to advance the care of persons with acquired brain injury and will be very much missed by those who worked with her, her patients and their families as well as by the international brain injury community who had the pleasure of knowing her. She is survived by her husband, Dr. Jiří Švestka, PhD and her son Patrik Švestka. Nathan Zasler, MD Vice-Chairperson, IBIA

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2002 – 2005. He is also the author of two novels on brain injury, Crashing Minds and Concussion is Forever.

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Restore-Ragland

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Restore Neurobehavioral Center is a residential, post acute healthcare organization dedicated exclusively to serving adults with acquired brain injury who also present with moderate to severe behavioral problems. Services range from intensive inpatient neuro-rehabilitation and transitional community re-entry services to long term supported living services. Restore Neurobehavioral Center, located in a suburb north of Atlanta, is the site of our inpatient post acute neuro-rehabilitation program as well as one of our supported living sites. We operate two other community living sites, Restore-Lilburn (GA) and Restore-Ragland (AL).

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Post-acute Transitional Residential Rehabilitation and Changes in Decision-Making Capacity Margaret Kroese, MSSW • Martin J. Waalkes, PhD, ABPP, CBIST

Post-acute transitional residential rehabilitation (TRR) is an intensive, post-hospitalization rehabilitation service model that focuses on functional recovery and disability mitigation. TRR programs provide highly integrated therapy interventions in order to maximize recovery and actively build the supports needed in the home community upon discharge. The goal of TRR is to restore a person to their most independent level of functioning. By necessity, TRR is both intense in duration and activity. Postacute programs provide formal treatment for up to six hours per day, at least five days per week. Additionally, Rehabilitation Aides reinforce the treatment goals during morning and evening routines, as well as throughout all other activities of daily living. Treatment length varies based on the person’s needs, but typically is between 60 – 90 days. While not hospital based, TRR is experienced as an inpatient program, meaning the participant typically lives within the treatment program for the duration of care. The treatment environment and distinct population characteristics found in the post-acute brain injury rehabilitation setting present unique ethical challenges relevant to patient decision-making capacity. Sustaining a brain injury results in readily apparent changes like physical and language changes, as well as less obvious changes like slowed thought, limited judgment or insight, and impaired memory. Cognitive consequences of the injury may affect a person’s ability to make informed decisions regarding medical treatment and lifestyle choices. In general, patients seeking medical care need the ability to understand information relevant to the medical decisions being asked of them, and to appreciate the consequences of any decision, or lack of decision, to be truly informed. Patients without this ability need a formal or informal decision maker to assist them. In postacute brain injury rehabilitation, persons being served may move from needing assistance to having independent decision-making capacity as they progress. Professionals in these programs must recognize, support, and respond to changes in capacity over the course of a treatment program. Early in recovery and during the adjustment to the profound changes of a severe brain injury, decision-making capacity is often absent.

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Concerns of initiating treatment and weighing the likelihood of benefiting from intervention are protected by proxy decision makers with little contribution by the patient in a minimally conscious or vegetative state. This condition alone, with the uncertainties of prognosis, provokes many questions of informed consent and rights to treatment (Fins, 2015). While less grave than life and death, serious questions of quality of life and the expression of individual preferences remain. As patients show signs of awareness and can communicate their values and desires, decision makers have an obligation to reflect these wishes in the decision-making process. Many people arrive at the post-acute level of care without the ability to determine their own course of treatment. Medical decisionmaking capacity that was significantly impaired in patients with moderate to severe TBI at the end of their acute care hospitalization can show substantial improvement and partial recovery of the abilities over a 6-month period (Marson, Dreer, Krzywanski, Huthwaite, DeVivo, & Novack, 2005). The changing level of a patient’s capacity observed as the injury and related symptoms resolve is a unique factor found in brain injury rehabilitation. A person’s decisional capacity is a clinical determination by a qualified medical professional, typically a psychologist or physician with background and training in this area of assessment. While considering the person’s capacity, the psychologist or physician must consider how the current medical treatment, cognitive status, and emotional, social, and contextual situation contribute to the current presentation (Hanson, Kerkhoff, & Bush, 2005). The Aide to Capacity Evaluation (ACE) is a frequently used structured interview assessment that can guide a thoughtful assessment of the domains of a capacity determination (University of Toronto - Joint Centre for Bioethics, 2003). A capacity assessment should determine the presence of the following: (1) the ability to understand the information relevant to the choice; (2) the ability to reason or rationally evaluate the choice; (3) the ability to appreciate the significance of the choice; and (4) the ability to communicate and maintain a choice (Wassenaar, 2013). The ability to understand the relevant information is a basic element in demonstrating capacity. Cognitive deficits in comprehension, memory, or attention, which are common in brain injury, may limit the ability to truly understand the situation and choices available.


Anosognosia (a lack of awareness of the injury or the resulting deficits) can influence the ability to appreciate the nature of the injury or the challenges it presents. The ability to reason refers to maintaining a decision-making process whereby information is weighed and compared in coming to a decision. Common symptoms of brain injury include impulsivity, irritability, memory problems, impaired reasoning, and problem solving. These and other cognitive-behavioral impairments influence decision-making quality. The ability to appreciate the significance of the choice relates to the ability to apply the consequences of the choice to one’s own life considering and integrating values and preferences. This is demonstrated by showing an understanding of the possible outcomes and implications of choices on the individual’s life relative to endorsed values. This type of reflective capacity requires perspective-taking and is often limited by brain injury. Communicating a decision requires being able to express your ideas and desires to another person. Survivors of brain injury may have difficulty expressing choice verbally due to muscle weakness or other physical consequences of brain injury. However, they may still express intact capacity of their choice by other means of communication, such as technological solutions. People who experience expressive aphasia (loss of the ability to formulate language) may be sufficiently limited in their ability to communicate choices as to require decision-making support simply to express their wishes. In some cases, variable awareness and fluctuating investment creates an instability of decision expression, requiring support simply to establish necessary consistency needed for treatment.

It is common to find a patient arriving from acute rehab exhibiting confusion, agitation, inconsistent orientation, and memory impairment.

Adding complexity to the post-acute setting, a person being served can maintain capacity in some areas of decision-making while not being considered to have capacity to make other decisions, and this can fluctuate from day-to-day (Wassenaar, 2013). Factors such as medications, external stresses, and mood or thought disorders can influence understanding, appreciation, and a rational decisionmaking process. Decision-making capacity is expected to change during early treatment for brain injury. To address this, most post-acute programs incorporate structured assessments, neuropsychological testing, behavioral observations, and patient interviews in an ongoing treatment model.

Multiple assessments over time indicate the change in capacity, and increases or reductions in need for assistance with decision-making. Treating patients with changing levels of capacity poses several ethical and programmatic challenges for TRR programs. In the acute phase of brain injury rehabilitation, it is common for a family member to serve as a proxy and make medical decisions for a loved one. Typically, this is done on an informal basis, without a legal determination of guardianship, as the person is easily presumed impaired, yet generally expected to regain capacity as they progress. By the time the individual is entering TRR, substantial medical improvement has been made allowing transition out of the acute hospital setting. However, individuals admitted to TRR may not have made enough gains in the cognitive and reasoning abilities to reassert independent decision making for medical and lifestyle decisions, making the decisional capacity question more nuanced. Often, treatment is provided with a degree of suspension of informed consent in a parental or educational effort under the presumption that a person who may be superficially refusing services may better appreciate their circumstances if they can be first supported sufficiently to recover some of their decisional capacity through rehabilitation (Caplan, Callahan, & Haas, 1987). Ironically, increasing levels of decision-making in the recovering person can create difficulty for families. While welcoming progress in the core skills supporting decision making, families may be hesitant to relinquish their role in making decisions. This dynamic can lead to conflicts between the rights of the person being served and the desires of family who may have invested immense amounts of time facilitating care during the early recovery stage. Not only does this create potential for family conflict, it also puts the rest of the treatment team in a difficult situation. While the team must be accountable to the person being served, ongoing family support is a key factor in successful long-term outcomes in brain injury rehabilitation, and alienation of the family support is unlikely in the best interest of the injured person (Vangel, Rapport, Hanks, & Black, 2005). Ideally, these conflicts can be avoided by offering proactive family education as well as family support groups throughout the healing process. Ultimately, the treatment team is responsible to the patient’s best interests and legal rights, regardless of the family’s concerns and desires. It is common to find a patient arriving from acute rehab exhibiting confusion, agitation, inconsistent orientation, and memory impairment. By discharge, many of these features will have resolved or be substantially reduced. With this progress, gains are observed in resulting decisional capacity. Along the way, the recovering person should reassume a decision-making self-leadership role, as they are able. A typical treatment team in TRR includes many treating professionals including a physiatrist, psychologist, physical therapist, occupational therapist, speech language pathologist, social worker, rehabilitation aides, and other disciplines as required. Each team member must adjust their treatment in order to actively transition the decision-making authority to the person being served as he or she demonstrates readiness. Excellent team communication is key to making this transition one that is coordinated and successful. Not everyone will progress enough during rehabilitation to be independent in decision-making and may, instead, require formal temporary or permanent guardianship. Typically, this path will not be pursued early in rehabilitation in the hopes that gains will be made, although determination at the early stage is more straightforward.

BRAIN INJURY professional 35


At some point, the treatment team will need a formal decision maker with full legal authority who can help establish the future plans of the individual. For those who show impulsivity or unawareness of their deficits, the issue of formal guardianship is often addressed earlier in rehabilitation in order to assist in participation and designating long-term support options. Treatment refusal can be a very good reason to seek formal guardianship for a person who does not demonstrate the capacity to make this choice. This, too, is a complex issue, as treatment refusal is a patient’s right and other factors can influence a patient in refusing treatment. Ongoing pain, medication changes and side effects, anxiety, depression, familial stress, and financial stress can all contribute to refusal of treatment, yet none of these on their own necessarily merit a loss of decision-making autonomy. Typically, a physician or psychologist will sort through all of the factors influencing treatment refusal and determine if any one, or any combination of reasons, rises to the level of concern that merits seeking formal assistance (Hanson, et al., 2005). Depending on the outcome of such evaluation, the program may determine that the team seeks the assignment of a guardian through a formal legal process with the probate court. A major goal of TRR is restoring the decision-making capacity of those being served in the program. In the most successful situations, individuals being served go from being passive participants in their rehabilitation, to being the leader of the team,

setting their goals, and indicating their desires for their treatment and lifestyle choices. Decision-making capacity, while simple in concept, is a complex issue that has serious implications for the success of the TRR experience. Professionals practicing in this area of medicine experience the unique challenge of adjusting treatment and relinquishing a parental style of treatment direction as the patient gains the ability to take on decision-making capacity. References Caplan, A. L., Callahan, D., & Haas, J. Ethical and policy issues in rehabilitation medicine: A Hastings Center report. Briarcliff Manor, NY: Hastings Center, 1987. Fins, J. J. Rights come to mind: Brain injury, ethics, and the struggle for consciousness. New York: University of Cambridge, 2015. Hanson, S. L., Kerkhoff, T. R., & Bush, S. S. (2005). Health care ethics for psychologists: A casebook. Washington, DC: American Psychological Association, 2005. Marson D. E., Dreer L. E., Krzywanski S., Huthwaite J.S., DeVivo M.J., & Novack T.A. Impairment and partial recovery of medical decision-making capacity in traumatic brain injury: A 6-month longitudinal study. Archives of Physical Medicine & Rehabilitation, 86, 889-895, 2005. University of Toronto - Joint Centre for Bioethics. Aide to Capacity Evaluation (ACE). Retrieved from http:// www.jcb.utoronto.ca/tools/documents/ace.pdf, 2003. Vangel, S. J., Rapport, L. J., Hanks, R. A., & Black, K. L. Long-term medical care utilization and costs among traumatic brain injury survivors. American Journal of Physical Medicine and Rehabilitation, 84, 153-160, 2005. Wassenaar, M. Ethical perspectives on assessing decision making capacity. Grand Rounds presentation at Mary Free Bed Hospital. Grand Rapids, MI, 2013, May 13.

Author Bios Margaret Kroese, MSSW, is the Executive Vice President of Hope Network Neuro Rehabilitation, a large post-acute and transitional residential rehabilitation provider located in west and central Michigan. She has served in this leadership role at Hope Network since 2002 and in brain injury rehabilitation since 1994. Ms. Kroese currently sits on the Executive Board of the Coalition Protecting Auto No-Fault and recently finished her term as the Past-President of the Michigan Brain Injury Provider’s Council. She has spoken at various workshops and conferences on the topic of brain injury rehabilitation, Michigan Auto No-Fault and the Affordable Care Act. Martin J. Waalkes, PhD, ABPP, CBIST, is a licensed psychologist who has been treating individuals with brain injury and spinal cord injury since 1990. He is a board-certified Rehabilitation Psychologist, as well as a Certified Brain Injury Specialist-Trainer. Dr. Waalkes is Director of Neuro Rehabilitation for Hope Network Neuro Rehabilitation where he is responsible for the development of programming and clinical services for transitional residential rehabilitation programs. He is a past vice-chair of the Michigan Board of Psychology, and has a doctoral degree in clinical psychology from Michigan State University. He is the Hope Network psychology department supervisor, providing clinical supervision and direct service in behavioral evaluation, individual therapy, cognitive and neuropsychological assessment, consultation, and support to patients and their families.

36 BRAIN INJURY professional


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Life Care Planning – An International Perspective Barbara Baptiste, MSc, CCRC, CLCP • Angela Kerr, RGN, MA Imagine building a house with no framework or design; you would not have a home. The Life Care Planner is often likened to a housing contractor and architect, because just as your home, a life care plan needs to be well planned, designed and constructed. Because of the diversity of needs and challenges that can follow brain injury (BI), many people are involved in the life care plan “building process.” Support needs and costs following (BI) are often life-long and go beyond direct medical care. It is especially important to understand the resources required to promote function and performance over the person’s lifespan. Life Care Planning, as it is practiced by Certified Life Care Planners (CLCP) in Canada, Care Experts in the United Kingdom (UK), and CLCP’s in the USA, all adhere to a specific methodology involving standards of practice, scope of practice, and Codes of Ethics. This enables life care plans that are comprehensive and consistent with well-reasoned practice and evidence. Key practices include careful review of all available records; meeting with the person experiencing disability; talking with treating professionals, consulting professionals and family, as appropriate; identifying personally appropriate and accessible services, along with associated charges; and practicality in recommendations relative to personal capacities and lifestyle. Effective plans delineate the objectives, steps, resources, and timing associated with all services and supports required for the person’s life. Given the notable differences in health service delivery systems, it is not unusual for people to ask why a life care plan is needed for individuals with disability due to BI in Canada and the UK.

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Both Canada and the UK have access to basic healthcare that is funded via public rather than private means. All hospital and most primary services are universally available to all citizens and permanent residents of each country; essentially from the beginning to the end of life. Because of this public funding, the “patient” does not see a bill for hospital treatment or medical monitoring visits at a doctor’s office (Health Canada, 2016). Access to such healthcare is considered a basic right; much like primary and secondary education is in our mutual countries. Hence, in both Canada and the UK, no one “goes broke” if they have a serious health condition, or less. In this article, we describe our two “sister” systems in Canada and the UK. This includes how life care planning is practiced as a professional sub-specialty of rehabilitation in these two countries, and why uncovered care costs can still be substantial and need to be discerned, despite “universal” access.

The Functional Approach Adding the concept of function as a key component of what constitutes a “health condition” was a fundamental part of international changes that the World Health Organization (WHO) instituted in 2001. The WHO’s International Classification of Function (ICF) frames health issues as those that occur beyond hospitals and direct medical care (World Health Organization, 2001).


The ICF considers activities a person can or cannot perform and the person’s participation level (domestic chores, childcare, intimate relations, school, work and community association participation). Importantly, function was framed to include personal and environmental factors, nested within the grouping called “contextual factors”; considered an integral component of health. This means that the psychosocial, behavioural, relationship and environmental components of BI, as well as specific challenges emanating from such factors are all part the functional approach in a life care plan. Typically, these are mostly the “invisible” areas of performance following BI and are too easily neglected when care costs focus strictly on physical function. This systematic analysis of functional factors provided by the ICF is universally available to all professionals seeking an evidencebased direction (Law 2002). This improves the homogeneity of emerging life care planning research. Multiple functional losses and/ or capacity variations following BI result in notable life changes that often require a variety of supports that can incur significant cost. These costs are medically justified but not specifically “medical” in nature. More often than we like to acknowledge, the responsibility for addressing these functional losses are carried by family, friends and other community members; especially for people with disability following BI who are based in the community. When these longterm needs and costs are overlooked, the person with BI risks future safety concerns, secondary complications (including social marginalization, mood disorders, and addictions) as well as re-injury. The “chain of risks” frequently needs to be mediated by access to long-term supports. Otherwise, one problem or situation can lead to another. For example, the risk of a fracture from a fall due to balance issues, or addiction due to impulse-management problems.

Canadian Care Costing By definition a life care plan is “dynamic” (Weed and Berens, 2010), likewise, Canada’s publicly funded health care system is dynamic. The overall term for the Canadian care system is “Medicare,” not to be confused with Medicare programs in the USA. There have been a number of changes since Medicare was introduced in 1968 and changes will likely continue in response to changes within medicine and throughout society. Concurrently, this evolution also occurs in the field of life care planning at both individual and at systems levels. Regardless of the dynamic features of Medicare, the basics for Canada’s healthcare remain the same, i.e., universal coverage for medically necessary health care services is provided on the basis of need, rather than the ability to pay (Health Canada, 2016). This universal access is mostly perceived as social advancement by Canadians, as it reflects this country’s values of fairness and equity and is fundamentally similar to the UK with regard to healthcare access. However, we are aware that universal health coverage has been an area of political and social struggle in the US. More recently, threats to the Canadian public health system by multinational corporations and private clinics bankrolled by business interests have also become regarded as a real risk (Canadian Doctors for Medicare, 2016). What happens when health problems continue beyond the direct medical needs and negatively impact a person’s life trajectory and future function? In Canadian law, there were a series of cases in 1978, known as “the trilogy” where the Supreme Court outlined Canadian law on costs of future care (Klinger, et al., 2004). The court stated that the award for future care is based on what is reasonably necessary to promote the mental and physical health of the plaintiff (Slater, 2012).

Geographic location, such as what province a person lives in is always a factor. In Canada, each province individually administers, implements, plans, and negotiates fees separately while meeting the national principles set out under the Canada Health Act (Canada Health Act, 2016). Whenever, a region within that province has disparity with regard to available services (such as low density populations or physically restrictive areas) it adds another factor for the life care planner to consider. Support needs in Canada fall under supplementary supports and not direct medical care. Typically, home and continuing care services are not covered by the Canada Health Act; however, the provinces and territories provide and pay for certain home and continuing care services. These include services for seniors, children, low income residents; and range from dental/prescription to physical therapy. The federal department of Veterans Affairs Canada provides home care services to certain veterans if they are not available through their province or territory. In addition, the federal government provides home care services to First Nations people living on reserves and to Inuit in certain communities (Health Canada, 2016). Even with available primary medical coverage, as well as some rehabilitation coverage, there are often other substantial lifetime supports that a person with BI needs in order to function in the community. Typically, these are not part of the province’s health plan. Overall, public funding for supplementary supports is not available on a consistent or long-term basis and eligibility needs to be routinely proven. These recurring assessments preclude the establishment of long-term support planning through public sources. As a result, such supports are clearly identified within a Canadian life care plan and costed at market rates. In general, gratuitous supports by family and friends offer no guarantees of appropriate or enduring services, and are therefore not considered a valid approach for life care planning. Much as in the USA, life care plans provide a disciplined and valued approach in TORT actions, but can also be used for nonTORT purposes, since they provide articulate long-term blueprints following any catastrophic health condition. In both situations, they specifically identify needed treatments and services, as well as reliable providers. In Canada, as in the USA, each life care planner is required to complete structured training in the basic methodology and tenets required to prepare a comprehensive plan and then pass certification examinations. Canadians who received certification after 2005, are classified as a Canadian Certified Life Care Planner (CCLCP), while those certified before 2005 are typically classified as a Certified Life Care Planner (CLCP).

The UK Experience Citizens of the UK proved themselves demonstrably proud of their National Health Service (NHS) when London hosted the summer Olympics. However, the vast majority of people who enter NHS services as a patient are often completely unaware of the clinical pathway they enter. The appointed pathway guides them through treatment programmes and then back into the community. For those with long-term care needs, the National Framework for NHS Continuing Healthcare and NHS-Funded Nursing Care is key. This is not only a vehicle for long term care, but it is also important as an interface to a number of other care pathways across health and social care services.

BRAIN INJURY professional 39


Following hospitalization, patients are discharged home and often provided with limited services. Vital therapy is invariably provided on a minimum session basis for a fixed period of time. The patient is then discharged to the care of his or her general practitioner who will refer them back for additional services if needs change. Quite often, this turns into a vicious cycle of “toing and froing” through healthcare provision. For individuals who experience disability following BI, accessing specialist treatment is often equivalent to a “post code lottery” (like a zip code in the USA), as required community-based services are either not available or insufficiently available. Some counties have local specialist units and community professionals such as occupational therapists, physiotherapists, speech and language therapists, and case managers experienced in the needs of people with BI. However, the number of sessions that specialist therapists provide are limited, which often truncates treatment efficacy. If a patient is pursuing a claim for damages, a joint agreement for privately funding services can be made via the Rehab Code (The Rehabilitation Code, 2016). In non-forensic cases the insurer, typically vehicle insurance or professional indemnity, will directly fund these services. When liability has been agreed in favour of the claimant in a lawsuit, the client then often has the means to privately pay for services above and beyond what is available via NHS and Local Authority. Historically, when resources were not available, a person with BI could end up in a unsuitable long term placement. The recent Care Act 2014, however, now gives local authorities clearer guidance as to their responsibilities to provide long-term care to patients with complex needs (Canada Health Act, 2016). To ensure that assessment is carried out in an appropriate and proportionate manner, the local authority must regard: (a) the wishes and preferences of the individual to whom it relates; (b) the outcome the individual seeks from the assessment; and (c) the severity and overall extent of the individual's needs (Reg. 3(2)). This new approach is outcome oriented and requires assessment techniques that are “flexible and can be adapted to best fit with the person’s needs, wishes and goals.” In situations of private funding, local authorities are still expected to provide an independent overview to ensure that clients are not being deprived of their liberty, and that their wishes and choices are taken into account. Even when all services are covered via private funding, insurers providing services through the rehab code and other payment sources historically fell into the trap of thinking that a fixed amount of sessions could be enough, without considering long-term support and maintenance programmes that may continue to be required. To prevent this, case managers are now often secured to pursue continuing assessment and manage ongoing treatment needs. In the process, case management has become an integral part of both public and private long-term care systems in the UK. Unlike the USA and Canada, the term “Life Care Planner” is not recognized in the UK and the same role is fulfilled by what is known as “Care Experts.” Care Experts are the main Registered Nurses or Occupational Therapists with experience in the field of Brain Injury. Case Example: A 14 year-old-girl who went into hospital for a routine tonsillectomy in 2003 suffered hypoxic brain damage during the surgery. This left her physically impaired, unable to manage any element of her daily life, limited limb function, unable to mobilise, fed via a stomach tube, incontinent and unable to communicate verbally. After a year of funded hospital care, she was discharged home to the care of her mother.

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Her mother was limited by her own disability as she was wheelchair dependent due to paraplegia. Public funds provided a day centre during weekdays with transportation. It also commissioned a care agency to provide awake staff care at night and 2-1 coverage in the morning and evening for her hygiene needs when she was not at the day centre. Unfortunately, the agency frequently couldn’t fulfil the care plan services. When this occurred, the burden of care constantly fell on the mother, which increased the mother’s own health concerns. A case was brought against the hospital for medical negligence and settled in 2014. As part of the compensation process, a case manager was initially appointed to try and improve the situation by liaising with the agency and sourcing house adaptations. Then, in October 2014, a Personal Health Budget (PHB) scheme was introduced nationally which enabled the young woman to appoint a provider who could employ a dedicated care team for her. The care plan, including cost of care, was approved by a government body. Services were expanded from this initial plan using compensation money from the lawsuit so that staff could double up during the evenings and weekends to enable her to attend youth clubs, take days out with her mother and have holidays. Needless to say, this young lady and her mother’s quality of life has been improved greatly.

Conclusion In both Canada and the UK, effective life care planning involves consideration of the multiple public and private funding streams that may be required in a case. It equally involves identifying available specialty resources with requisite knowledge about BI. As a result, both life care planners and case managers face significant challenges. Whereas case managers may principally focus on a client’s immediate needs, the life care planner, much like an architect, provides a longitudinal map that envisions the composite situation including changing needs across life stages and associated with aging. Public systems cannot and will not manage these integrated needs without the input of skilled professionals, and experienced and certified life care planners / care experts often fill this gap. Unfortunately, there are many areas where people still fall between the cracks in our systems and effective advocacy and service delivery can be an overwhelming task. Here, comprehensive life care plans can be one of the most valuable tools to individualize care needs for the person who experiences disability following BI, as well as for their families. In summary, long term care needs and supports that enable safe and effective function over a lifetime, and are within reason, can be a significantly costly component of healthcare for BI that is not covered through any public health plan in Canada or the UK. It is within this context that our countries share challenges for ensuring reasonable remuneration with strong and credible life care plans. Life care plans need to consider the context of the person’s particular life over their anticipated lifespan, possible changes and challenges to their condition over time, including possible degeneration, and the and the nature, culture, and personally relevant circles of support that define life quality.


References Canadian Doctors for Medicare [Internet]. Available from: http://www.canadiandoctorsformedicare.ca/, Accessed September 19, 2016. Canada Health Act [Internet]. Ottawa, ON: Government of Canada; 2016: http://laws-lois.justice.gc.ca/eng/acts/c-6/fulltext.html, Accessed September, 19, 2016. Health Canada. Canada’s Health Care System [Internet]. Ottawa, ON: Health Canada; 2012. Available from: http://www.hc-sc.gc.ca/hcs-sss/pubs/systemregime/2011-hcs-sss/index-eng.php, Accessed September 19, 2016. Klinger L, Baptiste B, Adams JR. Life Care Plans: an emerging area for occupational therapists. Canadian Journal of Occupational Therapy, 71(2):88-99, 2004. Law M. Outcomes in Evidence-Based Practice. in Evidence-Based Rehabilitation: A Guide to Practice, M Law (ed.), SLACK, Inc., Thorofare, New Jersey, 2002.

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Slater MJ. Future cost of care in Canada: Justice deserves something better. The Verdict, 132(Spring):49-58, 2012. The Rehabilitation Code [Internet]. London, UK: International Underwriting Association. 2016. http://www.iua.co.uk/IUA_Member/Publications/ Rehabilitation_Code.aspx, Accessed, September 5, 2016. Weed RO, Berens D E Life Care Planning: Past, Present, and Future in Life Care Planning and Case Management Handbook, 3rd edition, RO Weed & DE Berens (Eds.), CRC Press, Boca Raton, Florida. Pages 1-13, 2010. World Health Organization. The International classification for functioning, disability and health (ICF). Geneva, Switzerland: World Health Organization, 2001.

Author Bios Barbara Baptiste, MSc, CCRC, CLCP, is a Certified Life Care Planner and Canadian Certified Rehabilitation Counsellor. She has extensive experience in BI case management, as a forensic expert in life care planning and founded Rehabilitation Management Inc in 1987; www.rehabiltation.ca. Ms. Baptiste is a Past-President of the Ontario Brain Injury Association and past-Chair of the Pacific Coast Brain Injury Society (2004/5). She received the 2014 Outstanding Life Care Planner Educator award. Ms. Baptise earned a Masters in Rehabilitation Science from the University of Toronto, where she holds an adjunct clinical science role in the Department of Occupational Science and Occupational Therapy. Angela Kerr, RGN, MA, is Managing Director and Consultant Case Manager at AKA Case Management Ltd., in the United Kingdom. She qualified as a Registered General Nurse at Queens Medical Centre, University Hospital Nottingham in 1990 and subsequently read for an MA, with honors, in Art and Psychotherapy at Sheffield University. Ms. Kerr has certificates in Neurosurgical Neuromedical Nursing, Teaching and Assessing Clinical Practice, Counselling Skills and a Post-Graduate Certificate in Health Service Management. She is Chair of the British Association of Brain Injury Case Managers (BABICM). Ms. Kerr can be reached at Angela@akacasemanagement.co.uk.

13 - 16: IBIA 13th World Congress on Brain Injury, March 13-16, Toronto, Ontario. For more information, visit ibia2019.org. 13 - 16: North American Brain Injury Society 32rd Annual Conference on Legal Issues in Brain Injury, March 13 -16, Toronto, Ontario, Canada. For more information, visit nabis.org. April 4 - 7: AOTA Annual Conference & Expo, April 4-17, New Orleans, LA, USA. For more information, visit aota.org. 4 - 7: 13th World Congress on Controversies in Neurology, Madrid, Spain. For more information, visit comtecmed.com/cony/2019/. 11 - 14: AOCNR2019, Nanjing, China. For more information, visit aocnr2019.rehabmg.com.

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16: Family Matters: Understanding and addressing family needs after acquired brain injury, London, UK. For more information, visit abisolutions.org.uk.

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22 - 24: Neurorehabilitation and Neural Repair From Science to Evidence-based Practice, Maastricht, The Netherlands. For more information, visit neurorehabrepair.eu.

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22 - 24: 5th European Stroke Organisation Conference, Milan, Italy. For more information, visit eso-conference.org/2019.

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MARCH 3-6 2021 THE CONVENTION CENTRE DUBLIN DUBLIN, IRELAND

WWW.INTERNATIONALBRAIN.ORG


Pink Concussions: A New Non-Profit Addressing Sex and Gender Differences in the Brain Injury Community Katherine Snedaker, LCSW Research has shown women’s brains and brain injuries are different in a number of ways and not just identical to men in form and function. Yet decades ago, when scientific research began to identify significant sex differences in brain injury, due to the fact there are more men than women with brain injury, and the “adverse effect” of reproductive cycles of female lab animals on brain injury study, brain injury researchers almost solely focused on men and male lab animals applied their male findings to females. Yet while in smaller number than men, women still suffer brain injury from sports, domestic violence/assaults, accidents and military service. And when seeking care, the lack of sex and gendered medical information seriously inhibits diagnosis and intervention and support across the care continuum and affects the development and provision of appropriate healthcare services. When women, families, communities and doctors are made aware of these differences, they can improve the pre-injury education and post-injury care for females. In 2013, to address the general lack of awareness about sex and gender differences in the brain injury community, Katherine Snedaker, a social worker, built a website featuring current and past peer-reviewed research which illustrated these differences. She created an easy-to-use website to meet the needs for female patients, families as well as the medical community, and called it, PINK Concussions. As the website brought more and more interest from patient and professionals, Katherine saw the need to expand her efforts and launched PINK Concussions as a 501c3 in 2015. Pink Concussions became first non-profit to focus on female brain injury including concussions from sport, domestic violence, accidents or military service. PINK Concussions mission is to educate the general public as well as civilian and military medical professionals on the sex and gender differences in female brain injury in order to improve the pre-injury education and post-injury care and support for women and girls. To fulfill this mission in the medical and science communities, PINK Concussions organizes international conferences of brain injury experts and researchers to share data and further scientific discovery. In the past three years, PINK Concussions has organized six International PINK Concussions Summits on Female Brain Injury where top experts in their fields present brain injury research with a focus on sex/gender differences in sport, military, domestic violence and accident data.

PINK 1 The PINK Concussions International Summit on Female Concussion and TBI was the first ever stand alone event on Female Brain Injury and was hosted by Georgetown University Medical Center on Feb 27-28, 2016, with 65 world class concussion and TBI experts presenting 25 papers and 40 posters for 220 participants.

PINK 2 The PINK Concussions Symposium Palo Alto was hosted by the Palo Alto VA Health Care System on October 7-8, 2016, with 35 world class concussion and TBI experts presenting 25 papers and 20 posters for 120 participants.

PINK 3 The PINK Concussions Symposium at the World Brain Injury Congress 2017 was hosted by International Brain Injury Association on Sunday, April 2, 2017, in New Orleans, LA.

PINK 4 The PINK Pediatric Summit in Rome was hosted by International Paediatric Brain Injury Society in Rome, Italy, and was the first ever summit to focused on brain injury in girls and young women under the age of 25, as well as Post Concussion Syndrome in females from an international prospective.

PINK 5 hosted by NABIS in Houston featuring Dr. Chris Giza as well as experts in sports, domestic violence and military brain injury.

PINK 6 Exploring Female Military Brain Injury hosted by the Tampa VA, featuring NCAA DoD Care Consortium – Report Sex and Gender in the Service Academies Data Set presented by Dr. Paul Pasquina, MD, USA (retired) Walter Reed, Chair, Department of Rehabilitation Medicine.

CTE in the Female Brain - Researching Answers for Women Athletes, Veterans and Brain Injury Survivors was the first summit on Female CTE, created by PINK Concussions and hosted by Mount Sinai Medical Center. Holding a PINK Concussions summit on Female CTE was an essential step to remind researchers to include women and female lab animals in CTE research, especially women with a history of multiple sub-concussive blows, victims of domestic violence. PINK Concussions also inspired and provided the female panel of patients for the NIH’s Workshop on Understanding Brain Injury in Females. This two-day event brought experts from the sports, military and top civilian health organizations. The resulting meeting summary paper has been published by NIH and is an excellent review of the topic.

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The next PINK event will be the PINK Concussions Summit on Female Brain Injury aka PINK 7 Toronto which will be hosted by IBIA. PINK 7 will be held on Wednesday, March 13, as a pre-con and feature top experts presenting evidenced-based research on sex and gender differences in female brain injury as well as panels of female patients sharing their lived experience of brain injury including concussions from sport, domestic violence, accidents or military service. These women and teens will share sound bites of their journey to illustrate key points and truly translate the learning objectives and the scientific research into clinical practice.

Through the PINK summits, press and awards, PINK Concussions is stimulating and inspiring brain injury research with sex and gender considerations, as well as inspiring women to pledge to donate their brains to brain banks via #PINKBrainPledge. Launched in January of 2018, by PINK Concussions, the #PINKBrainPledge was a collaboration with the Dept of Veteran’s Affairs’ National PTSD Brain Bank to recruit female veterans, activeduty members and civilians to be a part of brain injury and PTSD research. In the first year, more than 375 women, both civilian and veterans, pledged their brains with the #PINKBrainPledge.

If brain injury is the “invisible illness” of our time; and within this invisible injury, women are the invisible patients. – Katherine Snedaker, LCSW

Pink Concussions For more information PINK Concussions created and moderates ten online support groups for over 3,800+ members including separate groups for women, young women under age 25, caregivers/parents, as well as professional groups for clinicians who work in brain injury. All groups are free and moderated by founder and Licensed Clinical Social Worker LCSW, Katherine Snedaker. In 2018, PINK starting a support group specifically for women in the military/veterans.

For more information, see:

www.pinkconcussions.com

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literature of interest Neurosensory Disorders in Mild Traumatic Brain Injury 1st Edition Authors: Michael E. Hoffer (Editor),  Carey D. Balaban (Editor)

Pediatric Traumatic Brain Injury: Proactive Intervention, Third Edition Authors: Roberta DePompei,  Jean L. Blosser

Hardcover: 452 pages Publisher: Academic Press; 1 edition (December 20, 2018)

Paperback: 400 pages Publisher: Plural Publishing, Inc.; 3 edition (January 25, 2019)

Controversies in Severe Traumatic Brain Injury Management 1st ed. 2018 Edition

Concussion and Traumatic Encephalopathy: Causes, Diagnosis and Management

Author: Shelly D. Timmons (Editor)

Authors: Jeff Victoroff, Erin Bigler

Hardcover: 279 pages Publisher: Springer; 1st ed. 2018 edition (September 13, 2018)

Hardcover: 848 pages Publisher: Cambridge University Press (April 30, 2019)

To Root & To Rise: Accepting Brain Injury

Concussion, Traumatic Brain Injury, Mild TBI Ultimate Rehabilitation Guide: Your Holistic Manual for Traumatic Brain Injury Rehabilitation and Care

Author: Carole J. Starr Paperback: 226 pages Publisher: Spiral Path Publishing (May 25, 2017)

Coma and Disorders of Consciousness

Authors: Leon Edward, Dr. Anum Khan

Authors: Caroline Schnakers (Editor), Steven Laureys (Editor)

Paperback: 134 pages Publisher: 978-1-64516-902-4 (January 30, 2019)

Hardcover: 276 pages Publisher: Springer International Publishing AG; 2nd edition, 2018

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Raising the bar for inpatient and day

rehabilitation services

We offer: • An expansive Inpatient Rehabilitation Program – A spinal cord system of care, brain injury and pediatric specialty programs that have received CARF specialty recognition – A team of brain injury board-certified pediatric physiatrists – Comprehensive care for young patients from birth to age 21 – Therapy seven days a week – 28 private patient rooms • A Day Rehabilitation Program to assist patients during recovery • Technology-assisted therapy through our Center for Advanced Technology and Robotic Rehabilitation • A full-service hospital with emergency services

Learn more or make a referral:

© 2018 Children’s Healthcare of Atlanta Inc. All rights reserved. REH 11772.ck.12/2018

Children’s Healthcare of Atlanta is Commission on Accreditation of Rehabilitation Facilities (CARF)-accredited for pediatric rehabilitation services.

404-785-2274 choa.org/rehab

Children’s Healthcare of Atlanta has: Three hospitals • 27 neighborhood locations • 1 million+ patient visits per year

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PHOTO BY HERMAN PRIVETTE

Madison Schwartz, Stanford Law, Randall H. Scarlett, Randall A. Scarlett, Ronnie Pang, Olga Rios, Mary Anne Scarlett, and Brendan D. Nay.

SCARLETT LAW GROUP Scarlett Law Group is a premier California personal injury law firm that in two decades has become one of the state’s go-to practices for large-scale personal injury and wrongful death cases, particularly those involving traumatic brain injuries. With his experienced team of attorneys and support staff, founder Randall Scarlett has built a highly selective plaintiffs’ firm that is dedicated to improving the quality of life of its injured clients. “I live to assist people who have sustained traumatic brain injury or other catastrophic harms,” Scarlett says. “There is simply no greater calling than being able to work in a field where you can help people obtain the treatment they so desperately need.” To that end, Scarlett and his firm strive to achieve maximum recovery for their clients, while also providing them with the best medical experts available. “As a firm, we ensure that our clients receive both

the litigation support they need and the cutting-edge medical treatments that can help them regain independence,” Scarlett notes. Scarlett’s record-setting verdicts for clients with traumatic brain injuries include $10.6 million for a 31-year-old man, $49 million for a 23-year-old man, $26 million for a 7-year-old, and $22.8 million for a 52-year-old woman. In addition, his firm regularly obtains eight-figure verdicts for clients who have endured spinal cord injuries, automobile accidents, big rig trucking accidents, birth injuries, and wrongful death. Most recently, Scarlett secured an $18.6 million consolidated case jury verdict in February 2014 on behalf of the family of a woman who died as a result of the negligence of a trucking company and the dangerous condition of a roadway in Monterey, Calif. The jury awarded $9.4 million to Scarlett’s clients, which ranks as

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one of the highest wrongful death verdicts rendered in recent years in the Monterey County Superior Court. “Having successfully tried and resolved cases for decades, we’re prepared and willing to take cases to trial when offers of settlement are inadequate, and I think that’s ultimately what sets us apart from many other personal injury law firms,” observes Scarlett, who is a Diplomate of the American Board of Professional Liability Attorneys. In 2015, Mr. Scarlett obtained a $13 million jury verdict for the family of a one year old baby who suffered permanent injuries when a North Carolina Hospital failed to diagnose and properly treat bacterial meningitis that left the child with severe neurological damage. Then, just a month later, Scarlett secured an $11 million settlement for a 28-year-old Iraq War veteran who was struck by a vehicle in a crosswalk, rendering her brain damaged.

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