Interdisciplinary Issues in Contemporary Neurorehabilitation

BR A IN INJURY professional vol. 10 issue 4

The official publication of the North American Brain Injury Society

Interdisciplinary Issues in Contemporary Neurorehabilitation

BRAIN INJURY PROFESSIONAL

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contents

BRAIN INJURY professional vol. 10 issue 4

The official publication of the North American Brain Injury Society

north american brain injury society

departments 4 editor in chief’s message 6 guest editor’s message 32 legal spotlight 35 literature review

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 graphic designer Nikolai Alexeev administrative assistant Benjamin Morgan administrative assistant Bonnie Haynes

brain injury professional

38 legislative roundup

publisher J. Charles Haynes, JD Editor in Chief Ronald C. Savage, EdD Editor, Legal Issues Frank Toral, Esq. Editor, Legislative Issues Susan L. Vaughn Editor, Literature Review Debra Braunling-McMorrow, PhD Editor, Technology Tina Trudel, PhD founding editor Donald G. Stein, PhD design and layout Nick Alexeev advertising sales Megan Bell

features

EDITORIAL ADVISORY BOARD

34 non-profit news

8 How can Animal Research on Neuroplasticity Inform Human Rehabilitation?

By Lyn S. Turkstra, PhD 12 Utilizing Advanced Technologies to Achieve Motor Learning Principles in Individuals with Traumatic Brain Injury

By Candy Tefertiller, PT, DPT, ATP, NCS 16 “Tell, Don’t Ask”: Communicating with Patients with Acquired Learning and Memory Impairments

By Lyn S. Turkstra, PhD, CCC-SLP, BC-ANCDS and Lindsey Valitchka, M.S. 18 Rehabilitation and Context are Interrelated

By Harvey E. Jacobs, PhD, CLCP 20 Disorders of Consciousness: Basic Concepts to Guide Effective Clinical Practice

By Carrie Charney, MS, CCC-SLP and Joseph T. Giacino, PhD 22 Awaiting a Golden Age of Neurorehabilitation for Patients with Disorders of Consciousness

By Joseph J. Fins, MD, MACP 24 Traumatic Brain Injury Common Data Elements Project

By Cynthia Harrison-Felix, PhD and Geoffrey Manley, MD, PhD 28 Life Expectancy After TBI

By Cynthia Harrison-Felix, PhD 30 What is Life Care Planning?

By Harvey E. Jacobs, PhD, CLCP 32 Family Management: A Process Approach for Quality Outcomes

By Melissa Abate, LMSW, Kent Hamstra, MA, Becca Bixler, LCSW, and Alan Weintraub, MD

Michael Collins, PhD Walter Harrell, PhD Chas Haynes, JD Cindy Ivanhoe, MD Ronald Savage, EdD Elisabeth Sherwin, PhD Donald Stein, PhD Sherrod Taylor, Esq. Tina Trudel, PhD Robert Voogt, PhD Mariusz Ziejewski, PhD

editorial inquiries Managing Editor Brain Injury Professional PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Website: www.nabis.org Email: contact@nabis.org

advertising inquiries Megan Bell Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Email: mbell@hdipub.com

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 Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2013 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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editor in chief’s message

Ronald Savage, EdD

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BRAIN INJURY PROFESSIONAL

NABIS is pleased to feature Dr. Alan Weintraub, MD as the Guest Editor of this issue of Brain Injury Professional. Dr. Weintraub and his colleagues at Craig Hospital have always been at the cutting edge of brain injury rehabilitation and innovation. The authors in this issue were speakers at the Craig Hospital Brain Injury Summit last year. This meeting brings together the “best and the brightest” under Dr. Weintraub’s direction to share their expertise in neurorehabilitation and to exchange ideas about future directions in brain injury research, treatment, and long term care.

Dr. Weintraub, who was awarded the NABIS Innovation in Clinical Treatment Award two years ago, has always promoted research, efficacy, and innovation through interdisciplinary professional collaboration, including individuals and families at the

center of all we do as professionals.

As Dr. Weintraub stated at the NABIS Conference, “The key to successful rehabilitation is collaboration, hard work, and big thinking. And then more hard work!”

This past September, NABIS ran another very successful conference for professionals in brain injury rehabilitation.

The NABIS Board of Directors has also made a decision to move the annual conference to a Spring agenda and avoid the “Fall Crush” that befalls all of us. Starting in Spring 2015 in San Antonio, NABIS will continue its annual conference meeting and “moving brain injury science into practice.”

The NABIS Legal Conference will hold a special session at the IBIA World Congress in San Francisco in March 2014.

Ronald Savage, EdD

A brain injury doesn’t have to be a disability.

In each patient we only see capability, viability, possibility, mobility, sustainability, ability.

For over 30 years Centre for Neuro Skills (CNS) has been recognized as an experienced and respected world leader for providing intensive postacute community based brain injury rehabilitation. With facilities in Texas and California, CNS’ highly trained staff offers outcome driven medical treatment, therapeutic rehabilitation and disease management services for individuals recovering from acquired and traumatic brain injury. We’re the bridge to a meaningful recovery. For additional information about Centre for Neuro Skills, please visit us at neuroskills.com or call us at 800.554.5448.

BRAIN INJURY PROFESSIONAL

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guest editors’ message

Alan Weintraub, MD The catastrophic and life changing consequences of Traumatic Brain Injury (TBI) can be devastating to individuals, their families and our society. Despite an explosion of neuroscience and TBI clinical research in this 21st century, we as a specialized field of Neurorehabilitation still have a long way to go.

This issue of Brain Injury Professional highlights a potpourri of contemporary topics, which were presented, at the 2012 Brain Injury Summit hosted by Craig Hospital in Beaver Creek, Colorado. The focus of this interdisciplinary conference was to gather national experts and rising leaders within the field of Brain Injury Medicine and Rehabilitation to explore cutting edge evidence informed clinical practices across the continuum of acute care, rehabilitation and life.

Dr. Lyn Turkstra’s opening article sets the stage for how we can employ what we know from animal research into innovative rehabilitation. The description of the “Big Ten “ key principles of neuroplasti-

city learned from animal research will leave the reader with curious intentions as they implement functionally based and goal oriented treatments for the patients they serve.

While mechanisms of neuroplasticity serve as the theoretical underpinning for recovery, new learning and skill acquisition, Candy Tefertiller PT, DPT takes us through this burgeoning research and clinical field related to motor learning in the next article. In an era of advanced and expensive technologies such as FES, Biofeedback and Robotics, Dr. Tefertiller explains the rational use of these tools.

In the next article, Dr. Turkstra and Lindsey Valitchka MS address memory and new learning strategies utilizing procedural and error-free concepts practical for any rehabilitation setting. Furthermore in Harvey Jacobs PhD, next article we are taught the importance of “relevance and context “of an individual’s experience in all phases of rehabilitation in order to be most effective.

Severe TBI often results acutely in a spectrum of disordered consciousness (DoC). This often leads to a dynamic of uncertainty for clinicians and the patients and families we serve. Joe Giacino PhD and Carrie Charney MS, CCC-SLP in the next article offer a succinct review of a multidisciplinary systematic approach to objective assessment necessary to inform prognosis, evidenced informed clinical treatments and decision making. As a bonus to this important topic, Joe Fins MD in a spell binding neuroethical narrative, discusses access to medical care, rehabilitation and resources for this severely injured patient population. Dr. Fins also sensitizes the readership to the holistic nature of managing DoC related to families and our society within a changing health care culture.

A challenge in advancing the science of TBI rehabilitation and effective clinical practice is the “heterogeneity “of this complex diagnosis. Cynthia HarrisonFelix PhD and Geoffrey Manley MD, PhD bring us an overview of the Common Data Element (CDE) project and the multidimensional ingredients for defining this injury based on demographic characteristics, biomarkers, imaging and salient outcome measures. In the next article, Dr. Harrison-Felix provides important life expectancy data from 4 relevant studies exploring survival and risk factors for individuals with TBI. Our final two articles work synergistically as Dr. Harvey Jacobs takes an innovative multidimensional perspective on life care planning. However, optimal life satisfaction outcomes cannot be accomplished without expertise managing families.

Therefore in the final essay, Melissa Abate LMSW, Kent Hamstra MA and Becca Bixler LCSW present an 8 step approach to working with families from injury onset and developing a conceptual ‘blueprint “for keeping expectations aligned over the continuum of care and life.

As guest editor, I’d like to gratefully acknowledge and thank the authors for their presentation at the 2012 Brain Injury Summit and their contribution to this issue of Brain Injury Professional. I also want to thank NABIS and our readership for their commitment to innovative collaboration in our quest to learn the most efficacious practices of TBI Neurorehabilitation. We look forward to having you join us at the 2015 Brain Injury Summit in Vail, Colorado, January 11- 14, 2015 and continue this meaningful dialogue.

Alan Weintraub, MD

about the guest editor Alan Weintraub, MD has been Medical Director of the Brain Injury Program at Craig Hospital since 1986. Dr. Weintraub also serves as the Medical Director for the Rocky Mountain Regional Brain Injury System, a federally designated Model System of Care with extensive clinical, research and dissemination activities. Over his tenure in the field of Traumatic Brain Injury Care and Rehabilitation, Dr. Weintraub has served as Medical Director of post acute residential brain injury programs and several long term subacute brain injury programs. He also is an Assistant Professor at the University of Colorado Health Sciences Center and an active consultant to the Colorado Division of Worker’s Compensation 6

BRAIN INJURY PROFESSIONAL

Medical Treatment Guidelines TBI Task Force. In 2011, Dr. Weintraub received the prestigious North American Brain Injury Society ( NABIS ) award for Innovative Clinical Treatment. Dr. Weintraub has special interests in pharmacological management of adults with brain injury, spasticity, sports-related concussion and the long term consequences of brain injury. He is actively involved in local, regional and national organizations and is devoted to the aging and long term needs of brain injured survivors and their families. For over 25 years, Dr. Weintraub has lectured extensively to broad audiences, and written on a number of specific clinical and research topics related to both traumatic and acquired brain injury.

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How can animal research on neuroplasticity inform human rehabilitation?

Lyn S. Turkstra PhD

The word “neuroplasticity” is being used to justify the use of everything from iPad apps to vitamins. In this article, we discuss the phenomenon of neuroplasticity and translation of findings from neuroplasticity research to human neurorehabilitation.

Readers interested in more detailed information are referred to reviews by Kleim and Jones1, Nudo2, and Kolb et al.3 Neuroplasticity refers to the brain’s ability to change in response to internal and external stimuli, which is critical not only for human development but also for our ability to maintain cognitive and sensorimotor function after neurons begin dying off in the fourth decade of life. Current concepts of neuroplasticity have their roots in animal research that began in the 1930s, with the demonstration by Hebb that neurons which “fired together, wired together”4. That is, repeated experience leads to long-term changes in connections among neurons in the brain, so that it is not necessary to grow new neurons to express new brain functions. We now know a great deal about how these connections develop (or not), and also have good animal data and emerging human data linking brain changes to changes in behavior.

In April 2005, Dr. Leslie Gonzalez Rothi convened a Workshop in Plasticity and NeuroRehabilitation Research, to identify key factors influencing neuroplasticity in animal models of injury and stroke, and create a research agenda for translation to human rehabilitation. The workshop generated the Kleim and Jones paper listed above; a series of translational articles 8

BRAIN INJURY PROFESSIONAL

related to rehabilitation of language5, motor speech6, and swallowing7; and a set of 10 principles of neuroplasticity derived from animal research that potentially could be applied to human rehabilitation. The “Big 10” principles are as follows: Use It and Improve It

A substantial body of animal research has confirmed what therapists have known since the advent of rehabilitation after World War II: practice makes better, if not perfect. Seminal work in this area was completed by Nudo and colleagues8, in animals with unilateral cortical stroke. These authors reported reorganization of the cortical representation of the body after high-frequency practice of limb movements in the chronic stage post-injury, a phenomenon that has since been measured in humans using functional imaging.

Use It or Lose It

Animal research has shown conclusively that failure to use a cognitive or sensorimotor function leads to brain changes that can limit future use of that function. Perhaps the bestknown example is the learned “non-use” that motivated current constraint-induced therapy approaches, originally observed by Edward Taub in the 1970s9 in nonhuman primates and subsequently translated to human rehabilitation. Learned non-use may begin in the early stage post-stroke: Feeney and colleagues10 found negative effects on recovery of restricting

movements of rats and cats in the first few days after stroke or administering chemical restraints such as Haldol. The worst outcome was when the animal had both physical and chemical restraints, which has implications for acute management of patients with TBI. Pascual-Leone and colleagues11 found that cortical maps of blind Braille readers changed after one day without reading, so it may not take weeks of non-use for brain changes to occur.

stimulus as to the frequency of occurrence, so very important stimuli may be learned in a single trial. In animal models, “salience” is mimicked by stimulation of brain structures such as the nucleus basalis15, or by linking learning to natural rewards such as food. In humans, a salient task might be something of biological importance to the patient, but also might be a task or stimulus that has psychological importance, such as remembering inspiring words from a former patient.

Specificity

Age Matters

Not all experience is equally effective in inducing change in brain functions. In animal studies, only skilled movements are associated with effective brain changes, whereas unskilled movements are not. The human analog might be approximate vs. exact performance of a task, with only the latter being associated with positive changes in brain functions. Changes also appear to be localized to networks involved in that function.

For example, training with the left upper limb induces changes in contralateral primary motor cortex, with only minimal changes in ipsilateral motor cortex. Thus, patient experiences must be carefully constructed and monitored.

Repetition Matters

In animal studies, brain changes typically occur only after many repetitions of the target behavior. For example, rats in the studies by Nudo and colleagues practiced for hundreds of repetitions each day, and for many consecutive days. As Nudo remarked2, this is quite different from human rehabilitation, in which motor tasks may be practiced tens of times rather than hundreds. Nudo also noted that animals, unlike humans, have controlled pre-injury training on target behaviors.

Intensity Matters

High-frequency practice must be intensive to induce plasticity.

For example, rats that completed 60 trials per day for 20 days did not show cortical reorganization after stroke12, whereas a similar number of repetitions over fewer days was effective2.

There are costs to high-intensity treatment, however, including the potential to overuse that function and worsen outcomes, as discussed next.

Time Matters

A critical variable in outcome from high-frequency and highintensity practice is time since injury. Animal studies have shown that intensive behavioral therapy in the acute stage post-injury may be detrimental to recovery, as increased neural activity at that time may augment injury-initiated neurodegenerative processes such as excitotoxicity, and increase lesion size13. This is supported by a study of upper-limb therapy in humans14, beginning at about one week post-stroke, in which patients who received 3 hours of intensive occupational therapy made less improvement than those who received two 2 hours. By contrast, high-intensity exercise in the chronic stage post-injury in animals appears to be effective.

The question is when “acute” ends and “chronic” begins in the human model.

Salience Matters

Learning is as related to the behavioral importance of the

Animal data show that effects of experience in the developing nervous system may be substantially different than in a mature nervous system. While there is strong evidence that training-induced plasticity occurs more readily in younger brains, not all change is good. For example, Shieh and colleagues16 observed that providing an enriched environment for young rats after brain injury was associated with increased dendritic density but no increase in dendritic branching. In other words, there was growth of brain elements but this growth was not necessarily functional. The authors noted that neurotransmitters have different functions during development than in mature systems, so injury and rehabilitation are likely to have different effects at different times. At the other end of the age spectrum, Stuntz and colleagues17 found that aspartame in the drinking water of aged rats had detrimental effects on sensorimotor recovery after stroke, whereas the same chemical had no effect in young rats, perhaps due to increased permeability of the blood-brain barrier associated with aging.

Transference

Transference refers to the phenomenon of plasticity within one set of neural circuits promoting concurrent or subsequent plasticity of others1. For example, Walker-Batson and colleagues18 showed that motor recovery after stroke was enhanced if physical rehabilitation was paired with amphetamine administration. Likewise, peripheral stimulation of swallowing muscles, when combined with exercise, may produce better recovery than either alone 7.

Interference

Neuroplasticity is not always adaptive. Interference is the notion that treatment of one skill may come at a cost to another. The most common example in rehabilitation is when a patient learns a bad habit that interferes with learning a good habit, but interference also may occur because of medications or other forms of stimulation that can reduce or block new learning.

Principles derived from animal research support many aspects of human rehabilitation. The leap from animals to humans is enormous, however, and clinicians are encouraged to think critically about this research when applying results to patients. Human injury and rehabilitation differ from animal models in meaningful ways, including fundamental interspecies differences such as the timescale of development and aging, percent of the brain that is primary vs. association cortex, and whether the animal has the capacity for the types of thinking (and communication) that are treated in human rehabilitation, to methodological differences in mechanisms for inducing injury, the nature of the physical and social enBRAIN INJURY PROFESSIONAL

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vironment, and characteristics of “rehabilitation”.

Animal data do however provide strong support regarding the potential for long-term improvements in cognitive and sensorimotor function after acquired brain injury. Results of animal research have great potential to inform human rehabilitation and stimulate ideas for future translational human research. With the advent of injury models that better mimic the human condition, and the development of more sophisticated methods for measuring outcomes, we can look forward to continuing to learn from animal research in the foreseeable future.

References 1.

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Kleim JA, Jones TA. Principles of experience-dependent neural plasticity: implications for rehabilitation after brain damage. Journal of Speech Language Hearing Research. Feb 2008;51(1):S225-239.

Nudo RJ. Neural bases of recovery after brain injury. Journal of Communication Disorders.

Sep-Oct 2011;44(5):515-520.

Kolb B, Muhammad A, Gibb R. Searching for factors underlying cerebral plasticity in the normal and injured brain. Journal of Communication Disorders. Sep-Oct 2011;44(5):503514.

Hebb DO. The organization of behaviour. New York: Wiley; 1949.

Raymer AM, Beeson P, Holland A, et al. Translational research in aphasia: from neuroscience to neurorehabilitation. Journal of Speech Language Hearing Research. Feb 2008;51(1):S259-275.

Ludlow CL, Hoit J, Kent R, et al. Translating principles of neural plasticity into research on speech motor control recovery and rehabilitation. Journal of Speech Language Hearing Research. Feb 2008;51(1):S240-258.

Robbins J, Butler SG, Daniels SK, et al. Swallowing and dysphagia rehabilitation: translating principles of neural plasticity into clinically oriented evidence. Journal of Speech Language Hearing Research. Feb 2008;51(1):S276-300.

Nudo RJ, Wise BM, SiFuentes F, Milliken GW. Neural substrates for the effects of rehabilitative training on motor recovery after ischemic infarct. Science (New York, N.Y. 1996;272:1791-1794.

Taub E, Crago JE, burgio LD, et al. An operant approach to rehabilitation medicine: overcoming learned nonuse by shaping. Journal of the Experimental Analysis of Behavior.

1994;61:281-293.

Feeney D, Gonzalez A, Law W. Amphetamine, haloperidol, and experience interact to affect rate of recovery after motor cortex injury. Science (New York, N.Y. 1982;217:855-857.

Pascual-Leone A, Wassermann E, Sadato N, Hallett M. The role of reading activity on the modulation of motor cortical outputs to the reading hand in braille readers. Annals of neurology. 1995;38(6):910-915.

Luke LM, Allred RP, Jones TA. Unilateral ischemic sensorimotor cortical damage induces contralesional synaptogenesis and enhances skilled reaching with the ipsilateral forelimb in adult male rats. Synapse. Dec 15 2004;54(4):187-199.

Humm JL, Kozlowski DA, Bland ST, James DC, Schallert T. Use-dependent exaggeration of brain injury: Is glutamate involved? Experimental Neurology. 1999;157:349-358.

Dromerick AW, Lang CE, Birkenmeier RL, et al. Very Early Constraint-Induced Movement during Stroke Rehabilitation (VECTORS): A single-center RCT. Neurology. Jul 21 2009;73(3):195-201.

Kilgard MP, Merzenich MM. Cortical map reorganization enabled by nucleus basalis activity. Science. 1998;279:1714-1718.

Shieh EY, Giza CG, Griesbach GS, Hovda DA. Lateral fluid percussion injury followed by rearing in enriched environment increases cortical dendritic density (Abstract). Journal of Neurotrauma. 2000;17(10):986.

Stuntz PM, Hart CL, Barth TM. Detrimental effects of aspartame on behavioral function in “at risk” populations [Abstract]. Journal of Neurotrauma. 2000;17(10):973.

Walker-Batson D, Smith P, Curtis P, et al. Amphetamine paired with physical therapy accelerates motor recovery following stroke: Further evidence. Stroke. 1995;26:2254-2259.

Shih JJ, Cohen LG. Cortical reorganization in the human brain: how the old dog learns depends on the trick. Neurology. Nov 23 2004;63(10):1772-1773.

About the Author

Lyn Turkstra, PhD is a Professor in the Department of Communication Sciences and Disorders and faculty member in the Neuroscience Training Program at the University of Wisconsin-Madison. She studies the effects of cognitive impairments on communication outcomes after acquired brain injury, and is a participant in developing national and international evidence-based practice guidelines for rehabilitation of cognition and communication after brain injury.

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“Our goal is to provide the highest quality, individualized transitional and long term care for persons with acquired brain injury.”

Nathan D. Zasler, MD Founder, CEO & Medical Director Tree of Life Services, Inc.

Chief Editor Nathan D. Zasler, MD

www.Tree-of-Life.com 1-888-886-5462 • Fax 804-346-1956 Administrative Offices BRAIN INJURY PROFESSIONAL 11 3721 Westerre Parkway, Suite B • Richmond, Virginia 23233

Utilizing Advanced Technologies to Achieve Motor Learning Principles in Individuals with Traumatic Brain Injury

Candy Tefertiller, PT, DPT, ATP, NCS

Traumatic Brain Injury (TBI) often leads to a diverse assortment of impairments that include limitations in mobility, cognition, activities of daily living, and communication among others. This damage to the central nervous system (CNS) often interferes with the individual’s ability to plan, control and regulate movement appropriately. In combination with other treatment goals, much of an individual’s rehabilitation program is focused on improving mobility and specifically on enhancing motor control through the facilitation of motor learning and re-learning principles. Motor learning is the study of the acquisition and or modification of movement whereas motor re-learning brings this into the context of injury.

Neurological Rehabilitation is based on the foundation that appropriate practice and experience are required to produce relatively permanent changes in the capability for creating skilled action after a CNS injury. Motor learning emerges from a complex combination of perception-cognition-action processes. It also involves the search for a task solution, which emerges from an interaction of the individual with the task and the environment1.

Neuroplasticity, the ability to rearrange the functional and anatomical connections of the nervous system after a neurologic insult2, is considered to be the foundation for both learning in the intact brain as well as re-learning in a damaged brain. Fundamentally, motor re-learning after a TBI is thought to rely on the same neurobiological circuitry as it did to initially acquire specific skills or behaviors.3 There is a significant body of literature in animals supporting activity dependent plasticity.

Rats, for example, are a complex animal whose body systems function similarly to humans in many aspects and they are also a desirable study animal because of their small size. Even the most dependent rat with a significantly injured CNS can easily be taken through normal movement patterns in efforts 12 BRAIN INJURY PROFESSIONAL

to facilitate activity dependent plasticity. However, facilitating activity dependent plasticity may be more of a challenge when working with humans who may be large in size, have varying degrees of paresis and tone abnormalities. Therefore, providing patients with an appropriate amount of movement pattern repetition at the intensity and dosage suggested in animal literature can be very difficult.

There has been an explosion of rehabilitation technology over the last ten years that can now aide therapists in providing intensive repetition and task specific training even for individuals who have severe neurologic dysfunction. These advancements in technology have had a significant impact on the way rehabilitation professionals can deliver care, but in the absence of sound clinical decision making these technologies may not positively impact an individual’s function. Therefore, it is important that therapists focus on implementing activity dependent plasticity principles in their treatment sessions while utilizing the appropriate technologies. This is overlaid with the suggested frequencies and intensities for individuals with CNS dysfunction including TBI to optimize outcomes. Kleim et al.4 reviewed principles of experience-dependent neural plasticity that rehabilitation professionals should consider when developing a plan of care to facilitate remodeling of the damaged brain in individuals who have sustained a TBI. This discussion will focus on how rehabilitation professionals can utilize advancements in emerging technologies to assist with implementing activity dependent principles when retraining the nervous and musculoskeletal system after injury or disease.

“Use it or lose it” is the first activity dependent plasticity principle proposed by Kleim et al.4 This principle refers to the fact that neural circuits will begin to break down if they are not actively engaged in intentional task execution. Dormant brain activity may lead to further loss of function has been

well-supported in both animal and human models.5, 6 There is also literature in humans supporting the ability to increase cortical activation after an injury with intensive training that results in functional recovery by shifting activation to residual brain areas that were not damaged with the original insult.7-9 Unfortunately, after a catastrophic injury, patients often spend the majority of their time during their first days and weeks of recovery in a supine or sitting position placing very little demand on their CNS. Giving significantly impaired individuals the ability to start moving in a purposeful and safe way after a TBI can be challenging. However, the emergence of commercially available technologies such as upper and lower extremity robotics, tilt tables with reciprocal stepping mechanisms, and functional electrical stimulation (FES) bikes can be used early in the rehabilitation process to begin facilitating normal movement patterns. Early implementation of these tools can potentially minimize the breakdown of neural circuits and assist in preventing the secondary complications associated with immobility such as atrophy, skin breakdown, and respiratory as well as gastrointestinal hypo activity.

Another principal of motor learning is repetition. Repetition or task practice of targeted goal behaviors is required in order to produce lasting changes in the nervous system that result in these behaviors becoming skills. Kleim et al10 found that map reorganization and synapse formation occurs only in the late phase of skill acquisition when skilled reach training was completed by adult rats. A primary goal of rehabilitation is to improve function and independence. It’s important that an ample amount of repetition is provided during therapy to translate an activity into a skill that patients employ outside of the therapeutic setting. In regards to walking recovery, locomotor training technologies utilizing body weight support and treadmills have gained in popularity in recent years and allow rehabilitation professionals the ability to provide the repetition of walking kinematics to individuals very early after a central nervous system injury. Treadmill based locomotor training systems utilizing body weight support rely on either on robotic orthoses to provide a consistent walking pattern or on the manual assistance of physical therapists and trainers to facilitate a “normal” walking pattern on the treadmill. Over ground body weight support systems are now available, but will often require additional technologies or assistive devices to achieve high levels of repetitive gait training. Robotic devices generally require a greater upfront financial investment while manual systems require increased labor costs over time.11 Although there are passionate groups on both sides of the argument, the evidence remains unclear as to whether there is a superior form of locomotor training for individuals with nervous system dysfunction. In a recent randomized clinical trial comparing robotically assisted locomotor training versus manually assisted locomotor training for individuals with TBI, no significant differences between groups in regards to gait velocity and endurance were found. However, these authors did find a statistically significant improvement for gait symmetry in the group trained utilizing the robot over the group who received manual training while both groups demonstrated significant improvement on the mobility domain of the stroke impact scale (SIS).12

“Use it and improve it” and “Task Specificity” are two more principles of activity dependent plasticity described

by Kleim et al.4 Technologies such as FES and whole body vibration (WBV) are demonstrating efficacy for increasing the activation of an impaired nervous system.13-19 Whole body vibration is believed to stimulate the tonic vibratory reflex and excite the spinal circuitry required for locomotion.

Studies have demonstrated that training individuals with CNS dysfunction utilizing WBV may result in reduced spasticity, improved muscle performance and result in greater walking speeds.13-19 FES, specifically when synchronized muscle activation with gait, may provide individuals the ability to train over ground walking function even when they are unable to step independently with an impaired limb. Studies have demonstrated a therapeutic carry over effect with FES such that benefits persist even after training has stopped.20-22 There is also evidence to support that appropriately patterned nerve stimulation may assist in reintegrating the reciprocal inhibition pathway providing improved motor control over disorganized spinal reflex activity.23, 24 Task specificity in the context of gait training refers to creating training sessions that closely mimic the constraints, patterns, and environment of the of desired skill. For example, movement patterns over a treadmill both with and without robotic assistance have been shown to differ from that over ground. Training in the goal environment with more patient initiated control of the pattern, although challenging early, is an essential part of advancing skills to the home and community. FES systems, over ground body weight support technology, and other assistive technologies can allow for gait training to occur in a more task specific environment even when someone may still have very limited independent mobility. In a recent systematic review of locomotor training, the authors reported that even though there didn’t appear to be a superior form of training for individuals with neurologic dysfunction, the additive effect of FES may be important for subacute and chronic populations25.

To achieve maximal outcomes, intensity of training is also an important component for rehabilitation professionals to consider.

Locomotor training utilizing a treadmill system with or without body weight support may provide individuals with higher intensities of training protocols. Moore et al26 demonstrated that individuals who were in the chronic phase of recovery after stroke and were discharged from traditional rehabilitation due to a plateau in progress, were able to significantly improve their walking speed, endurance and efficiency when they were trained on a treadmill at an intensity requiring them to reach 85% of their age predicted heart rate maximum. The authors of this study reported these improvements were directly related to the amount of intensity of stepping practice that had been achieved in the treadmill condition. Other studies have also demonstrated that training at higher speeds as compared to at or below normal walking velocities utilizing a treadmill system have resulted in improved walking capacity in individuals with central nervous system dysfunction.27, 28 An elliptical training device utilizing a body weight support system in combination with 12 channels of electrical stimulation has recently become commercially available and may provide another option for providing intense upright mobility training for individuals with central nervous system BRAIN INJURY PROFESSIONAL

13

dysfunction. In preliminary clinical utilization of this device at a specialty brain and spinal cord injury center, patients reported a considerable increased physical burden when training with this device over other forms of locomotor training. Appropriate research needs to be completed to confirm these subjective reports and to better understand the physiologic demands this type of training places on an injured nervous system.

Many lines of evidence also support that motivation is important when attempting to focus limited cognitive and perceptual resources to promote re-learning in an injured nervous system.29, 30 Rehabilitation professionals must ensure that a specific activity is salient to the individual who is attempting to learn or re-learn a skill. Augmented and biofeedback features included in some advanced rehabilitation technologies are designed to increase attention and participation which may result in greater motor gains by enabling emotionally significant memories to be well remembered and possibly improve the ability to reproduce a motor pattern.30 Virtual reality technologies, computer stimulated environments, is another tool gaining popularity in the rehabilitation for individuals with nervous system dysfunction including TBI. There is limited evidence to suggest that virtual reality-based training may be beneficial to individuals with acquired brain injuries (ABI), but the evidence is encouraging enough to justify further research.

With an increased demand from patients and families to focus more on recovery of function rather than compensating for lost function, recent advancements in technologies have become more widely accepted in traditional rehabilitation programs. These exciting advancements allow individuals who have sustained debilitating CNS injuries to begin “practicing” normal movement patterns even when they have very little voluntary movement. These devices can also limit the number of therapists and technicians as well as the labor intensity required to appropriately and safely mobilize patients, but they are simply tools that require clinical decision making from skilled therapists who understand motor learning and the principles of activity dependent plasticity. Although they provide promising hope for the future of rehabilitation and specifically activity-based therapy, they also come with an upfront financial burden that can be challenging to overcome. It is important as we move into the future of TBI rehabilitation, we devote ample time to study the variety of intervention choices available and determine what patient populations respond best to these therapies and at what specific phases of their recovery process rehabilitation professionals can utilize them to facilitate motor learning and exploit re-learning principles.

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Wolf SL, Lecraw DE, Barton LA, Jann BB. Forced use of hemiplegic upper extremities to reverse the effect of learned nonuse among chronic stroke and head-injured patients. Exp Neurol.

May 1989;104(2):125-132.

DeBow SB, Davies ML, Clarke HL, Colbourne F. Constraint-induced movement therapy and rehabilitation exercises lessen motor deficits and volume of brain injury after striatal hemorrhagic stroke in rats. Stroke. Apr 2003;34(4):1021-1026.

Lo AC, Guarino PD, Richards LG, et al. Robot-assisted therapy for long-term upper-limb impairment after stroke. N Engl J Med. May 13;362(19):1772-1783.

Kleim JA, Hogg TM, VandenBerg PM, Cooper NR, Bruneau R, Remple M. Cortical synaptogenesis and motor map reorganization occur during late, but not early, phase of motor skill learning. J Neurosci. Jan 21 2004;24(3):628-633.

Morrison SA, Backus D. Locomotor training: is translating evidence into practice financially feasible? J Neurol Phys Ther. Jun 2007;31(2):50-54.

Esquenazi A, Lee S, Packel AT, Braitman L. A Randomized Comparative Study of Manually Assisted Versus Robotic-Assisted Body Weight Supported Treadmill Training in Persons With a Traumatic Brain Injury. Pm R. Nov 27.

Hazell TJ, Jakobi JM, Kenno KA. The effects of whole-body vibration on upper- and lower-body EMG during static and dynamic contractions. Appl Physiol Nutr Metab. Dec 2007;32(6):1156-1163.

Hazell TJ, Kenno KA, Jakobi JM. Evaluation of muscle activity for loaded and unloaded dynamic squats during vertical whole-body vibration. J Strength Cond Res. Jul;24(7):1860-1865.

Hazell TJ, Lemon PW. Synchronous whole-body vibration increases VO(2) during and following acute exercise. Eur J Appl Physiol. Feb;112(2):413-420.

Marin PJ, Herrero AJ, John M, Hazell TJ, Garcia-Lopez D. Whole-body vibration applied during upper body exercise improves performance. J Strength Cond Res. Oct 18.

Marin PJ, Santos-Lozano A, Santin-Medeiros F, et al. Whole-body vibration increases upper and lower body muscle activity in older adults: potential use of vibration accessories. J Electromyogr Kinesiol. Jun;22(3):456-462.

Ness LL, Field-Fote EC. Effect of whole-body vibration on quadriceps spasticity in individuals with spastic hypertonia due to spinal cord injury. Restor Neurol Neurosci. 2009;27(6):621-631.

Ness LL, Field-Fote EC. Whole-body vibration improves walking function in individuals with spinal cord injury: a pilot study. Gait Posture. Nov 2009;30(4):436-440.

Daly JJ, Zimbelman J, Roenigk KL, et al. Recovery of coordinated gait: randomized controlled stroke trial of functional electrical stimulation (FES) versus no FES, with weight-supported treadmill and over-ground training. Neurorehabil Neural Repair. Sep;25(7):588-596.

Barbeau H, Ladouceur M, Mirbagheri MM, Kearney RE. The effect of locomotor training combined with functional electrical stimulation in chronic spinal cord injured subjects: walking and reflex studies. Brain Res Brain Res Rev. Oct 2002;40(1-3):274-291.

Ladouceur M, Barbeau H. Functional electrical stimulation-assisted walking for persons with incomplete spinal injuries: longitudinal changes in maximal overground walking speed. Scand J Rehabil Med. Mar 2000;32(1):28-36.

Fung J, Barbeau H. Effects of conditioning cutaneomuscular stimulation on the soleus Hreflex in normal and spastic paretic subjects during walking and standing. J Neurophysiol. Nov 1994;72(5):2090-2104.

Perez MA, Field-Fote EC, Floeter MK. Patterned sensory stimulation induces plasticity in reciprocal ia inhibition in humans. J Neurosci. Mar 15 2003;23(6):2014-2018.

Lam TE JW, D. Hsieh, J. Whittaker, M. . A Systematic review of the Efficacy of Gait Rehabilitation Strategies for Spinal Cord Injury Rehabilitation. . Topics in Spinal Cord Injury.

2007;13(1):32-57.

Moore JL, Roth EJ, Killian C, Hornby TG. Locomotor training improves daily stepping activity and gait efficiency in individuals poststroke who have reached a “plateau” in recovery.

Stroke. Jan;41(1):129-135.

Pohl M, Mehrholz J, Ritschel C, Ruckriem S. Speed-dependent treadmill training in ambulatory hemiparetic stroke patients: a randomized controlled trial. Stroke. Feb 2002;33(2):553558.

Sullivan KJ, Knowlton BJ, Dobkin BH. Step training with body weight support: effect of treadmill speed and practice paradigms on poststroke locomotor recovery. Arch Phys Med Rehabil. May 2002;83(5):683-691.

McGaugh JL. Memory reconsolidation hypothesis revived but restrained: theoretical comment on Biedenkapp and Rudy (2004). Behav Neurosci. Oct 2004;118(5):1140-1142.

McGaugh JL. The amygdala modulates the consolidation of memories of emotionally arousing experiences. Annu Rev Neurosci. 2004;27:1-28.

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Dunlop s. Activity-dependent plasticity: implications for recovery after spinal cord injury.

Trends in Neurosciences. 2008;31(8):410-418.

Kleim JA. Neural plasticity and neurorehabilitation: teaching the new brain old tricks. J Commun Disord. Sep-Oct;44(5):521-528.

Kleim JA, Jones TA. Principles of experience-dependent neural plasticity: implications for rehabilitation after brain damage. J Speech Lang Hear Res. Feb 2008;51(1):S225-239.

Reale RA, Brugge JF, Chan JC. Maps of auditory cortex in cats reared after unilateral cochlear ablation in the neonatal period. Brain Res. Aug 1987;431(2):281-290.

Pascual R, Hervias MC, Toha ME, Valero A, Figueroa HR. Purkinje cell impairment induced by early movement restriction. Biol Neonate. 1998;73(1):47-51.

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Candy Tefertiller, PT, DPT, ATP, NCS is the Director of Physical Therapy at Craig Hospital. Candy received a B.S in Biology from Mount Olive College in 1997 and a Master’s in Physical Therapy from East Carolina University in 2000. She then completed a Doctorate of Physical Therapy degree from Rocky Mountain Health Care University in 2008. Candy has been working in the field of neurological rehabilitation since 2000 and received an assistive technology practitioner (ATP) certification in 2005 and became a certified neurological clinical specialist (NCS) in 2007. She has been involved in numerous research projects and has focused much of her career on interventions and program development promoting recovery after neurologic injury or disease. Candy is a member of the American Physical Therapy Association and the Neurologic Section.

2015 Brain Injury Summit A Meeting of the Minds January 11-14, 2015 - Vail, Colorado Call for Abstracts opening February 2014 - see website for details

A state-of-the-art, interdisciplinary, and inspirational conference for professionals in the field of brain injury rehabilitation www.braininjurysummit2015.org Hosted by

BRAIN INJURY PROFESSIONAL

15

Tell, Don’t Ask: Communicating with Patients with Acquired Learning and Memory Impairments

Lyn S. Turkstra, PhD and Lindsey Valitchka, M.S.

Learning and memory problems in are common in patients with acquired brain injury (ABI). These impairments affect all of the patient’s daily interactions, and present a significant challenge to inpatient rehabilitation. In this article, we consider common learning profiles in patients with ABI, and how patients’ memory strengths and limitations affect not only what they learn on inpatient rehabilitation but also what we learn from them.

The type of learning that is commonly impaired after ABI is declarative learning. Declarative learning, also referred to as explicit learning, is conscious learning of information related to events (episodic memory) and concepts (semantic memory).

The extent to which information is learned declaratively depends on factors such as the importance of the information to the learner, how richly it is encoded, and the meaningful connections between new information and what the learner already knows. Declarative learning ability improves throughout childhood and declines slightly in the later decades of life. Declarative learning impairments are often referred to colloquially as “short-term memory problems”, because the patient tends to forget what just happened while “longer-term” (distant) memories are relatively intact. This type of learning is highly dependent on mesial temporal lobe structures, particularly the hippocampus and parahippocampal gyrus. These structures are exquisitely sensitive to loss of oxygen; thus, impairments in declarative learning are seen after any ABI etiology that involves loss of oxygen (hypoxia) or blood flow (ischemia) to the brain (Myers et al., 2008; Mecklinger et al., 1998).

Declarative learning can be contrasted with implicit learning, which is unconscious learning of habits and skills and occurs primarily through repetition of reinforced behaviors (procedural learning). Emotional associations also are learned implicitly, so we often have feelings about people and events that are distinct from our declarative knowledge. The neuroanatomical basis of implicit learning has not been conclusively determined, but research points to a role for the basal ganglia, cerebellum, and other subcortical structures. Implicit learning is adult-like almost from birth, is maintained throughout life 16 BRAIN INJURY PROFESSIONAL

even in the context of profound degeneration of declarative learning (e.g., in late-stage dementia), and seems impervious to almost any type of brain damage.

The typical patient with ABI has impaired declarative learning and preserved implicit learning. The difference between these two memory types is most salient in patients who are in post-traumatic amnesia (PTA). PTA is defined as the time between loss of consciousness and return of continuous memory for day-to-day events (McMillan et al., 1996), and is a syndrome of disorientation to time, place and person; confusion; diminished memory; and reduced capability for attending and responding to environmental cues (Nabors et al., 2002). In terms of learning, PTA may be best described as a stage post-injury during which declarative learning is impaired and implicit learning is intact, evidenced by intact learning of automatic motor behaviors in the context of profound impairments in learning new facts (Ewert et al., 1989).

Even after PTA has resolved, it is common for patients with ABI to have persistent deficits in declarative memory, while implicit memory is preserved (Schacter, 1992). When patients have impaired declarative learning and intact implicit learning, they will learn thought and action patterns that they repeat most often, even if they have no conscious memory of learning (Cohen et al., 1985). Intact implicit memory also means the patient can learn emotional associations. For example, the patient might “have a good feeling” about a staff person or place, without any recollection of the event attached to that feeling.

During a typical rehabilitation day, a patient learns new skills and information using both implicit and declarative memory systems, to the extent that he or she is able. It is possible, however, that rehabilitation staff might not formally consider the two types of learning when planning intervention for an individual patient. Further, therapists might not be aware of learning that occurs outside of therapy, much of which may be implicit. Medicare regulations dictate that patients must be in direct therapy for at least 15 hours each week. Assuming that the patient is awake for 12 hours each day, that leaves 69 hours each week in which the patient may

be awake and not in direct therapy. Thus, there are many opportunities for learning outside of therapy sessions. The question is: what are patients learning?

To illustrate the potential for learning in- and outside of therapy, we present data from a patient, Marcel (a pseudonym), who was observed during one full therapy day at a rehabilitation hospital. Marcel was observed from the beginning of his first therapy session at 8:00 a.m. to the end of his final session at 3 p.m. Observation focused on communication behaviors specifically, as data were collected in part as a quality improvement project for the hospital speech-language pathology department. For HIPAA reasons, Marcel’s age and diagnosis were not recorded. His score on the Repeatable Battery for Assessment of Neuropsychological Status was 64, indicating significant cognitive impairments overall, and staff reported that he had declarative memory impairments. Data collected included the total number of declarative questions asked of Marcel, his answers to those questions, and staff responses to Marcel’s answers; the subset of declarative questions for which answers could be verified (e.g., the answer was known to staff or the observer or could be verified with a caregiver, such as information about pre-injury behaviors, vs. questions about the patient’s feelings and opinions, or information that only the patient would know); and, of that subset, the number of Marcel’s answers that were correct.

Throughout the day, 18 different individuals entered Marcel’s room. During that time, he was asked 51 declarative questions, and 17 (33%) of his answers could be verified as correct or incorrect. Of these 17 questions, Marcel answered 6 incorrectly (35%). Marcel also said, “I don’t know” 10 times during the observation and “I don’t remember” 5 times.

For the 34 questions for which answers could not be verified, in each case Marcel’s answer was accepted without question.

The problem with accepting unverifiable answers was illustrated by two of Marcel’s interactions: one with a Therapeutic Recreation specialist, who was completing an application to qualify Marcel for transportation services; and one with a Diabetes Educator, who was preparing Marcel for a new home-based insulin program for his diabetes. In both cases, Marcel was alone in the room except for the observer. The Therapeutic Recreation specialist asked several questions about Marcel’s home environment and location, as well as questions about his current level of cognitive functioning (e.g. “Do you have trouble finding bus routes?”). The Diabetes Educator asked questions such as, “Think back, do you remember if you used to take [name of prescription pill]?” The session with the Educator included practice of mock insulin injections into a pillow with a type of syringe that Marcel denied having seen before. Marcel was not successful on his first attempt at an injection, so the Educator demonstrated the task once more and Marcel was successful on his second attempt. There were no further practice trials, so it is not known if Marcel learned the task.

It appeared that the two staff members were either unaware of Marcel’s memory problems, although they were documented in his medical chart, or did not appreciate the implications of memory impairments for communicating with the patient. It also was striking that the response Marcel repeated most often – i.e., the one he was most likely to learn via repetition – was “I don’t know.” Similar patterns were observed in four other patients observed for one full day each, with the percent of ques-

tions that had verifiable answers ranging from 33% to 72% and the percent of correct answers to those questions ranging from 8% to 71%. All patient answers were accepted at face value. In other words, patients’ answers to a substantial portion of questions asked by rehabilitation staff were either definitely or possibly incorrect, yet were accepted as correct and in some cases were the basis for healthcare decisions.

The observations just described suggest a need for methods to increase staff awareness of a patient’s declarative vs. implicit memory skills in a simple, concrete way that can support effective communication. An example is the Memory Screening Profile recently developed by the rehabilitation team at the Illinois Neurological Institute. This one-page form states whether the patient has impairments in explicit vs. implicit memory and lists simple strategies that staff should use when communicating with that patient, such as “Tell, don’t ask” (provide information and minimize questions), “use familiar routines”, or “provide visual cues to enhance learning”. It can be extremely challenging to talk to a person who has impaired declarative learning, so staff training also is required to teach new communication habits.

It is important to keep in mind that patients with “shortterm memory problems” are still learning. Our challenge in rehabilitation is to figure out how best to communicate with these patients, so that information exchange is reliable and patients practice most what we want them to learn.

References

1. Cohen N. Eichenbaum H. Deacedo B, et al., Different memory systems underlying acquisition of procedural and declarative knowledge. Ann N Y Acad Sci. 444: 54-71, 1985.

2. Department of Health and Human Services, Centers for Medicare & Medicaid Services.

(2012). Inpatient rehabilitation therapy services: Complying with documentation requirements (ICN 905643). Retrieved March 1, 2013 from: http://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/downloads/Inpatient_Rehab_Fact_ Sheet_ICN905643.pdf 3. Ewert J. Levin H. Watson M, et al., Procedural memory during posttraumatic amnesia in survivors of severe closed head injury. Archives of Neurology. 46: 911-916, 1989.

4. McMillan T. Jongen E. & Greenwood R, Assessment of post-traumatic amnesia after severe closed head injury: retrospective or prospective? L of Neurology, Neurosurgery, and Psychiatry.

60: 422, 1996.

5. Mecklinger A. von Cramon D. & Matthes-von Cramon G, Event-related potential evidence for a specific recognition memory deficit in adult survivors of cerebral hypoxia. Brain. 21(10): 1919-35, 1998.

6. Myers C. Hopkins R. Deluca J. et al., Learning and generalization deficits in patients with memory impairments due to anterior communicating artery aneurysm rupture or hypoxic brain injury. Neuropsychology. 22(5): 681-686, 2008.

7. Nabors N. Seacat J. Rosenthal M, Predictors of caregiver burden following traumatic brain injury. Brain Injury. 16(12): 1039-1050, 2002.

8. Schacter D, Implicit knowledge: new perspectives on unconscious processes. Proc. Nati. Acad.

Sci. USA. 89: 11113-7, 1992.

about the author

Lyn Turkstra, PhD, is a Professor at the University of Wisconsin-Madison, and a member of the Neuroscience Training Program. The broad goal of research in Dr. Turkstra’s laboratory is to understand the effects of cognitive impairments on communication ability in adolescents and adults with acquired neurologic disorders, to design interventions that will lead to improved participation in social life. Dr. Turkstra also is involved in the development of national and international evidence-based practice guidelines in cognitive rehabilitation for individuals with traumatic brain injury.

Lindsey Valitchka is a recent graduate of the Masters Program in SpeechLanguage Pathology at the University of Wisconsin-Madison. She is currently completing her Clinical Fellowship year. Lindsey is a founding member of Seattle, Washington’s the Satori Group, a regionally recognized and critically acclaimed theatre ensemble, working primarily in the generation and development of new work.

BRAIN INJURY PROFESSIONAL

17

Rehabilitation and Context are Interrelated Harvey E. Jacobs, PhD, CLCP

Webster’s dictionary defines rehabilitation as to restore to a former capacity. Successful rehabilitation requires utility of that capacity. Thus, relative increased range of motion in a leg is best described by what it provides; reducing painful contractures, allowing easier transfers, or returning to one’s job as an officer walking the beat. These qualifications involve context, the interrelated conditions in which something exists or occurs.

Details are important, but so is the larger picture; understanding the ecological validity of what, where and why. Rehabilitation is a collaborative process that requires knowing both the trees and the forest.

People do better when there is relevancy in their efforts.

Learning basic math is much harder than applying the same principles to help you save for something you want. Buying a simulated stick of butter in a simulated therapy store is a first step, but does not assure success at the Handy Dandy Market that has 150 different versions, until you try it.

Working in people’s natural daily environments amplifies contextual significance. There is a heritage of implicit cues and supports (some more beneficial than others) that “return” to guide behavior. “Undiscovered” preserved skills resurface as a person returns to opportunities and situations that were not evident in more structured clinical settings. Clinically diagnosed impairments may be less evident in the cadence of daily life where there are alternative pathways to success; i.e., someone with auditory processing problems may still succeed because of redundant visual and non-verbal cues. Conversely, a minimally noted impairment may “blossom” when exposed to the cadence of daily life. You won’t know until you take it on the road!

Context becomes more important as we move from our commonalities to our individuality.

Some aspects of individuality involve personal heritage, personality and pre-morbid lifestyle. Other aspects correspond to injury related changes in physical, sensory, cognitive, emotional and other capacities that make once familiar circumstances less familiar. The interaction of these domains often offers the greatest challenges and opportunities. For example, failure to teach someone to organize their life with a color-coded organizer may be related to (therapist unknown) colorblindness rather than recently diagnosed inattention. Successful assertiveness training must be attuned to location and culture; it is different in Brooklyn than it is in Boise! Finally, your own per18 BRAIN INJURY PROFESSIONAL

ceptions and contextual biases will color the picture, no matter how hard you try.

Assuring Context in Your Work

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Rehabilitation is a team effort and the client needs to be a team executive. Relegating person-first service delivery to “political correctness” obscures fundamental values and powerful resources. The adjustments a team has to make to “really” involve a client is often prescient of the adaptations required to help that person succeed in daily life.

The client is always right. If he or she doesn’t “get it” then it isn’t working, regardless of intent or prior success. A cue, support or intervention that is obvious to everybody but the client does not exist.

Concurrently embrace the micro and the macro. It is critical to understand the nuances and details of a person’s presentation, as well as the importance and relevance of these capacities in that person’s real world.

Diagnose capacity as well as incapacity. Knowing what doesn’t work is important, but it’s more important to know what still works and how. We all survive by what we can do.

Work in a person’s environment when possible. When this is not possible, bring as much of that environment into your setting, through the eyes of a client and his or her people. Your expertise is most valued when people can internalize it into their lives.

References

Jacobs, H.E. Understanding Everybody’s Behavior After Head Injury: Don’t “Don’t!”®. Wake Forest, North Carolina: Lash and Associates Publishing/Training, Inc. (2010). Also available through author.

about the author

Dr. Jacobs, PhD, is a licensed clinical psychologist and a certified life care planner. Now in private practice, he has served on medical school faculties, worked on-staff, in administrative roles and as a consultant to numerous programs and facilities. His current interests include life care planning; rehabilitation for neurological, psychiatric, medical and intellectual impairments; complex cases; behavior analysis; and program development.

Jacobs has published and lectured widely and is the recipient of numerous public and private grants. He can be reached at www.harveyjacobs.net.

BRAIN INJURY PROFESSIONAL

19

Disorders of Consciousness: Basic Concepts to Guide Effective Clinical Practice

Carrie Charney, MS, CCC-SLP and Joseph T. Giacino, PhD

Many survivors of severe traumatic brain injury (TBI) experience prolonged disorders of consciousness (DoC), including coma, vegetative state, minimally conscious state (MCS) and post-traumatic confusional state (PTCS). Coma is a state of complete self and environmental unawareness during which the eyes remain continuously closed even when vigorous stimulation is applied (Plum & Posner, 1982). The vegetative state (VS) is characterized by the complete absence of behavioral signs of self and environmental awareness and is distinguished from coma by the reemergence of spontaneous or elicited eye-opening (Multi-Society Task Force on PVS, 1994. The minimally conscious state (MCS) is characterized by inconsistent but clearly recognizable behavioral signs of consciousness (Giacino, Ashwal, Childs, et al., 2002). The diagnosis of MCS requires reproducible evidence of command-following, discernible yes/no responses, intelligible verbalization or movements and affective behaviors provoked by relevant environmental stimuli that cannot be accounted for by reflexive activity (e.g., object manipulation, visual tracking, directed reaching, contingent smiling/crying). Emergence from MCS is established when there is clear evidence of reliable communication through verbal or gestural yes-no responses, or recovery of functional object use (Giacino, Ashwal, Childs, et al., 2002). Following emergence from MCS, most patients experience a post-traumatic confusional state (PTCS) (Sherer, Nakase-Richardson, Yablon, et al., 2005). PTCS is marked by temporal and spatial disorientation, distractibility, anterograde amnesia, impaired judgment, perceptual disturbance, restlessness, sleep disorder and emotional lability.

In view of the subtle but important differences between these conditions, and the degree of fluctuation that is commonly observed in DoC, it is important to utilize a multi-disciplinary, systematic approach with regard to assessment and treatment.

Diagnostic accuracy is critical to assure appropriate clinical management, establish an accurate prognosis and provide appropriate information to caregivers. Misdiagnosis may limit accessibility to medical and rehabilitation services and inappropriately influence end-of-life decision-making, sometimes resulting in premature withdrawal of life-sustaining care (Schnakers, Vanhuydenhause, Giacino, et al., 2008) . To mitigate these concerns, it is useful to conduct serial assessments (at least weekly during the first 8-12 weeks post-injury) across multiple disciplines. It is equally important to select an appropriate assessment instrument to ensure valid and reliable results. The Coma Recovery Scale-Revised (CRS-R) 20 BRAIN INJURY PROFESSIONAL

has been demonstrated to have strong psychometric characteristcs and has been recommended for use in clinical practice and research (Giacino, Kalmar, Whyte, et al., 2004). The CRS-R was designed for use in differential diagnosis, prognosis and treatment planning. The six CRS-R subscales assesses auditory, visual, motor, oromotor/verbal, communication, and arousal. The CRS-R allows the clinician to capture subtle but important changes in the patients’ behavior that may indicate improvement.

In addition to tracking global changes in neurobehavioral status, it is important to systematically monitor improvement within specific domains of function. For example, we have developed a Limb Movement Protocol that assesses the patient’s capacity to engage in functional movement sequences that involve use of common objects and social gestures. The Disability Rating Scale (DRS) is another effective tool that can be utilized to assess global changes in functional status over time even as the patient moves into PTCS and eventually into the community when appropriate (Rappaport, Hall, Hopkins, et al., 1982). The DRS provides information regarding eye opening, best motor response, communication ability, cognitive ability for feeding, toileting and grooming, level of functioning and employability. As the patient moves into PTCS, it is recommended that a new set of assessments be administered to capture changes as their cognition and functional communication improve. The Confusion Assessment Protocol (CAP) was developed specifically for this purpose. The CAP is a compilation of items derived from existing standardized tools used to assess delirium, post-traumatic amnesia, and agitation (Sherer et al. 2005). The CAP includes test completion codes that are used to identify problems that confound or invalidate performance (e.g. poor arousal, motor impairment, visual disturbance, aphonia, aphasia, etc.).

A key objective in the treatment of patients in MCS is to restore communication ability. To determine readiness for use of an augmentative communication system, it is important to consider three pre-requisites. First, it is necessary to identify at least two behaviors that are under volitional control (e.g. look up, look down; raise one finger, raise 2 fingers). The second step is to determine the consistency of the behaviors selected to ensure that the rate of occurrence is sufficient for repeated use. The third and final step is to determine whether the selected behaviors can be converted into a yes-no signal system. This final step is the most challenging as it requires increased cognitive demands (e.g., working mem-

ory, decision-making). Many patients “pass” the first two phases but are unable to generate reliable yes-no responses. Systematic response monitoring throughout these three steps allows the clinician to track the consistency, accuracy and reliability of selected target behaviors.

Another strategy that is useful for investigating patient-specific clinical questions is referred to as Individualized Quantitative Behavioral Assessments (IQBA) (DiPasquale and Whyte, 1996). The purpose of IQBA is to help differentiate volitional behaviors from those that are random, involuntary or reflexive. The process begins by operationally-defining a single target behavior and a triggering stimulus. The clinician then monitors the frequency of occurrence of the target behavior under three conditions: 1) Congruent- a command is given that is expected to elicit the desired behavior, 2) Incongruent- a different command is given that is not expected to elicit the desired behavior and 3) Neutral- no command is given and the target behavior is not expected to occur. In effect, condition 1 serves as a test of volitional movement, condition 2 as “noise” and condition 3 as rest. The procedure is illustrated in the example below: Target behavior: Toe movement- toe movement occurs when at least one toe of either foot strikes a “ring” encircling the toe within 10 seconds of the command being given to “Wiggle your toes.”.

C1 (Congruent command): “Wiggle your toes. Do it now. Go ahead, wiggle your toes.”

C2 (Incongruent command): “Show me a thumbs up. Do it now. Go ahead, show me a thumbs-up.”

C3 (No command): Examiner should remain quiet and monitor toe movement.

Using the operational definition of toe movement, the clinician records whether or not toe movement occurred within the permissible response window (i.e., 10 seconds). Data can then be compared and interpreted as follows: C1 = C2 = C3: No indication of language comprehension. Toe movement is probably random.

C1 and C2 significantly > C3: No indication of language comprehension. Toe movement is probably being triggered by verbal stimulation.

C1 > C2 and C3: Toe movement is non-random and appears to be under volitional control.

IQBA protocols provide a data-driven, evidence-based approach to clinical practice and are often used to complement standardized neurobehavioral assessment (e.g., CRS-R). Protocols can be designed to investigate a wide spectrum of assessment and treatment questions.

Caregiver support and education should be interleaved with all aspects of the patient’s rehabilitation course. In many ways, the success of the educational efforts is dependent upon the level of support available to the family. The traumatic event responsible for the patient’s brain injury reverberates through the family and is expressed idiosyncratically, based on the family’s prior history. Ready access to psychologists, psychiatrists and social workers provides an avenue to help flesh out and mitigate factors that may interfere with family adjustment and, in turn, patient progress. It is important to lay the groundwork early for the family to understand the nature and timing of rehabilitation process, including procedures and policies. Opening a fluent communication channel guards against the development of unrealistic expectations about the reha-

bilitation program and the prospects for further recovery.

Recent findings from long-term outcome studies of patients with prolonged DoC provide compelling evidence that the recovery course is longer and outcomes substantially better in many cases than previously thought (Nakase-Richardson et al., 2012, Estraneo et al., 2010, Katz et al., 2009). As clinicians, our aim is to accelerate and facilitate the natural recovery process. A multidisciplinary, systematic approach to assessment and treatment is likely to increase the probability of attaining these goals.

References 1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

Plum F., Posner JP. The diagnosis of stupor and coma, 3rd Edition. 1982: F.A. Davis.

The Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state (1). N Engl J Med, 1994. 330(21): p. 1499-508.

Giacino, J.T., S. Ashwal, N. Childs, R. Cranford, B. Jennett, D.I. Katz, J.P. Kelly, J.H. osenberg, J. Whyte, R.D. Zafonte, and N.D. Zasler, The minimally conscious state: definition and diagnostic criteria. Neurology, 2002. 58(3): p. 349-53.

Sherer M, Nakase-Thompson R, Yablon SA, Gontkovsky ST. Multidimensional assessment of acute confusion after traumatic brain injury. Archives of physical medicine and rehabilitation 2005;86:896-904.

Schnakers C, Vanhaudenhuyse A, Giacino J, et al. Diagnostic accuracy of the vegetative and minimally conscious state: clinical consensus versus standardized neurobehavioral assessment.

BMC Neurol 2009;9:35.

Giacino JT, Kalmar K, Whyte J. The JFK Coma Recovery Scale-Revised: measurement characteristics and diagnostic utility. Archives of physical medicine and rehabilitation 2004;85:2020-9.

Rappaport, M., K.M. Hall, K. Hopkins, T. Belleza, and D.N. Cope, Disability rating scale for severe head trauma: coma to community. Arch Phys Med Rehabil, 1982. 63(3): p. 118-23.

DiPasquale MC, W., J, The use of quantitative data in treatment planning for minimally conscious patients. J Head Trauma Rehabil, 1996. 11(6): p. 9.

Nakase-Richardson, R., Whyte, J., Giacino, J. T., Pavawalla, S., Barnett, S. D., Yablon, S. A., Sherer, M., Kalmar, K., Hammond, F. M.,Greenwald, B., Horn, L. J., Seel, R., McCarthy, M., Tran, J. & Walker, W. C. 2012. Longitudinal outcome of patients with disordered consciousness in the NIDRR TBI Model Systems Programs. J Neurotrauma, 29, 59-65.

Estraneo, A., Moretta, P., Loreto, V., Lanzillo, B., Santoro, L. &Trojano, L. 2010. Late recovery after traumatic, anoxic, or hemorrhagic long-lasting vegetative state. Neurology, 75, 239-45.

Katz, D. I., Polyak, M., Coughlan, D., Nichols, M. & Roche, A. 2009. Natural history of recovery from brain injury after prolonged disorders of consciousness: outcome of patients admitted to inpatient rehabilitation with 1-4 year follow-up. Prog Brain Res, 177, 73-88.

About the Authors

Carrie Charney, MS, CCC-SLP, CBIS is the Speech-Language Pathology Practice Leader on the Brain Injury Program and Advanced Clinician at Spaulding Rehabilitation Hospital. Carrie is a graduate of Ithaca College and Northeastern University, first practicing in acute care and then transitioning to her current work in the acute rehabilitation setting. She has clinical expertise in both cognitive-communication and swallowing disorders. In addition to her clinical care, Carrie supervises Speech-Language Pathologists on the Brain Injury Program at Spaulding. In this role, Carrie provides clinical education and training of advanced skill sets in the areas of Disorders of Consciousness and the general Brain Injury Program.

Joseph T. Giacino, PhD is the Director of Rehabilitation Neuropsychology and Research Associate in the Department of Physical Medicine and Rehabilitation at Spaulding Rehabilitation Hospital in Boston, Massachusetts, consulting neuropsychologist in the Department of Psychiatry at Massachusetts General Hospital, Associate Professor in the Department of Physical Medicine and Rehabilitation at Harvard Medical School and Adjunct Professor at the MGH Institute of Health Professions. Dr. Giacino’s clinical and research activities are centered on the development and application of novel assessment and treatment methods for individuals with severe acquired brain injury (ABI) and disorders of consciousness (DOC). He served as cochair of the Aspen Workgroup (responsible for developing the diagnostic criteria for the minimally conscious state [MCS]) and currently chairs the Vegetative and Minimally Conscious State Guideline Development Panel, co-sponsored by the American Academy of Neurology, American Congress of Rehabilitation Medicine and National Institute on Disability and Rehabilitation Research, which is charged with revising existing clinical guidelines for management of patients with DOC. He is currently Project Director of the Spaulding-Harvard TBI Model System funded by the National Institute on Disability and Rehabilitation Research (NIDRR) and co-directed a 12site clinical trial which demonstrated that amantadine hydrochloride (AH) accelerates recovery in patients with prolonged disturbance in consciousness.

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Awaiting a Golden Age of Neurorehabilitation for Patients with Disorders of Consciousness

Joseph J. Fins, MD, MACP

Brain injury professionals often talk of the golden hour that period of time when brains have the greatest potential for recovery if treatment is promptly provided. After that first hour the amount of salvageable cognitive function degrades, so emergent efforts have been geared to prompt expeditious treatments whether it be efforts to decompress the herniating brain or cooling an anoxic one. This much is well understood in the acute stages of injury: brilliant acute care is decreasing mortality and creating the conditions for additional recovery within rehabilitation and chronic care.

One would think that all those golden hours in acute care would spawn a golden age for the chronic phases of recovery.

It would be a logical supposition given the advent of new enhanced diagnostic techniques including objective behavioral measurement tools like the Coma Recovery Scale-Revised and advanced neuroimaging methods like fMRI which can assess retained consciousness in severe injury and others like diffusion tension MRI which can provide important structural information about injury and possible evidence of recovery like axonal sprouting.

On the therapeutic side, one would also be justified in expecting a golden age of neurorehabilitation. Twenty five years ago the therapeutic advances that have occurred in the past ten years would have been unthinkable, almost heretical when disorders of consciousness were thought fixed and immutable and resistant to any therapeutic advance. But the past decade has been one of tremendous promise. Although the study of deep brain stimulation (DBS) in MCS, remains investigational, our group did demonstrate proof of principle that neuromodulation could promote late recovery in MCS (Schiff et al 2007).

On the pharmacological side, there is promising work as well, most notably the recent randomized clinical trial showing the ability of Amantadine to accelerate the pace of recovery in disorders of consciousness. Even neuroimaging, used primarily for diagnostic purposes, has in research settings been able to serve as a neuroprosthetic for the establishment of functional 22 BRAIN INJURY PROFESSIONAL

communication in patients with impaired motor output but retained consciousness.

Given these dramatic diagnostic and therapeutic advances, one would think that we would be on the cusp of a new era in the care of the severely brain injury. But there is more to suggest a golden age … If we move from the scientific advances to the broader societal context where this science is being done, one sees social forces which should be catalytic for our field.

Brain injury has been in the headlines because of the tragedy of the wars in Iraq and Afghanistan with traumatic brain injury (TBI) being described as the “signature injury” of these wars because of the trauma from roadside improvised explosive devices. (IEDs) Heart-wrenching memoirs like Lee and Bob Woodruff ’s “In an Instant” were best sellers and former US Army Vice Chief of Staff Peter Chiarelli (General, US Army, retired) and former US Representative Patrick Kennedy and others have started the One Mind Foundation to address the neuro-psychological needs of returning Veterans and the civilian sector as well.

These considerable social forces have been amplified by the tragedy of Tuscon and the shooting of Representative Gabby Giffords. Her heroic recovery and appearances before a joint session of Congress have resulted in a national outpouring of sympathy for her and her family.

Given all of these factors one would think that we were primed for a golden age of brain injury research and care. That at least would be what could logically be presumed based on the incredible scientific recovery that we have witnessed. But that presumption would sadly be wrong.

Unfortunately, this is a conclusion I have come to as I complete a new book Rights Come to Mind: Brain, Injury and the Struggle for Consciousness to be published by Cambridge University Press in late 2013 (Fins, 2013 expected). I conducted structured and open-ended interviews with over forty families who came to Weill Cornell Medical College and the Rockefeller University for research studies to assess functional status

and understand mechanisms of recovery. After speaking with families and collecting thousands of pages of transcripts, I am struck by the profound discordance between the scientific potential that exists and the social context which could catalyze improved care but has not. There still is a dire state of affairs.

In a stereotypic fashion, irrespective of race, class and state of origins, families tell of a still disinterested health care system.

Patients who do not quickly recover are presumed to have little or no potential for incremental recovery. Those with an indeterminate prognosis, who fail to demonstrate improvement are often subject to premature decisions to withhold or withdraw life-sustaining therapies and palliative care. Some families have been approached for consent to turning their loved one into organ donors when their prognosis was still unclear. (Fins, 2013 expected) Patients continue to suffer from a lingering nihilism, which is product of the interwoven history of the evolution of the right to die and the vegetative state, starting in Quinlan and continuing on to Cruzan and Schiavo. Over the decades since Quinlan that relationship has been generalized to other patients with severe brain injury, such as those who are in MCS, who may have a more favorable prognosis. (Fins, 2003) Despite recent encouraging evidence from Nakasone-Richardson about the prospect for recovery in MCS, patients with severe brain injury and loss of consciousness, are still perceived nihilistically, as if they were invariably terminal.

Those patients who survive to discharge are often sent to chronic care facilities while still medically unstable to places that cannot handle coexisting frequent neuromedical complications like autonomic storms and hyperthermia. Families find these discharges, ironic and disappointing, that after so much expended effort during acute care hospitalization their loved ones would end up in places so ill-equipped and degrading.

They find the state of chronic care dehumanizing and these settings are described in terms of neglect and near abuse, as conscious patients -- misdiagnosed as VS-- are treated as if they are not there. Many languish there ignored and sequestered.

And instead of improved access to care and the proliferation of programs which bring advances to the patient’s bedside, most families still struggle to get a competent diagnosis. The conflation of brain states continue and the diagnostic error rate, as identified by Schnakers et al. demonstrating that 41% of nursing home patients diagnosed as vegetative were in fact minimally conscious.

That figure has been bandied about in rehab circles to the point that it has almost been accepted as a given. But if we pause and look at anew, it is a shocking diagnostic error rate that would not & could not be acceptable, in any other realm of medicine. Can any reader of this journal image a comparable error rate amongst the sub-sets of leukemia? Of course not. So as we expect a golden age of neurorehabilitation, such a disparity would point us towards disappointment.

And the trend line, instead of getting better, has the potential to become far worse because of the possible policy effects of health care reform. As is likely known to readers of this journal, rehabilitation was almost not included as one of the core principles of the Affordable Care Act (ACA). It was not inserted until people like Pia Carusone, former chief of staff to Rep. Gabby Giffords, the Congressional Brain Injury Caucus

and the leadership of the Brain Injury Association of America, among other groups, successfully lobbied the Obama Administration successfully for its inclusion.

Although we are grateful for rehabilitation’s addition to the ACA, it is worth pausing to reflect more deeply on its exclusion from the law. It is simply an amazing exclusion. It was a remarkable oversight in light of 300,000 veterans returning with brain injury and the brain injury sustained by Congresswoman Giffords and its inclusion should not leave us sanguine because detailed regulations can affect the quality of access that will exist. It remains a time of vigilance because matters could get worse.

Although ACA laudably expands access, broadens age of coverage and adds appeals mechanisms for coverage decisions, it falls preys to an over-arching strategy which stresses efficiency metrics and rate of recovery which has the potential to have an adverse effect on the care of patients with disorders of consciousness. (Fins, 2012) Under the ACA, care should be efficient to minimize waste and decrease variance, all worthy outcomes. But in brain injury, and in disorders of consciousness specifically, how does one know what constitutes efficient care, when the “normal” pace of recovery is not known? Brains will not recover based on reimbursement criteria but by biological mechanisms that we still do not understand. (Fins, 2012) To impose reimbursement expectations on a biological model will not work and is contrary to the needs of this population.

We need to do better and advocate more effectively for these patients (and their families) lest they continue to be under-served because of lingering bias and present-day fiscal challenge. In closing I would suggest that we not argue for better care as a benefit or as an entitlement. In this environment we will lose.

Instead, I would suggest that we start to view consciousness as a civil right that can neither be easily abridged nor ignored.

(Fins, 2010 and Fins, 2013 expected) In this way rights will come to mind and these patients will be the beneficiaries of what should be a golden age for neuroscience and neurorehabilitation.

References Fins JJ. Constructing an Ethical Stereotaxy for Severe Brain Injury: Balancing Risks, Benefits and Access. Nature Reviews Neuroscience 4: 323-327, 2003.

Fins JJ. Minds Apart: Severe Brain Injury. In, Law and Neuroscience, Current Legal Issues, M. Freeman, (ed). Oxford University Press, Oxford U.K. Pages 367-384, 2010.

Fins JJ. “Wait, Wait — Don’t Tell Me”…Tuning in the Injured Brain. Archives of Neurology 69(2): 158-160, 2012.

Fins JJ: Rights Come to Mind: Brain Injury, Ethics & The Struggle for Consciousness. New York: Cambridge University Press, expected 2013.

Schiff ND, Giacino JT, Kalmar K, Victor JD, Baker K, Gerber M, Fritz B, Eisenberg B, O’Connor J, Kobylarz EJ, Farris S, Machado A, McCagg C, Plum F, Fins JJ, Rezai AR. Behavioral Improvements with Thalamic Stimulation after Severe Traumatic Brain Injury. Nature 448(7153): 600-603, 2007.

about the author

Joseph J. Fins, MD, MACP, is The E. William Davis, Jr. MD Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College. He is the author of Rights Come to Mind: Brain Injury, Ethics & The Struggle for Consciousness forthcoming from Cambridge University Press. Dr. Fins is an elected Member of the Institute of Medicine of the National Academy of Sciences and Fellow of the American Academy of Arts and Sciences.

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Traumatic Brain Injury Common Data Elements Project Cynthia Harrison-Felix, PhD and Geoffrey Manley, MD, PhD

An interactive breakfast session was held at the 2012 Brain Injury Summit in Beaver Creek Colorado that focused on the use of the Traumatic Brain Injury Common Data Elements (TBI CDEs) in TBI research. A history of the development, testing and current status of the TBI CDEs was discussed, and is summarized here.

A recognized limitation to the advancement of TBI clinical research is the lack of standardized study variables and outcome assessments (including definitions and coding nomenclature) across studies, in order to be able to compare their findings and apply them to clinical practice.(Thurmond et al., 2010) In 2008, Federal agencies involved in TBI research, the National Institute of Neurological Disorders and Stroke, Department of Veterans Affairs, National Institute on Disability and Rehabilitation Research, Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, and Defense and Veterans Brain Injury Center cosponsored the Interagency TBI CDE Project. The goal of 24 BRAIN INJURY PROFESSIONAL

this project was to promote international data sharing and collaboration through the standardization of definitions and protocols for TBI research.

Workgroups of experts in the field of TBI clinical research were formed to make recommendations for the TBI CDEs. Four Workgroups were formed around broad data element content areas: Demographics and Clinical Assessments, Radiologic Imaging, Biospecimens and Biomarkers, and Outcome Measures (Figure 1).(Whyte et al., 2010) These Workgroups held regular discussions to reach consensus recommendations based on evidence and expert opinion.

Recommendations for the first version of the TBI CDEs were published in the Archives of Physical Medicine and Rehabilitation in 2010.(Duhaime et al., 2010; Maas et al., 2010; Manley et al., 2010; Wilde et al., 2010) This was considered to be a major advancement toward standardization of TBI clinical research.

In 2009, recognizing the lack of specificity of the CDEs

for pediatric TBI research, Workgroups were formed to review the TBI CDEs and make recommendations for modifications and additions to the TBI CDEs. These recommendations relevant to pediatric TBI clinical research were published in the Journal of Neurotrauma in 2012.(Adelson et al., 2012; Berger et al., 2012; Duhaime et al., 2012; Gerring and Wade, 2012; Hunter et al., 2012; Miller et al., 2012; McCauley et al., 2012) In 2009, the National Institute of Neurological Disorders and Stroke funded a multi-site pilot study – Transforming Research and Clinical Knowledge in Traumatic Brain Injury (TRACK-TBI Pilot). The aim of this initiative was to test and refine the CDEs, neuroimaging standards, and best practices for genetics and proteomics in TBI studies. Testing and validating of the TBI CDEs was performed in a multicenter prospective observational study with three acute TBI centers and one rehabilitation center: San Francisco General Hospital, University of Pittsburgh Medical Center, University Medical Center Brackenridge, and Mount Sinai Medical Center. The investigators created and expanded existing data repositories for patient demographics, neuroimaging, plasma biomarkers, genetics, and multivariate outcomes thereby providing researchers and clinicians with the infrastructure to establish multidisciplinary, multicenter research networks and improve clinical research in the TBI field.(http://clinicaltrials. gov/ct2/show/NCT01565551) The first publication from this initiative was published in the Annals of Neurology in 2013.(Yuh et al., 2013) Limitations of Version 1 of the TBI CDEs were recognized and addressed by forming new Workgroups of experts to make recommendations for Version 2 of the TBI CDEs. In addition, results from the TRACK-TBI Pilot study were used to further refine the TBI CDEs in Version 2. The Workgroups were formed around the following types of TBI studies and/or study populations: Epidemiology Studies; Studies of Acute, Hospitalized Subjects; Moderate/Severe TBI Rehabilitation, and Mild TBI/Concussion Studies. The major differences between Version 1 and Version 2 of the TBI CDEs were: 1) a reduction to 22 Core CDEs (elements to be used for all clinical studies); 2) the inclusion of CDEs relevant to milder injuries and more chronic phases of TBI; 3) reorganization of the structure to include a second tier for Basic CDEs (elements highly relevant to specific types of studies but not to all studies); and 4) dropping the Emerging tier for lack of evidence to discriminate it from the Supplemental CDEs (a large set of optional CDEs that may be useful depending upon the aims of the study).(Hicks et al., 2013) Version 2 of the CDEs can be found at http://www.commondataelements. ninds.nih.gov.(NINDS, 2013) The CDE Catalog can be found on the Tools tab of the website, and includes the CDEs developed for several neurologic conditions (e.g., TBI, Epilepsy). The Catalog can be further searched and sorted for example by Sub-Disease (e.g., Moderate/Severe TBI Rehabilitation), Domain (e.g., Outcomes and Endpoints), Sub-Domain (e.g., Global Outcome), Classification (e.g., Core), CDE Name or Keywords, and Population (Adult, Pediatric).

The next step for Version 2 of the TBI CDEs is implementation. This is being facilitated by the Federal

Figure 1

TBI Common Data Elements categories with examples of elements.

Demographics and Clinical CDEs Characteristics • Demographics and Social Status • History • General Health and Significant Medical • Behavioral Injury Related Events • Injuries and Injury Severity • History/Early Presentation • Discharge Information Assessments and Exams • Laboratory and Toxicology Tests • Vital Signs and Physiology • Physical and Neurological Exam Treatments/Interventions • Medications and Surgical Procedures Biospecimen and Biomarker CDEs Plasma and DNA • Collection, processing and storage Radiologic Imaging CDEs CT and MRI • Pathoanatomic injury types • Definitions Outcomes and End Points Global Outcome • Glasgow Outcome Scale – Extended Neuropsychological Impairment • Verbal Learning Test • Wechsler Adult Intelligence Scale IV: Coding and Symbol Search Subtests • Trail Making Test Psychological Status • Brief Symptom Inventory – 18 Item Post-Concussive Symptoms • Rivermead Post-Concussion Questionnaire Social Role Participation • Craig Handicap Assessment and Reporting Quality of Life • Satisfaction with Life Scale

Interagency TBI Research (FITBIR) informatics system.

(FITBIR, 2013) FITBIR is sponsored by the U.S. Army Medical Research and Materiel Command, which received its funding through the Defense Medical Research and Development Program. FITBIR is supported by the following National Institutes of Health Institutes and Centers: National Institute of Neurological Disorders and Stroke and Center for Information Technology. The FITBIR informatics system was developed to share data across the TBI research field and to facilitate collaboration between laboratories, as well as interconnectivity with other informatics platforms. Sharing data, methodologies, and associated tools can accelerate research progress by allowing re-analysis of data, as well as reaggregation, integration, and rigorous comparison with other data, tools, and methods. Further information on FITBIR can be found at http:fitbir.nih.gov. The recent transfer of the TRACK-TBI Pilot dataset to FITBIR marks the beginning of an exciting new era in TBI research. Building on the power of standardization with the TBI-CDEs, FITBIR and other informatics tools will promote collaboration and accelerate research in TBI. About The Authors

Dr. Harrison-Felix has a Doctorate in Clinical Sciences and is an Assistant Clinical Professor in the Department of Physical Medicine and Rehabilitation at the University of Colorado, Denver. She is the Interim Director of Research at Craig Hospital, the Director of the National Institute on Disability and Rehabilitation Research-funded Traumatic BRAIN INJURY PROFESSIONAL

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Brain Injury Model Systems National Data and Statistical Center, the Co-Project Director of the Traumatic Brain Injury Model System located at Craig Hospital, and also a principal investigator or co-investigator on a number of other traumatic brain injury studies. Dr. Harrison-Felix has a 35-year career in disability and rehabilitation research with an emphasis in traumatic brain injury and spinal cord injury.

Geoffrey T. Manley, MD, PhD is the Chief of Neurosurgery at San Francisco General Hospital and Professor of Neurosurgery at the University of California San Francisco (UCSF). Dr. Manley is also the Co-Director and Principal Investigator, Brain and Spinal Injury Center (BASIC). As a trauma neurosurgeon, Dr. Manley has clinical interests in brain injury, spinal cord injury and neurocritical care. His translational laboratory to bedside research interests are widely published and disseminated through Dr. Manley’s lectureships to broad audiences nationally and internationally.

References 1.

Adelson PD, Pineda J, Bell MJ, Abend NS, Berger RP, Giza CC, Hotz G, Wainwright MS; Pediatric TBI Demographics and Clinical Assessment Workgroup. (2012) Common data elements for pediatric traumatic brain injury: recommendations from the Workgroup on demographics and clinical assessment. J Neurotrauma. 29:639-53.

2.

Berger RP, Beers SR, Papa L, Bell M; Pediatric TBI CDE Biospecimens and Biomarkers Workgroup. (2012) Common data elements for pediatric traumatic brain injury: recommendations from the biospecimens and biomarkers workgroup. J Neurotrauma. 29, 672-7.

3.

Duhaime, A. C., Gean, A. D., Haacke, E. M., Hicks, R., Wintermark, M., Mukherjee, P., Brody, D., Latour, L., and Riedy, G. (2010). Common data elements in radiologic imaging of traumatic brain injury. Arch. Phys. Med. Rehabil. 91, 1661–1666.

4.

Duhaime AC, Holshouser B, Hunter JV, Tong K. (2012) Common data elements for neuroimaging of traumatic brain injury: pediatric considerations. J Neurotrauma.

29:629-33.

5.

Federal Interagency TBI Research (FITBIR) Informatics System (2013) https://fitbir. nih.gov (accessed February 22, 2013).

6.

Gerring JP, Wade S. (2012) The essential role of psychosocial risk and protective factors in pediatric traumatic brain injury research. J Neurotrauma. 29:621-8.

7.

Hicks R, Giacino J, Harrison-Felix C, Manley G, Valadka A, Wilde EA. Progress in De-

Restore-Ragland

veloping Common Data Elements for Traumatic Brain Injury Research: Version 2 – The End of the Beginning. Submitted to J of Neurotrauma, 2013.

8.

Hunter JV, Wilde EA, Tong KA, Holshouser BA. (2012) Emerging imaging tools for use with traumatic brain injury research. J Neurotrauma. 229:654-71.

9.

Maas, A.I., Harrison–Felix, C.L., Menon, D., Adelson, P.D., Balkin, T., Bullock, R., Engel, D.C., Gordon, W., Langlois Orman, J., Lew, H.L., Robertson, C., Temkin, N., Valadka, A., Verfaellie, M., Wainwright, M., Wright, D.W., and Schwab, K. (2010a).

Common data elements for traumatic brain injury: recommendations from the interagency Workgroup on demographics and clinical assessment. Arch. Phys. Med. Rehabil.

91, 1641–1649.

10.

Manley, G.T., Diaz–Arrastia, R., Brophy, M., Engel, D., Goodman, C., Gwinn, K., Veenstra, T.D., Ling, G., Ottens, A.K., Tortella, F., and Hayes, R.L. (2010). Common data elements for traumatic brain injury: recommendations from the biospecimens and biomarkers Workgroup. Arch. Phys. Med. Rehabil., 91, 1667–1672.

11.

McCauley SR, Wilde EA, Anderson VA, Bedell G, Beers SR, Campbell TF, Chapman SB, Ewing-Cobbs L, Gerring JP, Gioia GA, Levin HS, Michaud LJ, Prasad MR, Swaine BR, Turkstra LS, Wade SL, Yeates KO; Pediatric TBI Outcomes Workgroup. (2012) Recommendations for the use of common outcome measures in pediatric traumatic brain injury research. J Neurotrauma. 29:678-705.

12.

Miller AC, Odenkirchen J, Duhaime AC, Hicks R. (2012) Common data elements for research on traumatic brain injury: pediatric considerations. J Neurotrauma. 29:634-8.

13.

National Institute of Neurological Disorders and Stroke. (2013) NINDS common data elements: traumatic brain injury CDE standards. http://www.commondataelements. ninds.nih.gov/TBI.aspx#tab=Data_Standards (accessed February 22, 2013).

14.

Thurmond, V.A., Hicks, R., Gleason, T., Miller, A.C., Szuflita, N., Orman, J., and Schwab, K. (2010). Advancing integrated research in psychological health and traumatic brain injury: common data elements (CDE). Arch. Phys. Med. Rehabil. 91, 1633–1636.

15.

Whyte, J., Vasterling, J., and Manley, G. T. (2010). Common data elements for research on traumatic brain injury and psychological health: current status and future development. Arch. Phys. Med. Rehabil., 91, 1692–1696.

16.

Wilde, E.A., Whiteneck, G.G., Bogner, J., Bushnik, T., Cifu, D.X., Dikmen, S., French, L., Giacino, J.T., Hart, T., Malec, J.F., Millis, S.R., Novack, T.A., Sherer, M., Tulsky, D.S., Vanderploeg, R.D., and von Steinbuechel, N. (2010). Recommendations for the use of common outcome measures in traumatic brain injury research. Arch. Phys. Med. Rehabil. 91, 1650–1660.

17.

Yuh EL, Mukherjee P, Lingsma HF, Yue JK, Ferguson AR, Gordon WA, Valadka AB,Schnyer DM, Okonkwo DO, Maas AI, Manley GT; and the TRACK-TBI Investigators. (2013) Magnetic resonance imaging improves 3-month outcome prediction in mild traumatic brain injury. Ann Neurol, 73(2):224-35.

Restore-Roswell

Restore-Lilburn

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).

www.restorehealthgroup.com 800-437-7972 ext 8251 26 BRAIN INJURY PROFESSIONAL

Neuro Continuum of Care

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LIFE EXPECTANCY AFTER TBI

Cynthia Harrison-Felix, PhD

Investigators at Craig Hospital have led four studies to determine if life expectancy changes after traumatic brain injury (TBI). The purpose of these studies was to investigate survival, life expectancy, risk factors for death, & causes of death in individuals with TBI. The first study included 2,178 individuals who were 16 years of age or older with moderate to severe TBI who received TBI inpatient rehabilitation between 1988 through 2001 in one of 15 National Institute on Disability and Rehabilitation Research (NIDRR) funded TBI Model Systems (TBIMS), with their vital status ascertained up to 13 years post-injury.(Harrison-Felix et al., 2004, 2006) This study determined that individuals with TBI were twice as likely to die compared to individuals in the general population of similar age, gender and race. Life expectancy was shortened between 5 and 9 years depending on age, race and gender, with an estimated average life expectancy reduction of 7 years.

After 1 year post-injury, compared to individuals in the general population of similar age, gender and race, individuals with TBI were: 37 times more likely to die of seizures; 12 times more likely to die of septicemia; 4 times more likely to die of pneumonia; 3 times more likely to die of other respiratory conditions (excluding pneumonia), digestive conditions and all types of external causes of injury/poisoning. Independent risk factors for death after 1 year post TBI were: older age at injury; not employed at injury; and greater disability at rehabilitation discharge.

The second study included 1,678 individuals who were 16 years of age or older with TBI admitted to Craig Hospital within 1 year of injury between 1961 through 2002, with their vital status ascertained up to 41 years post-injury.(Harrison-Felix et al., 2009) This study determined that individuals with TBI were one and a half times more likely to die compared to individuals in the general population of similar age, gender and race. Life expectancy was shortened between 3 and 6 years depending on age, race and gender, with an estimated average life expectancy reduction of 4 years.

After 1 year post-injury, compared to individuals in the general population of similar age, gender and race, individuals with TBI were: 49 times more likely to die of aspiration pneumonia; 22 times more likely to die of seizures; 4 times more likely to die of pneumonia; 3 times more likely to commit suicide; 2.5 times more likely to die of digestive conditions; and 3 times more likely to die of all types of external causes of injury/poisoning. Independent risk factors for death after 1 year post TBI were: older age at injury; 28 BRAIN INJURY PROFESSIONAL

earlier year of injury; being male; less education at rehabilitation admission; longer hospitalization; and being in a vegetative state at rehabilitation discharge.

The third study included 18,998 Colorado (CO) residents of all ages discharged from CO acute hospitals with TBI between 1998 through 2003, with their vital status ascertained up to 8 years post-injury.(Ventura et al., 2010) This study determined that individuals with TBI were about 2.5 times more likely to die than individuals of comparable age, gender and race from the CO general population. Life expectancy was shortened between 2 and 14 years depending on age, gender, race, with an estimated average life expectancy reduction of about 8 years. Compared to individuals in the CO general population of similar age, gender and race, individuals with TBI were: 15 times more likely to die of seizures; 5 times more likely to die of mental/behavioral problems (e.g., dementia); 3 times more likely to die of aspiration pneumonia, nervous system conditions (e.g., Alzheimer’s), pneumonia, sepsis, digestive conditions and assaults; and 2 times more likely to die of suicide, circulatory conditions and unintentional injuries. Independent risk factors for death varied by age and included older age at injury, more severe injuries, male gender, fall related injuries, more comorbid conditions, discharge to another health care facility or outpatient care, and residing in a metropolitan area.

The fourth study, an update to the first study, included 8,573 individuals who were 16 years of age or older with moderate to severe TBI who received TBI inpatient rehabilitation between 1988 through 2008 in one of 20 NIDRR-funded TBIMS, with their vital status ascertained up to 20 years post-injury.(Harrison-Felix et al., 2012) This study determined that individuals with TBI were 2.35 times more likely to die compared to individuals in the general population of similar age, gender and race. Life expectancy was shortened between 3 and 12 years depending on age, race and gender, with an estimated average life expectancy reduction of 7 years.

Compared to individuals in the general population of similar age, gender and race, individuals with TBI were: 34 times more likely to die of seizures; 11 times more likely to die of aspiration pneumonia; 7 times more likely to die of sepsis; 6 times more likely to die of pneumonia; 5 times more likely to die of unintentional injuries; 4 times more likely to die of homicide, and all external causes of injury; 3 times more likely to die of respiratory conditions, and mental/behavioral (dementia) conditions; 2 times more likely to

die of suicide, nervous system (Alzheimer’s) and digestive conditions; and 1.3 times more likely to die of circulatory conditions. Independent risk factors for death were: older age at injury; not being employed at injury; divorced, widowed or separated at injury; fall or violence related TBI; being male; greater disability at rehabilitation discharge; later year of injury; less days of unconsciousness; and not having a spinal cord injury.

In summary, these studies show that individuals with TBI who receive inpatient acute care and/or inpatient rehabilitation are at about 2 times greater risk of death. Their life expectancy is reduced an average of 4 to 8 years. They are at much greater risk of death due to seizures, aspiration pneumonia and sepsis; but also at greater risk of death due to pneumonia, suicide, external causes of injury, digestive, mental, and nervous system conditions. Risk factors related to death are demographic/socio-economic factors such as age, gender, employment, education, and urban residence; injury related factors such as etiology and severity of injury; and level of disability. Risk factors for death and causes of death identified in these studies can be used as indicators to monitor individuals with TBI for intervention to reduce excess mortality.

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References

Harrison-Felix, C., Kreider, S., Arango-Lasprilla, J.C., Brown, A.W., Dijkers, M.P., Hammond, F.M., Kolakowsky-Hayner, S.A., Hirshson C., Whiteneck, G., Zasler, N.D. Life Expectancy following Rehabilitation: a NIDRR Traumatic Brain Injury Model Systems Study. J Head Trauma Rehabil 2012;27(6):E69-E80.

Ventura, T., Harrison-Felix, C., Carlson, N., DiGuiseppi, C., Gabella, B., Brown, A., DeVivo, M., Whiteneck, G. Mortality after discharge from acute care hospitalization with traumatic brain injury: a population-based study. Arch Phys Med Rehabil 2010;91:20-9.

Harrison-Felix, C., L., Whiteneck, G., G., Jha, A., DeVivo, M., J., Hammond, F., M., Hart, D., M. Mortality Over Four Decades Following Traumatic Brain Injury Rehabilitation: A Retrospective Cohort Study. Arch Phys Med Rehabil 2009;90:1506-13.

Harrison-Felix, C., Whiteneck, G., DeVivo, M., Hammond, F.M., Jha, A. Causes of Death after 1 Year Postinjury among Individuals with Traumatic Brain Injury. J Head Trauma Rehabil 2006;21(1):15–26.

Harrison-Felix, C., Whiteneck, G., DeVivo, M., Hammond, F.M., Jha, A. Mortality Following Rehabilitation in the Traumatic Brain Injury Model Systems of Care. NeuroRehabilitation 2004;19(1):45-54.

About the Author

Dr. Harrison-Felix, PhD, has a Doctorate in Clinical Sciences and is an Assistant Clinical Professor in the Department of Physical Medicine and Rehabilitation at the University of Colorado, Denver. She is the Interim Director of Research at Craig Hospital, the Director of the National Institute on Disability and Rehabilitation Research-funded Traumatic Brain Injury Model Systems National Data and Statistical Center, the Co-Project Director of the Traumatic Brain Injury Model System located at Craig Hospital, and also a principal investigator or co-investigator on a number of other traumatic brain injury studies. Dr. Harrison-Felix has a 35-year career in disability and rehabilitation research with an emphasis in traumatic brain injury and spinal cord injury.

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What is Life Care Planning?

Harvey E. Jacobs, PhD, CLCP

Planning for lifetime needs is a complex and never ending process, especially when it involves chronic illness or disability. Then, the challenges of identifying and accounting for the normal vagaries of daily life over time are compounded by the nature, extent and course of associated handicapping conditions. The goal of a life care plan is to document these conditions and identify ways to reduce or eliminate the functional changes and social disadvantages that a person faces. Effective life care planning is a comprehensive and deliberative process.

As established by the International Academy of Life Care Planners in 2003, The life care plan is a dynamic document based upon published standards of practice, comprehensive assessment, data analysis, and research, which provides an organized, concise plan for current and future needs with associated costs for individuals who have experienced catastrophic injury or have chronic health care needs.

Life care plans are multi-dimensional. They are based on medical, psychological, rehabilitation and case management foundations.

Well-developed plans utilize standardized methodologies to establish reliable and valid findings. Given the same information, two properly trained and certified life care planners should independently produce equivalent recommendations. Life care planners do not create the treatment recommendations, but coordinate the advice and recommendations of involved parties. This obviously involves treating professionals, support staff and services. However, it directly involves the individual of focus, family members, other key stakeholders, as well as where the person lives. Two people with similar rehabilitative needs may require very different service approaches according to their life histories, comorbidities, locality, cultures and social constellations. As a result, each life care plan is an individually derived document.

Life care plans can also change over time according to changes in a person’s life circumstances, thereby requiring intermittent re-evaluation.

Good life care plans involve pro-active recommendations that optimize function and life quality as compared to reacting to problems. It is frequently possible to avoid potential complications with careful deliberation. Good life care plans are coordinated, noting the interrelationships between the many needs a person may require and weaving services and supports within a person’s daily life patterns in a practical, efficient and “life friendly” manner. Good life care plans are predictive and 30 BRAIN INJURY PROFESSIONAL

support recommendations with appropriate clinical practice guidelines and research literature. Finally, good life care plans answer questions rather than raise them. They educate all parties to the nature of disability, life span and effective approaches and serve as a roadmap for all involved parties.

While life care plans are frequently associated with personal injury or mal-practice litigation, they are also widely used by insurance companies and trusts to determine future needs and costs. While identifying long-term costs is one product of a life care plan, a person’s needs, rather than funding ultimately direct the planning process. In this manner the full spectrum of the person’s needs and opportunities are recognized. This allows prioritization of services if incomplete funding is available. Life care planning should also begin early in the rehabilitation process to coordinate diverse information from so many different parties.

life care planning resources Foundation for Life Care Planning Research: www.flcpr.org International Academy of Life Care Planners: www.rehabpro.org/sectionsialcp/careplanneroffer American Association of Nurse Life Care Planners: www.aanlcp.org The Care Planner Network: www.careplanners.net

References

Deutsch PM. 2013. Life Care Planning. In: JH Stone, M Blouin, editors. International Encyclopedia of Rehabilitation. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/18/ Riddick-Grisham S, Deming LM. 2011. Pediatric Life Care Planning and Case Management, Second Edition. CRC Press: Boca Raton, Florida.

Weed RO, Berens DE. 2009. Life Care Planning and Case Management Handbook, Third Edition.

CRC Press: Boca Raton, Florida.

About The Author

Dr. Jacobs, PhD, is a licensed clinical psychologist and a certified life care planner. Now in private practice, he has served on medical school faculties, worked on-staff, in administrative roles and as a consultant to numerous programs and facilities. His current interests include life care planning; rehabilitation for neurological, psychiatric, medical and intellectual impairments; complex cases; behavior analysis; and program development.

Jacobs has published and lectured widely and is the recipient of numerous public and private grants. He can be reached at www.harveyjacobs.net.

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Family Management: A Process Approach for Quality Outcomes

Melissa Abate, LMSW, Kent Hamstra, MA, Becca Bixler, LCSW, and Alan Weintraub, MD

Following a catastrophic traumatic brain injury (TBI), there is a plethora of logistical, insurance, and psychosocial issues which arise that are overwhelming to families. This will always present a challenge to clinicians on how best to educate, support and align expectations through a long arduous continuum of care.

Traditionally patients and families are assigned a case manager, discharge planner, and social worker to coordinate these services.

The expertise of a Patient Family Service (PFS) counselor can meet all these needs and create a template for team process and communication over an indefinite period of time. The PFS counselor helps families navigate their insurance, creates the best discharge plan possible, and provides supportive counseling and education. They are a patient/family advocate, care team liaison, and life coach. The holistic approach creates a point person for families and an anchor to begin to process the logistical and emotional implications of a new normal of “living with the characterologically altered brain injury patient” (Lezak, 1978).

After the unexpected life threatening event resulting in a catastrophic TBI and associated polytrauma, families face many conflicting messages conveyed by health care professionals regarding survival, disability, time frames, and outcomes. This often results in family members experiencing untoward anxiety, confusion and a sense of being overwhelmed. Furthermore families sometimes experience “iatrogenic mistrust” toward the healthcare system and its providers (Berrol). Trust is identified as an essential element if one is to begin to feel a place of belonging and unity (Dass, 1985). A sense of belonging and unity insulates a family from being lost and overwhelmed in the recovery process. This trust can be re-established through eight key points of family management and successfully aligning expectations; 1) Orientation 2) Initial conference 3) Family support group 4) Family training and education 5) Therapeutic recreation and community outings 6) Interim family conference 7) Discharge planning 8) Family community follow-up The primary goal in the beginning of the rehabilitation stay 32 BRAIN INJURY PROFESSIONAL

is to develop trust with the patient and family as they start in a new environment. Allowing a family to share the story of their loved one, develop a routine and structure for the family, and build rapport creates a safe haven. The use of a single point person who can answer funding, logistical, and practical questions decreases the psychological distress of the family. A written brain injury handbook and other customized educational materials are a valuable resource for families that often have difficult time retaining information due to the stress of their life situation.

As patients and families settle in, the rehabilitation team needs to appreciate all pre and post injury relevant psychosocial factors that will have interplay with the neurology of differing types and severities of TBI and anticipate critical neurological, functional, and planning milestones. Combining this with a thorough understanding of all aspects of short and long-term private/public insurance funding and knowledge of community-based resources will further help to align expectations and reassure the family.

Scheduled assessments and discussions both before and during the initial interdisciplinary conference help to accomplish this goal. It is a shift in the paradigm to include the family as an intricate part of the rehabilitation team. This partnership gives families a sense of confidence in their abilities to contribute, assume responsibility in decision-making, to clarify their personal needs, and to learn to ask for help. The family then experiences an installation of hope for a better outcome (Yalom, 1985).

Therapeutic goals will change as the patient’s rehabilitation progresses and the family adjusts to the new system of care. The focus on creating structure, routine, and fostering interpersonal learning through a family support group is useful (Yalom, 1985).

Developing a context for mutual support and aide reduces feelings of isolation and inoculates a family from psychological distress, anxiety, and depression.

Throughout the inpatient stay as families allow, caregiver training occurs and therapeutic home passes are encouraged to foster experiential learning whilst still having the support of the rehabilitation team. Families gain confidence in their ability to care for their loved one, while continuing to benefit from the expertise of the hospital staff. Interim conferences review progress and realign expectations through short-term goals and honest conversations about what the new normal will look like (Yalom, 1985).

With discharge from an inpatient setting approaching, the rehabilitation team prepares the family for the transition home and assuages anxieties and fears through repetitive training and tangible support. The task is to encourage a balance between before injury life and the new normal to achieve long term quality adjustment.

Beyond discharge, the goal becomes individualizing a rehabilitation plan for transforming learned skills into the real world and a resumption of a quality of life that is relevant and meaningful to the patient, their family, and support system. Families need to start to embrace an attitude that real life is therapeutic.

They need counseling to allow their brain injured family member to feel more independent through promoting emotional dignity and empowerment while balancing risks (Condeluci). Also, formalized follow-up contact by PFS counselors provides connection, support, and problem-solving to maintain successful longterm outcomes. A single point person for follow-up logistically streamlines inevitable communication needs with health care resources, aides in keeping long-term financial benefits available, and ensures the patient and family does not become isolated.

Success is grounded in the rehabilitation team and specialized family management through the aforementioned eight key points. A PFS counselor can be a guide through the entirety of acute and post-acute brain injury rehabilitation and should stay connected until there is a community support system in place.

In summary, the process of recovering from a brain injury is a long and bumpy road. Early intervention with patients and families, developing trust, and assisting families through counseling, repeated explanation of insurance benefits, and creative

use of community-based resources allows for the best quality of life outcomes possible.

References

Condeluci, Al. Lecture and workshop series.

Dass, Ram & Gorman, Paul. How can I help? Stories and Reflection on Service. Knopf, New York, 1985.

Lezak, Muriel. Living with the Characterologically Altered Brain Injured Patient. J Clinical Psychiatry, 1978; (39): 592-598.

Hosack, K. & Rocchio, C. Serving families of persons with severe brain injury in an era of managed care. J Head Trauma Rehabilitation, 1995; 10 (2): 57-65.

Yalom, Irvin D. The Theory and Practice of Group Psychotherapy, Third edition, 1985.

About the Author

Melissa Abate, LMSW, came to Craig in 2005 on the inpatient TBI team. Melissa earned her MSW at Yeshiva University in New York City.

She has been active in post graduate studies in family systems. Melissa is a member of NASW and the CO Brain Injury Collaborative, ACRM. Becca Bixler, LCSW, came to Craig in 2012 on the outpatient TBI team.

Becca earned her MSW at the University of Denver in Denver, Colorado.

She has a certificate in Trauma Studies and is a member of the Ethics Committee at The Denver Hospice.

Kent Hamstra, MA, came to Craig Hospital in 1987. Kent earned his MA in Rehabilitation Counseling at the University of Iowa in Iowa City.

He has worked with TBI for over 20 years.

Alan Weintraub, MD, has been Medical Director of the Brain Injury Program at Craig Hospital since 1986. He also is an Assistant Professor at the University of Colorado Health Sciences Center .For over 25 years; Dr. Weintraub has lectured extensively to broad audiences, and written on a number of specific clinical and research topics related to both traumatic and acquired brain injury.

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legal spotlight What to Expect When you Become Involved in Brain Injury Litigation When I was asked to write about this topic, I couldn’t help but think about the fact that no two brain injury cases are ever alike, and in the spirit of the winter season, it is only fitting that we draw an analogy between the diversity of brain injury cases and snowflakes in their infinite varied forms. Like snowflakes, brain injury cases take on many shapes and sizes and are molded by the facts of the case, the particular client, the particular defendant(s), the severity of the injuries, the venue, and more. However, similar to the predictability of a snowflake’s size and pattern, which depend on temperature and moisture content in the air, there is a certain level of predictability or symmetry in most brain injury litigation cases.

First, brain injury litigation is especially intense, intrusive, and time-consuming for all parties involved. Clients with brain injuries and their loved ones often become overwhelmed and flurried with the litigation process. The client, who is still recovering from a brain injury, has to face the added pressure of depositions, mediation and/or trial. It is our responsibility as brain injury professionals to go beyond our professional duties and help our clients/patients weather the storm by providing hope, resources and guidance.

By providing continuous communication and support, the medical and legal teams can better equip the clients, and their families, to handle the blizzard of pressures they will face. It is important to take the time to explain the process to the client at all stages of litigation and address their concerns so that any anxiety evaporates or minimalizes. Every brain injury litigation case is unique, but as sure as every snowflake has six sides, clients with brain injuries and their families will need attentive care and comfort from their legal and medical teams.

Another predictable pattern of brain injury litigation is the type of defense tactic commonly used to create a cooling effect on the case. Their typical strategy is to delay the trial. However, due to the nature of traumatic brain injuries, which require a larger window of time to determine the extent of the injury, the delay tactic actually lends itself to brain injury litigation. To counter the utility of delay, defense lawyers will oftentimes precipitate trial. Therefore, it is of utmost importance for the legal team to act swiftly and request all pertinent records, ensure that treaters and experts are aligned, and have all the documents needed to evaluate the client’s injuries as soon as possible. Early and thorough preparation for the brain injury litigation snowstorm is necessary, no matter how the case is defended.

Although brain injuries differ in type and severity, the defense will usually play down the injury by alleging a pre-existing condition, behavior or disorder. The defense will request every document regarding the client’s past, including all known medical, school, prior

34 BRAIN INJURY PROFESSIONAL

accident and employment records, and attempt to find anything that could demonstrate a pre-existing condition, behavior or disorder. In order to guard against this defense tactic, it is vital to have open lines of communication with the client and their families regarding any potential issues from the client’s past that could affect the case. The legal team must make sure that all treating physicians and experts have a complete record and are prepared to dispel the pre-existing condition theory. Anticipating potential issues before the storm arrives is the best way to fend off the frostbite.

Having represented numerous clients with traumatic brain injury, I’ve come to the realization that no matter how adept you are at managing your client, clouding defense theories, or preparing your experts for a successful outcome, it is impossible to obtain a meaningful “win” for your client without a collaborative effort from the legal team and healthcare professionals. Brain injury litigation coincides with the most vulnerable stage of a brain injury patient’s life. The patient and their families are not only focused on the recovery forecast, but also on financial, time and resource constraints. Thus, only through the concerted and combined efforts of the legal and healthcare teams will the client/patient achieve a better outcome.

About the Author

Frank Toral is the Senior Partner of Toral Garcia Battista, a Florida-based law firm focusing on brain and spinal cord injury cases.

Frank is a passionate advocate for brain and spinal cord injury survivors and their families and has served in various leadership and advisory roles with multiple organizations including Brain Injury Association of Florida, Brain Injury Association of America, Sarah Jane Brain Foundation and the University of Florida Presidents Council. Frank received his Bachelor of Science in Political Science from the University of Florida and his Juris Doctorate from Shepard Broad Law School at Nova Southeastern University. Frank is a frequent speaker and contributor on Brain injury topics and issues and has also authored the handbook Brain Injury: Where do we go from here? Frank founded the Toral Family Foundation whose mission is to collaborate with the healthcare community to improve the lives of all persons with a brain or spinal cord injury through research, education and access to resources.

conferences 2014

February 15 - 18 – American Neurospsychiatric Association 25th Annual Meeting, Seattle, Washington. For more information, visit www. anpaonline.org

June 3-6 – 45th Annual Meeting and Scientific Sessions of the Canadian Association of Neuroscience Nurses, Alberta, Canada. For more information, visit http://cann.ca October

march

7-11 – 91st Annual ACRM Conference, Toronto, Ontario, Canada.

For more information, visit www.acrm.org

19-22 – IBIA Tenth World Congress on Brain Injury, San Francisco, CA. For more information, visit www.internationalbrain.org

24-27 – American Association of Nurse Life Care Planners 2014 Annual Conference, Atlanta, Georgia. For more information, visit www.aanlcp.org

19-22 – 27th NABIS Annual Conference on Brain Injury in Legal Issues, San Francisco, California. For more information, visit www.nabis.org .

26-27 – 34th Annual Neurorehabilitation Conference on Traumatic Brain Injury, Stroke, and Other Neurological Disorders, Cambridge, Massachusetts. For more information, visit www.gettingbacktolife.com

April 3-6 – American Occupational Therapy Association Annual Conference and Expo, Baltimore, Maryland. For more information, visit www.aota.org/conference.aspx 8-12 – World Congress for Neurorehabilitation, Istanbul, Turkey.

For more information, visit wfnr.co.uk 16-17 – 4th Annual Traumatic Brain Injury Conference, Washington, D.C.. For more information, visit tbiconference.com .

November 12-15 – National Academy of Neuropsychology 34th Annual Conference, Fajardo, Puerto Rico. For more information, please visit www.nanonline.org 13-16 – AAPM&R 2014 Annual Assembly, San Diego, California.

For more information, visit www.aapmr.org

30-2 – The Second Quadrennial Alaska Brain Injury Conference, Anchorage, Alaska. For more information visit, www.nabis.org

2015

January May TBD – Galveston Brain Injury Conference, Galveston, Texas. For more information, visit http://shp.utmb.edu/Scholarships/MoodyPrize/ conference.asp 1-2 – Rehabilitation of the Adult and Child with Traumatic Brain Injury: Practical Solutions to Real World Problems, Williamsburg, VA. For more information, visit www.tbiconferences.org 1-2 – 38th Annual Brain Injury Rehabilitation Conference, Williamsburg, VA. For more information, visit tbiconference.org .

16-17 – Brain Injury Rehab Conference, San Diego, California.

For more information, visit www.scripps.org/events .

16-17 – Brain Injury Rehabilitation Conference, San Diego, California. For more information, visit www.scripps.org/events/braininjury-rehabilitation-conference-may-16-2014

11-14 – 2015 Brain Injury Summit: A Meeting of the Minds, Vail, Colorado. For more information, visit http://braininjurysummit2015.org April 29-2 – NABIS 12th Annual Conference on Brain Injury, San Antonio, Texas. For more information, visit www.nabis.org 29-2 – NABIS 28th Annual Conference on Legal Issues in Brain Injury, San Antonio, Texas. For more information, visit www.nabis.org July TBD – Sick Kids Centre for Brain & Behavior Biennial Conference: Brain Injury in Children, Toronto, Ontario, Canada.

For more information, visit www.sickkids.ca/BrainNetwork .

BRAIN INJURY PROFESSIONAL

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brain bytes Could a ‘Trojan horse’ better identify traumatic brain injury?

Accurately diagnosing traumatic brain injuries and concussions is difficult, as standard CT or MRI scans can’t see most changes to the brain caused by these injuries.

Clinicians must rely on patients accurately and candidly describing their symptoms, which many patients – such as soldiers and athletes – are hesitant to do for fear of being removed from action with their unit or team.

Borrowing a tactic used to identify lung infections, University of Virginia School of Medicine researchers have discovered a potential method to identify traumatic brain injuries that uses positron emission tomography scans and the body’s immune response to a brain injury.

Backed by funding from the U.S. military’s Defense Health Program, the U.Va. researchers – radiologist and neuroscientist Dr. James Stone, and radiology researchers Stuart Berr, Jiang He and Dongfeng Pan – presented their initial findings at the recent Military Health System Research Symposium.

Existing clinical methods for imaging traumatic brain injuries are only able to identify alterations to the brain’s structure at a macroscopic level, such as bruising, tissue tears or blood accumulation. However, most changes to the brain that result in traumatic brain injury symptoms are typically only visible microscopically, either at the cellular or molecular level.

Helmets Fail to Protect from Brain Injury The original purpose of the helmets was to prevent penetrating and focal head injuries, which were the common cause of fatality.

Over time, head protection for all sporting interests has evolved such that outwardly visible head injuries are almost unheard of.

However, the mechanism by which injury is caused to the brain is distinctly different from that which causes head injury. Unfortunately, the standard against which helmet performance is gauged has not been updated to reflect demands for brain protection. Consequently, while the head is well protected, the brain is left relatively unprotected from trauma.

Dr. John Lloyd, a Tampabay biomechanist, has developed and published a modification to the standard helmet test apparatus, which allows the measurement of both head and brain injury protection. Using this system, Dr. Lloyd has tested a variety of

36 BRAIN INJURY PROFESSIONAL

different headgear, including football helmets as well as helmets for other sports. The results are quite alarming.

Interestingly, we learned that, while football helmets provide excellent protection from skull fracture and coup-contrecoup injuries, on average these helmets only provide 20% protection from diffuse brain injuries, including concussion.

Of greater concern, certain categories of sports helmets, including Ski helmets, actually increase the risk of brain injury.

This is because the added size and mass of the helmet increases angular momentum, which is known to increase risk of brain injury.

Considering these results, is it time that we re-prioritize the need for brain protection over head protection? After all, nobody ever died from just a skull fracture, yet brain injuries can be devastating. For more information, contact John Lloyd, PhD, CPE, CBIS, www.DrBiomechanics.com.

Children with brain injuries nearly twice as likely to suffer from depression In a study presented Oct. 25 at the American Academy of Pediatrics National Conference and Exhibition in Orlando, researchers found that compared to other children, 15 percent of those with brain injuries or concussions were diagnosed as depressed—a 4.9 fold increase in the odds of diagnosed depression.

Adults with head injuries are known to be at high risk for depression, and yet little research had been done on the topic related to children. In the abstract, “Depression in Children Diagnosed with Brain Injury or Concussion,” presented Oct. 25 at the American Academy of Pediatrics (AAP) National Conference and Exhibition in Orlando, researchers sought to identify the prevalence of depression in children with brain injuries, including concussions, in the U.S. Using data from the 2007 National Survey of Children’s Health, researchers identified more than 2,000 children with brain injuries, reflecting the national child brain injury rate of 1.9 percent in 2007; and 3,112 children with diagnosed depression, mirroring the 3.7 percent national child depression rate that year. Compared to other children, 15 percent of those with brain injuries or concussions were diagnosed as depressed—a 4.9 fold increase in the odds of diagnosed depression.

“After adjustment for known predictors of depression in children like family structure, developmental delay and poor physical health, depression remained two times more likely in children with brain injury or concussion,” said study author Matthew C. Wylie, MD, author of the abstract, “Depression in Children Diagnosed with Brain Injury or Concussion.”

The study, the largest to look at an association between

brain injury and depression in children and adolescents, “may enable better prognostication for brain-injured children and facilitate identification of those at high risk of depression,” said Dr. Wylie.

Neuroscientists discover new ‘mini-neural computer’ in the brain Dendrites, the branch-like projections of neurons, were once thought to be passive wiring in the brain. But now researchers at the University of North Carolina at Chapel Hill have shown that these dendrites do more than relay information from one neuron to the next. They actively process information, multiplying the brain’s computing power “Suddenly, it’s as if the processing power of the brain is much greater than we had originally thought,” said Spencer Smith, PhD, an assistant professor in the UNC School of Medicine.

His team’s findings, published October 27 in the journal Nature, could change the way scientists think about long-standing scientific models of how neural circuitry functions in the brain, while also helping researchers better understand neurological disorders.

New test for TBI NeuroChaos Solutions is a medical technology company committed to developing products to objectively identify and monitor traumatic brain injury.

The company is developing portable, easy-to-use products that provide valuable information regarding the presence of TBI, its severity and the recovery period.

The NeuroChaos technology is expected to be useful to emergency room, sports and military physicians by providing a completely objective test on which to base their clinical decisions and patient recovery plans.

The company’s evaluation is designed to deliver a result in 10 minutes, making it easy for medical professionals in hospitals, military units and sports facilities to diagnose the extent of a brain injury and determine the best course of treatment.

The software will be submitted to the Food and Drug

Administration for regulatory clearance in early 2014 and approval is expected in time to go to market before the end of the year.

Alzheimer’s and TBI USA Today has reported on a study that found Alzheimer’s disease might be connected to concussions in some people.

A team from the Mayo Clinic in Rochester Minn., conducted brain scans on 448 older Minnesotans who had no signs of memory problems and 141 who did. Roughly 17% in both groups had had a brain injury earlier in life involving some loss of consciousness or memory.

Those who had no signs of memory problems had normal brain scans, regardless of their history of brain injury. Scans of those with memory problems and a history of brain injury were five times more likely to show a buildup of a brain protein long associated with Alzheimer’s Disease, says study author Michelle Mielke, an associate professor of epidemiology and neurology at the Mayo Clinic.

The study, published in the journal Neurology, examined people in their 70s and 80s who reported having an earlier head trauma -in most cases 50 or 60 years earlier when they were adolescents.

In those days, only the sickest people went to the doctor, so the brain injuries were probably quite significant, Mielke says.

Concussion can lead to depression years later Brain injury can lead immune-system brain cells to go on “high alert” and overreact to later immune challenges by becoming excessively inflammatory – a condition linked with depressive complications, a new animal study suggests. The research was recently published online in the journal Biological Psychiatry.

Researchers at The Ohio State University and the Institute for Behavioral Medicine Research say the findings could help explain some of the midlife mental-health issues suffered by individuals who experience multiple concussions as young adults, researchers say. And these depressive symptoms are likely inflammation-related, which means they may not respond to common antidepressants.

An added complication is that aging already increases brain inflammation. So on top of normal aging concerns, people who have had a TBI experience added inflammation caused by magnified immune responses to so-called “secondary challenges,” such as a second head injury, infections or other stressors.

In mice, these high-alert cells in the brain – called microglia – had an exaggerated response to an immune challenge one month after a moderate brain injury. This increased brain inflammation corresponded with the development of depressive behaviors that were not observed in uninjured mice.

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literature review Crash Reel HBO Documentary Debuting at the Sundance Film Festival in January and soon to be released as a documentary

by HBO on Dec. 13 to select U.S. theatres, The Crash Reel is a story about a remarkable young athlete who sustains a brain injury in a snowboarding accident while training for the 2010 Vancouver Olympics. It was directed by Lucy Walker and is currently available through HBO On Demand.

The story is crisp, heartbreaking, enlightening, and as Kevin might say “chill”. This documentary highlights the snowboarding career of Kevin Pearce, a 2010 Vancouver Olympic hopeful from childhood risk-taking antics to his accident on the Park City half pipe on New Year’s eve 2009, 49 days before the Olympic games. He was one of the few boarders to ever beat friend and stiff competitor Shaun White in his prime and who was said to have had astonishing amplitude on the then new taller 22foot half pipe walls that were to debut in the 2010 Olympics.

While always challenged with the academics due to his dyslexia, Kevin excelled in the sport he loved the most, snowboarding.

At age 7 he convinced Burton Snowboards to make a kid’s competition board and was homeschooled so he could ski the entire boarding season. At age 19, 2007 was described as his “miracle year”, sweeping the snowboarding competitions. His skills brought him fame and respect among other boarders, a generous income and a remarkable confidence to push harder with more height and cooler tricks that no other boarder had done before.

The documentary pieces together footage of his career, his crash, and his severe brain trauma. After 26 days in intensive care followed by 3 months in rehabilitation, this film tracks him almost 3 years post injury. Initially Kevin fesses up to memory problems and difficulties with his vision. In addition, his family and doctors identify his impulsivity, tremors, cognitive challenges, and lack of insight. At one point while walking through the hallway at the hospital returning for an annual checkup, he meets a young guy in a chair who clearly has a severe brain injury and Kevin comments to his mother, “I was never like that, I was never like that.” His mother’s response, “Yes you were”, “Yes you were”.

Kevin is a champion that does not know how to fix his brain injury through the perseverance he has learned to be a champ.

He repeatedly asks “permission” from his doctors to resume snowboarding and his family attempts many interventions to share their concern and fear about his return. It is not until he joins friends at a nearby familiar boarding spot without his family knowing, that he realizes after repeated falls and failed attempts at small jumps that “this brain injury is not going anywhere.”

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This film is also about a remarkable family who supported a champion and faced their own guilt in encouraging their son’s passion that ended in tragedy. While in the acute hospital Kevin’s parents tell the story of their parallel path with another family who sat bedside with their son Mark following his ski accident.

Unfortunately Mark did not survive. Kevin’s brother Adam gave up his job so he could take on being his brothers full time support during rehab and who shot some of the film’s footage. Another brother, David, who has Down’s Syndrome contends with his own emotions of almost losing his brother and his fears about Kevin’s continued push to snowboard again. Through much of the film, David shows up as the articulate “emotional” consciousness and spokesperson for the family. Parallels are drawn to Kevin’s acceptance of his new disability due to brain injury and the challenges David has experienced with acceptance of his own disability throughout his life. The film also captures David’s 2003 Special Olympics downhill ski championship.

The film challenges the fan in their continued push for higher, faster and more risk and questions how far an athlete should go to respond to the ever increasing expectations of fans and sponsors.

As sports become more extreme, there will always be athletes willing to take the challenge. As one of the athletes interviewed said, “people want to see the crash.” This is even more heightened by interviews with a fellow snowboarder who sustained a second TBI and cannot reliably “point to his elbow” yet wants nothing more than to get back on his board. Other boarders talk about their multiple fractures and spinal injury, and the death of one of the first female Freestyle skiers, Sarah Burke in 2012 on the same half pipe in Park City where Kevin sustained his injury.

The Crash Reel is beautifully produced with artsy visuals and edgy vocals. Much of the footage was painstakingly arranged from family videos, commercial sports footage, and professional filming after his injury. It will serve as an exceptional film to help others know the life altering impact of a brain injury and the struggles of one person to redefine himself.

About the reviewer

Dr. Debra Braunling-McMorrow is the President and CEO of Learning Services. She serves on the board of the North American Brain Injury Society. Dr. McMorrow is a past chair of the American Academy for the Certification of Brain Injury Specialists (AACBIS) and has served on the Brain Injury Association of America’s board of executive directors. Additionally, Dr. McMorrow has served on several national committees, editorial boards, and peer review panels. Dr. McMorrow has published in numerous journals and books and has presented extensively in the field of brain injury rehabilitation. She has been working for persons with brain injuries for almost 30 years.

Acute Hospitalization – The book depicts common brain injuries through medical quality illustrations. It provides explanations of diagnostic tests, common equipment used in the ICU, and the acute hospital stage of brain injury rehabilitation.

Print version availiable NOW

Enhanced Book for the iPad – Experience the multi-touch enhanced book which includes video, audio, and interactive 3D illustrations.

Available soon in the Apple iBookStore

Visit our website for more information, to arrange a facility tour, or to make a referral.

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non-profit news NORTH AMERICAN BRAIN INJURY SOCIETY Attorneys and all those involved in brain injury litigation are encouraged to attend the 27th Annual Conference on Legal Issues in Brain Injury which this year will be held in conjunction with the International Brain Injury Association’s Tenth World Congress on Brain Injury, March 19-21, 2014. The conference will take place at the Hyatt Embarcadero Hotel in San Francisco, California. Included in the registration fee, attendees of the legal meeting will have access to all of the educational sessions of the World Congress – essentially two conferences in one. The World Congress will not be held in the United States again for many years, so don’t miss this unique opportunity to learn from an all-star cast of leading international brain injury experts!

NABIS is also pleased to announce that the 2nd Quadrennial Alaska Brain Injury Conference will be held on April 30– May 2, at the Marriott Hotel in Anchorage. This conference, entitled Shining a Light on Everyday Heroes; Supporting Brain Injury in Your Community, will have a strong focus on providing brain injury services rural and underserved communities.

Chaired by Tina Trudel, PhD, attendees at this conference will benefit from nationally and internationally recognized authorities on the subject of brain injury research, rehabilitation and long-term care. Specialty tracks specific to military and veterans (i.e. blast injuries and caring for wounded warriors) and tribal/rural topics (i.e. telehealth, and using technology to delivery medical and community based services) will be provided.

Finally, it’s not too early to mark your calendars for the 2015 NABIS meeting! In support of the International Brain Injury Association’s Tenth World Congress on Brain Injury, NABIS will not be holding its regular conference next year, and all NABIS members are encouraged to register for the World Congress in San Francisco. NABIS will be back with our regular meetings April 29–May 2, 2015, at the beautiful Westin Riverwalk Hotel in San Antonio, Texas! Details as they become available will be posted on the NABIS website, www.nabis.org.

Brain Injury association of america The Brain Injury Association of America (BIAA) has announced that Donald G. Stein, Ph.D. has been named as the recipient of the 2013 William Fields Caveness Award, and that Brent E. Masel, M.D. will receive the Sheldon Berrol M.D. Clinical Service Award. Awards will be presented at ACRM’s fall meeting in Orlando, FL in November. BIAA is actively lobbying for reauthorization of the TBI Act (H.R. 1098) to continue and expand protection and advocacy grant programs as well as the critical work of the Centers for Disease Control 40 BRAIN INJURY PROFESSIONAL

and Prevention. Please contact your congressional representative and ask him/her to co-sponsor the bill. Sens. Mark Kirk (R-IL) and Tim Johnson (D-SD) introduced S. 1027 on May 22, 2013 to improve, coordinate, and enhance rehabilitation research at the National Institutes of Health (NIH). The bipartisan legislation would implement some of the recommendations raised in the Final Report of the Blue Ribbon Panel on Medical Rehabilitation Research at NIH. BIAA will present the 2014 Brain Injury Business Practice College at the Green Valley Ranch Resort and Spa in Las Vegas, NV, Jan. 21-23, 2014. Sessions offered can enable business executives and managers to improve their business methods and metrics.

For more information, visit: www.biausa.org/businesspracticecollege.

DEFENSE CENTERS OF EXCELLENCE Since 2000, more than 280,000 service members sustained a traumatic brain injury (TBI). Approximately 84 percent of TBIs occur in a non-deployed setting and 82 percent are characterized as mild TBIs, more commonly known as concussions. Common causes of these TBs include crashes in privately owned and military vehicles, falls, sports and recreation activities, and military training.

In most cases, service members who sustain concussions recover fully and quickly. But for a small portion of service members, symptoms from a concussion can linger for months or longer, creating challenges with memory and thinking, personal relationships and other aspects of life.

The “Back to School Guide to Academic Success After Traumatic Brain Injury” is a free electronic resource for service members and veterans who have sustained a traumatic brain injury and plan to go back to school or may already be in school. The guide includes information they need to start their academic journey, from symptom management to choosing a school and adjusting to civilian campus culture. A comprehensive student resources section gives students access to websites that will help connect them with the appropriate people and organizations that can help answer questions and provide detailed information. The guide is available for download at www.dvbic.org/material/back-school-guide.

INTERNATIONAL BRAIN INJURY ASSOCIATION IBIA is delighted to announce that it received over 900 abstract submissions – a new record – for the Tenth World Congress on Brain Injury which will be held on March 19-22, 2014, at the Hyatt Embarcadero Hotel in San Francisco, California.

With an anticipated attendance of approximately 2000, the World Congress is expected to be the largest gathering of in-

ternational professionals working in the field of brain injury ever held. Delegates are comprised of physicians, psychologists and neuropsychologists, therapists, social workers, nurses, case managers, legal professionals, advocates and all others working in the field of brain injury.

The World Congress program will feature internationally recognized invited speakers, platform lectures, workshops, short oral presentations and poster sessions. Under that educational direction of IBIA President, David Arciniegas, MD, the theme of the Congress will be Neurotrauma, Technology, and Neurorehabilitation. The Congress seeks to provide an opportunity for establishing collegial relationships with international professionals focused on the care and/or service of persons with acquired brain injury and/or the science of brain injury research. State of the art research will be presented dealing with information spanning from basic science to clinical (coma to community) aspects of brain injury. And, in addition to world class educational content, the Congress organizers have arranged for a host of exciting social events and tours of San Francisco.

Administrators and marketing professionals should note that space is going quickly in the exhibit hall – marketing your product or service at the World Congress will bring you face-to-face with the decision makers and key opinion leaders who are shaping the future of brain injury research, treatment and rehabilitation. Exhibit space will be assigned on a first come, first served basis, so don’t miss this unique opportunity to promote your organization or company to this highly specialized and influential group of professionals!

Further details, including information on the preliminary program, exhibit and sponsorship opportunities, and registration and accommodation options are available on the IBIA website, www.internationalbrain.org.

The bill would authorize about $6 million annually to carry out Centers for Disease Control and Prevention research on preventing traumatic brain injury and state grants for surveillance of traumatic brain injuries. It also would authorize roughly $10 million annually for fiscal 2014 through 2018 for state grants to boost access to traumatic brain injury rehabilitation and provide advocacy services for people with traumatic brain injuries!

This advancement follows after several years of incredible work from our Public Policy Staff, Public Policy Committee, Board, membership and members of collaborating partners!

Please Save the Following Dates: • Brain Injury Awareness Day on Capitol Hill March 12, 2014 • 2014 SOS Conference October 27 - 30, 2014 in Philadelphia, PA! Information on Brain Injury Awareness Day, SOS, state TBI programs, NASHIA technical assistance, and other resources may be found at www.nashia.org

UNITED STATES BRAIN INJURY ALLIANCE The United States Brain Injury Alliance (USBIA) is pleased to welcome four new members to its Board of Trustees! Their combined wealth of knowledge and experience will strengthen USBIA’s commitment to improving lives of children and adults by preventing brain injuries, increasing awareness, promoting understanding, and building support. The four new members are: •

NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS Exciting news! NASHIA, its partners, and the Congressional TBI Taskforce, are pleased to announce that the Traumatic Brain Injury Act has been backed by House Energy and Commerce Committee!

On December 11, 2013, House lawmakers advanced legislation to reauthorize traumatic brain injury and poison control programs for five years.

In a swift markup, the House Energy and Commerce Committee approved the legislation that is expected to be considered under suspension of the rules in the first month or two of 2014.

Members of both parties stressed the importance of government-sponsored research particularly as it relates to military service members who suffer brain injuries in combat.

• • •

J. Charles (Chas) Haynes, Executive Director Collaborative Ependymoma Research Network (CERN) Foundation Tamara C. Valovich McLeod, PhD, ATC, FNATA John P. Wood, D.O., Endowed Chair for Sports Medicine and Professor, Athletic Training Program, A.T. Still University Harvey E. Jacobs, PhD. CLCP Licensed Clinical Psychologist / Certified Life Care Planner Ann Glang, PhD Co-Director, Center on Brain Injury Research and Training, University of Oregon

In addition, USBIA participated in One Voice Coalition, a collaboration with other national brain injury organizations to develop a federal position paper describing the unmet needs of people with brain injury. The report is available to download at: www.usbia.org. USBIA also participated in the recent HRSA’s Stakeholder’s Panel, and held their Annual Meeting at the NABIS conference where the organization exhibited.

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legislative roundup “After climbing a great hill, one only finds that there are many more hills to climb.”

— Nelson Mandela It seems Congress gets through one budget crisis only to face another one, usually self-imposed. After shutting down most of the federal government in October, Congress passed a continuing resolution to fund the federal government through January15th, 2014, along with requirement that Congress adopt a long-term budget plan by December 13th. The House and the Senate had previously passed its own version of a budget plan for Fiscal Year 2014 outlining spending levels and anticipated revenues. The legislative bodies were far apart on their plans, and convened a conference committee to come to a consensus. Sticking points included continuing sequestion – across the board cuts -- imposed in March; entitlement programs; and closing corporate tax loop holes to generate additional revenue.

While the budget resolution does not fund programs, it does provide estimated spending amounts available to appropriation committees who then divvy up the money for specific programs through the appropriations process. If Congress does not cancel sequestration as part of an agreement to fund the government beyond January 2014, agencies will continue to face shortfalls.

Failure to come up with a budget plan means that a second round of automatic spending budget cuts will take place early 2014. Meanwhile, the United States will probably hit the debt ceiling sometime in March.

The 113th Congress is on course to being the least productive Congress in history, having only passed 55 bills which have become law, as of mid-December. However, congressional committees are considering H.R. 1098, the Traumatic Brain Injury Act Reauthorization of 2013. The House Energy and Commerce Subcommittee on Health held a hearing on the bill in November and the full House Committee on Energy and Commerce approved the bill on December 11th. The bill should be considered by the full House after the first of the year. Senators Orrin Hatch (R-UT) and Bob Casey (D-PA) are planning to introduce a senate version after the first of the year. Congressional Brain Injury Task Force Co-chairs, Cong. Bill Pascrell, Jr. (D-NJ) and Tom Rooney (R-FL) introduced H.R. 1098.

The Task Force co-chairs have scheduled the Congressional Brain Injury Task Force Awareness Day for March 12, 2014. As in the past, the day will feature a fair comprised of informational exhibits on brain injury to be held in the Rayburn House Office Building Foyer, followed by a briefing and a reception to honor the Task Force.

The Congressional Kids’ Safety Caucus, a bipartisan coalition, has recently been formed to highlight injury prevention.

During the fall, the Caucus held an educational forum for members of Congress and their staff on data, research and emerging trends in childhood injury prevention. Through this Caucus and the Congressional Neuroscience Caucus, the Bipartisan Disabilities Caucus and the Congressional Brain Injury Task Force,

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advocates are able to collaborate with members of Congress and their staff to address prevention, research, disability services, as well as issues unique to brain injury.

Since the Senate failed to ratify the U.N. treaty on the Convention on the Rights of Persons with Disabilities last December, the Senate Foreign Relations Committee held two public hearings in the fall to resurrect support for the treaty. Although the United States has been a leader in ensuring the rights of persons with disabilities through the Americans with Disabilities Act, the Individuals with Disabilities Education Act and 504 of the Rehabilitation Act, the United States has not ratified the treaty. 138 other countries have already done so.

In October, the U.S. Department of Labor issued its final rule on extending the Fair Labor Standards Act’s minimum wage and overtime protections to most of the workers who provide essential home care assistance to elderly people and people with illnesses, injuries or disabilities, effective on January 1, 2015.

This change affects home health aides, personal care aides and certified nursing assistants by extending minimum wage and overtime protections to all direct care workers employed by home care agencies and other third parties. Fifteen states already extend state minimum wage and overtime protections to direct care workers, and an additional six states and the District of Columbia mandate state minimum wage protections.

Also in October, the Institute on Medicine and the National Research Council released its report on sports-related concussions in youth. A panel of experts and federal agencies met over the past year to review the science of sports-related concussions and public policies. The committee recommended that additional research be conducted to increase our understanding of diagnosis, recovery, and health effects of concussions, and to establish a national surveil¬lance system to accurately determine the inci-dence.

The Second Session of the 113th Congress begins January 6, 2014. There is still time for this Congress to pass legislation impacting brain injury research, rehabilitation and services before they begin focusing on the next election.

About the Editor

Susan L. Vaughn, S.L. Vaughn & Assoc., is the Director of Public Policy for the National Association of State Head Injury Administrators and consults with the Brain Injury Association of America on state policy issues. She retired from the State of Missouri in 2002, after working nearly 30 years in the field of disabilities and public policy. She served as the first director of the Missouri Head Injury Advisory Council, a position she held for17 years. She founded NASHIA in 1990, and served as its first president.

Real Challenges, Real Outcomes, Real Life Learning Services provides individualized treatment programs for adults with brain injuries in a real life setting. All of our nationwide locations offer a wide range of services designed to assist each resident in achieving the greatest level of independence, enabling them to successfully take on the challenges of a brain injury. Our approach to post acute neuro-rehabilitation allows each individual to acquire the tools necessary to live life on their terms.

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To learn more about our programs nationwide, call 888.419.9955, or visit learningservices.com.

Legal Representation Care Management Brain Injury Attorneys “In every serious injury case we have the opportunity to help make a difference in the recovery and the quality of life of our clients and their families that goes far beyond the legal scope.”

-Frank Toral, Esq., Senior Partner

Improving Lives through Caring, Commitment and Community Toral Garcia Battista Attorneys at Law firmly believe that the responsibility of a law practice is not simply a successful settlement but rather providing an individual who has suffered a lifealtering injury, the resources needed to lead a greater quality of life. Focusing on Traumatic Brain Injuries and Spinal Cord Injuries, the TGB firm structure supports care management in the medical and social elements of the clients’ situation through the employment of a team that includes a Registered Nurse and Licensed Clinical Social Worker.

The legal and care management team works collaboratively to address the comprehensive needs of the client and facilitate navigating the complex system of care.

The Toral Family Foundation, a 501(c)3 nonprofit organization based in Ft. Lauderdale Florida, is committed to collaborating with the healthcare community to improve the lives of all persons with a brain or spinal cord injury through research, education and access to resources. www.toralfamilyfoundation.org

1-877-TORAL-LAW 4780 Davie Rd., Suite 101 Ft. Lauderdale, FL 33314 www.torallaw.com 44 Tampa

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