RAINBOWVISIONS. Sensory. Defensiveness. and TBI PLUS. Treating extreme responses to common sensory stimuli

RAINBOWVISIONS FALL 2015 Volume XII No. 3 For and about the brain injury and spinal cord injury community. Rainbow Rehabilitation Centers, Inc. ww...
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RAINBOWVISIONS FALL 2015

Volume XII No. 3

For and about the brain injury and spinal cord injury community.

Rainbow Rehabilitation Centers, Inc.

www.rainbowrehab.com

Sensory and

TBI

Defensiveness Treating extreme responses to common sensory stimuli.

• PLUS Getting the GIST: A new program that enhances social communication. The Rise of Evidence-Based Medicine and its impact on guidelines for TBI treatment.

• PRESIDENT'S CORNER

RAISING THE BAR ON POST-ACUTE CARE

The future is bright with advances in treatment and approach to rehabilitation By Bill Buccalo, President

Rainbow Rehabilitation Centers

T

his month, the Michigan brain injury community descends upon Lansing for the Brain Injury Association of Michigan (BIAMI) annual conference. This is one of the nation’s largest educational events dedicated to individuals living with brain injury, their families, caregivers, community and institutional providers and suppliers, physicians, insurers, researchers, legal experts and more. I have been privileged to attend this conference for many years. And while I am so impressed with how far the field has come since the 1990s, I am more excited about the work yet to come. We have seen incredible advances in many aspects of treatment, care, and approach to rehabilitation following brain injury. Some of these advances have come in part due to research in the area of neuroscience, including unbelievable change in brain imaging capabilities and transformational changes in our understanding of the ability of the brain to continue to change sometimes long after injury (neuroplasticity). Knowledge of neuroplasticity brings with it great hope for continued recovery, a longer and happier life and greater independence. But the approach to post-acute treatment and care can vary significantly between healthcare providers, and the funding made available by different health plans results in significant differences in access to care. For this issue, Dr. Heidi Reyst authored three articles to discuss the national TBI Guidelines Project, which is a joint research project established in 2014 between the Brain Injury Association of America and the Brain Injury

2 | RAINBOWVISIONS • FALL 2015

Research Center at the Icahn School of Medicine at Mount Sinai. Dr. Reyst, who is participating in the guidelines project, discusses the project, the history of evidencebased medicine and its role in healthcare, and finally evidence-based guidelines. These articles provide an excellent understanding of where we have come and where the project is heading. The establishment of evidence-based guidelines for the post-acute care of people with traumatic brain injury could have broad and significant impacts on the treatment and planning, access to care, funding of rehabilitation, payer cost containment and authorization and, most importantly, patient outcomes. As the nation deals with ever-rising healthcare costs, people with traumatic brain injuries (TBI) struggle to access needed services post-hospital, states adopt and modify TBI Waiver programs, and the Michigan Legislature considers changes to the auto no-fault system, I encourage the TBI community to read these articles and to participate in the project over the final year and a half. The TBI Guidelines Project, while a big step in the right direction to help define evidence-based guidelines for care, is just one of many advances in the field going on at this time. The future is bright. The BIAMI conference will again be a wonderful opportunity to rub elbows with industry peers, experts, and friends in our never-ending quest to raise the bar on post-acute care. I hope to see you all in Lansing. ❚

• ON THE COVER

What causes Sensory Defensiveness, and how is it treated?

Page 4

Features

2

President's Corner



4

Medical Corner Sensory Defensiveness



8

Clinical News TBI Guidelines Project

14

Personal Perspective Nerico Johnson

16

Clinical News Evidence-Based Medicine

Bill Buccalo, President, Rainbow Rehabilitation Centers Samantha Fitzsimmons, OTR/L, CBIS Heidi Reyst, Ph.D., CBIST Katlyn Steele Heidi Reyst, Ph.D., CBIST

22 24

Conferences and Events Clinical News Evidence-Based Guidelines

Heidi Reyst, Ph.D., CBIST

30

Vocational Corner Getting the GIST

Carolyn A. Scott, Ph.D., CBIST

News at Rainbow 16

14

30

Our mission is to inspire the people we serve to realize their greatest potential SM

34 35 36 37 38 40 41

Genesee Treatment Center news New equipment at Farmington Hills Treatment Center Rainbow scholarship winners Congratulations to Rainbow's 2015 graduates Artists display work at brain injury conference New Professionals at Rainbow Employees of the Season

Editor Barry Marshall Associate Editor/Designer Celine DeMeyer Contributor Katlyn Steele Email questions or comments to: [email protected]

800.968.6644 www.rainbowrehab.com

Copyright September 2015—Rainbow Rehabilitation Centers, Inc. All rights reserved. Published in the United States of America. No part of this publication may be reproduced in any manner whatsoever without written permission from Rainbow Rehabilitation Centers, Inc. Contact the editor: [email protected].

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FALL 2015 • RAINBOWVISIONS | 3

• MEDICAL CORNER

TBI and Sensory Defensiveness By Samantha Fitzsimmons, OTR/L, CBIS

Rainbow Rehabilitation Centers

Sensory Defensiveness (SD) is an inappropriate and exaggerated response to a typically harmless sensation.1 Sensory defensiveness may affect as much as 15 percent of the typical population.2 In clinical populations, including developmental disorders, mental health disorders and injury, sensory defensiveness has been noted to affect 20 percent to 80 percent of clinical populations.3 For persons with sensory defensiveness, sensory stimuli can heighten arousal and elicit fight or flight behaviors. Some specific behaviors noted in persons with severe sensory defensiveness include crying, screaming, lashing out, running away, gagging, vomiting, hyperactivity and other extreme reactions.4 It is imperative that sensory defensive behaviors are understood and addressed. This article discusses the impact of sensory defensiveness in individuals with traumatic brain injuries. SENSORY INTEGRATION AND SENSORY MODULATION The ability to be aware of sensory information and to be able to adapt and respond to this information is essential for cognitive and social functioning. This is known as sensory integration or being able to effectively organize sensory information for use.5 Sensory processing refers to a person’s capacity to receive, interpret and process sensory stimuli in order for the brain to determine a behavioral response.6 Sensory modulation is using that information to produce a graded response that meets the demands of the environment or task in order to achieve optimal performance.7 When there is a mismatch between 4 | RAINBOWVISIONS • FALL 2015

the processing of the information and the response produced, this is known as a “sensory modulation disorder.” Sensory modulation disorders are a category of disorders in which an individual ineffectively regulates and organizes sensory input in order to produce behavioral responses that match the intensity of the input. Persons with sensory modulation disorder demonstrate an under or overresponsivity to sensory stimuli. Sensory defensiveness is a type of sensory modulation disorder in which behavioral reactions are negative, aversive or avoidant in response to non-noxious sensory stimuli.2 WHAT DOES SENSORY DEFENSIVENESS LOOK LIKE? Sensory defensiveness is identified by the defensive behavioral response to stimuli that an individual finds noxious. These include defensive reactions to tactile, oral tactile, auditory, visual, olfactory, gravitational, proprioceptive, and other (taste, temperature, vibration) stimuli.2 In addition to these primary defensive behaviors (stimuli), an individual may also present with “secondary issues.” These include behaviors such as aggression, emotional lability, “meltdowns,” crying, screaming, gagging, vomiting and hyperactivity.4 Secondary conditions can include anxiety, depression, sleep difficulties, gastrointestinal problems and headaches.2 Persons with traumatic brain injury (TBI) frequently experience difficulties with executive skills of planning, organization and working memory. Persistent sensory deficits occurring across multiple modalities could contribute to these deficits.8

Over sensitivity to sounds or scents are types of sensory defensiveness that can trigger a behavioral response such as crying, aggression or even vomiting.

Galvin, Froude, & Imms (2009) reported increased sensitivity in visual, auditory and touch processing. Their study sampled the parents and caregivers of 20 children with moderate to severe TBI at 12 months post injury using The Sensory Profile.6 No participants were diagnosed with ADHD, autism, Sensory Processing disorder or any other medical condition prior to injury. Children who sustained a TBI had significantly more difficulty in comparison to the normative sample on all sections of the sensory profile. Participants demonstrated behaviors consistent with low neurological thresholds with active avoidance of sensory information when overloaded and displayed behaviors consistent with heightened sensitivity to sensory stimulation compared to the normative sample.9 Individuals with ongoing sensory defensiveness learn to use coping strategies as they age in order to function in the world around them. A qualitative study described the experiences of five adults with sensory defensiveness and identified the participant’s reactions to sensory stimuli and coping strategies used in aversive environments.10

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Participants indicated the use of six coping strategies including: • Avoidance: Not placing oneself in a situation in which he or she would be exposed to stimuli. • Predictability: Organizing or controlling situations. • Mental preparation: Planning and getting ready for stimuli/experiences that are expected to be uncomfortable but unavoidable. • Talking through: Making rationalizations for the stimuli or reassuring oneself as the stimuli are occurring that they can be handled or endured. • Counteraction: Engaging in activities to reduce or negate the effect of the disturbing input or stimulation. These are frequently sensory seeking, proprioceptive activities. These frequently included sleep, rocking and using “soothing” activities that are varied by individual. • Confrontation: Identifying a problematic response to stimuli and developing a plan to overcome the negative action. WHAT CAUSES SENSORY DEFENSIVENESS? Sensory regulation, arousal and emotion involve multiple areas of the brain including the reticular, autonomic, vagal, limbic, somatosensory and cortical systems. These interlinking systems control the excitatory and inhibitory mechanisms that process sensory information and generate behavioral responses to meet the demands of the environment.11 The somatosensory system contains the evaluative pathway—a “phylogenically old” pathway which includes several tracts that travel through the anterior portion of the spinal cord through the spinothalamic tract. It carries signals for pain, temperature, tickle, itch and crude touch.

FALL 2015 • RAINBOWVISIONS | 5

• MEDICAL CORNER SENSORY DEFENSIVENESS… Evolutionarily, this tract alerted the brain that danger was near which caused the flight or fight response.2 With sensory defensiveness, there is inadequate inhibition of the evaluative system. This system stimulates the sympathetic branch of the autonomic nervous system, activating “fight or flight” and producing a cortisol stress response and heightening our arousal.2 This heightened arousal creates an increased awareness of incoming stimuli by lowering our threshold for neuronal excitability and enhancing our attention to the environment. If sensory input is deemed “too intense,” disintegration between the multiple systems involved in sensory processing occurs, followed by disorganization of attention and behavior.11 Diffuse TBI resulted in prolonged heightened sensory sensitivity to whisker stimulation in rats.12,13 These changes were not associated with detectable cell loss in the somatosensory cortex which led researchers to hypothesize that changes in the thalamus are the basis of TBI-induced sensory defensiveness. Hyper-excitability in studies has been linked to increases in excitatory potentials as well as decreases in inhibitory efficacy, supporting a theory of imbalanced excitation or inhibition of the thalamus and hippocampus.14,15

INTERVENTION TECHNIQUES The primary treatment for sensory defensiveness is use of a sensory diet. Sensory diets are routines created by the client and treatment team that provide opportunities to receive beneficial input frequently throughout the day. These opportunities are meaningful activities that provide specific sensory stimuli to elicit a desired adaptive response.16 For sensory defensiveness, a “diet” emphasizing deep pressure touch, proprioception and activation of the vestibular system is recommended. A sensory diet should be completed at regular, naturally occurring intervals throughout the day and evolve throughout the client’s lifespan to accommodate their needs, lifestyle and interests.2 Some examples of sensory diet activities include: • Use of weighted vests, blankets, heavy backpacks • Resistance and heavy work, calisthenics, weight lifting • Doing household chores that involve the whole body (laundry, vacuuming, scrubbing, washing windows) • Massage • Gum chewing, drinking thick liquids through straws, eating chewy and crunchy foods

• Joint compression activities, jumping, running, dance, yoga, climbing • Slow linear vestibular input (swinging) • Deep breathing • Use of the Wilbarger Deep Pressure and Proprioceptive Technique

Continued on page 44

About the author

Samantha Fitzsimmons, OTR/L, CBIS Occupational Therapist, Rainbow Rehabilitation Centers

Samantha has been an occupational therapist with Rainbow since August of 2012 and completed an internship with Rainbow the previous summer. Samantha holds a Master of Occupational Therapy degree from Eastern Michigan University and a bachelor’s degree in biology and psychology from Albion College. She has received specialized training in the Wilbarger Deep Pressure Therapeutic Technique for the treatment of Sensory Defensiveness and has a passion for learning and educating others about sensory integration and sensory processing. Prior to joining Rainbow, Samantha completed research on the use of integrated play group models for children with autism. Samantha is a member of the American Occupational Therapy Association. 6 | RAINBOWVISIONS • FALL 2015

References 1. Kinnealey, M., & Oliver, B. (2002). Adults with sensory defensiveness. Retrieved July 21, 2015, from http:// www.temple.edu/chp/departments/ot/OT_ SensoryDefensiveness.swf 2. Wilbarger, P.L. & Wilbarger, J.L. (2014). Sensory Defensiveness: A Comprehensive Treatment Approach. Avanti Educational Programs. Toronto, 2015. 3. Baranek, G. T. (2002). Efficacy of sensory and motor interventions for children with autism. Journal of Autism and Developmental Disorders, 32(5), 397–422 4. Johnson, M. E., & Irving, R. (2008, June). "Implications of sensory defensiveness in a college population." The American Occupational Therapy Association Sensory Integration Special Interest Section Quarterly, 31(2), 1–3. 5. Ayres, A.J. (1972a) Sensory Integration and Learning Disorders. Los Angeles. Western Psychological Services. Pg. 11 6. Dunn, W. (1999). Sensory Profile user’s manual. San Antonio, TX: Psychological Corporation. 7. Stackhouse, T. & Wilbarger, J. (1998) Occupational Therapy Perspectives of Sensory Modulation Disorders. www.SINetwork.org Accessed July 21, 2015. 8. Lew HL, Pogoda TK, Baker E, et al. (2011) Prevalence of dual sensory impairment and its association with traumatic brain injury and blast exposure in OEF/OIF veterans. Journal of Head Trauma Rehabilitation 6(6): 489-96. 9. Galvin, J. Froude, E.H. & Imms, C. (2009). Sensory processing abilities of children who have sustained traumatic brain injuries. American Journal of Occupational Therapy, 63, 701-709. 10. Kinnealey, M., Oliver, B., Wilbarger, P. (1995). A Phenomenological Study of Sensory Defensiveness in Adults. American Journal of Occupational Therapy, 49(5), 444-451. 11. Reeves, G.D. (1998). From Cells to Systems: The Neural Regulation of Emotion and Behavior. Special Interest Section Quarterly, 21(3), 1-4. 12. Hall, K.D. & Liftshitz, J. (2010). Diffuse traumatic brain injury initially attenuates and later expands activation of the rat somatosensory whisker circuit concomitant with neuroplastic responses. Brain Res, 1323, 161-173. 13. Liftshitz, J., Kelley, B.J., & Povlishock, J.T. (2007). Perisomatic thalamic axotomy after diffuse traumatic brain injury is associated with atrophy rather than cell death. Journal of Neuropathol. Exp. Neurol; 66, 218-229. 14. Witgen, B.M., Lifshitz, J., Smith, M.L., Schwarzbach, E., Liang, S.L., Grady, M.S. & Cohen, A.S. (2005). Regional hippocampal alteration associated with cognitive deficit following experimental brain injury: a systems, network and cellular evaluation. Neuroscience, 133, 1-15. 15. Almis, D.S., Johnstone, V., Yan, E. & Rajan, R. (2013). Diffuse traumatic brain injury and the sensory brain. Proceedings of the Australian Physiological Society, 44. 13-26. 16. Nackley, V.L. (2001). Sensory diet applications and environmental modifications: A winning combination. Sensory Integration Special Interest Section Quarterly, 24(2), 1-4. 17. Hayden, M.E., Moreault, A.M., LeBlanc, J. & Plenger, P.M. (2000). Reducing level of handicap in traumatic brain injury: An environmentally based model of treatment. Journal of Head Trauma Rehabilitation, 15(4), 1000-1021.

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PRIMARY SENSORY DEFENSIVE BEHAVIORS Tactile

Over-reaction to touch (generally light touch). This may result in avoiding touch from others, dislike of crowds, irritation when having hair washed, brushed, cut, avoidance of certain types of clothing (tags).

Oral Tactile

Avoidance of certain food textures (can be generalized to all foods of a certain color i.e., all green foods “feel” like this), things in and around the mouth, teeth brushing, irritation of activities involving use of the mouth in general (i.e., humming). Patterns of avoidance are unique to each individual. A few individuals will seek out calming sensations such as chewing, sucking and biting.

Auditory Symptoms

Oversensitivity to certain sounds. Vacuum cleaners, fire alarms, noises in the 3000 Hz range typically trigger a response.

Gravitational Insecurity

Irrational fear of changes in head position. Fearful of having feet leave the ground, or having their head tipped backwards or downward. Fearful of certain movement experiences, ie., carnival rides, riding bicycles, walking down stairs, climbing on playground equipment.

Visual Symptoms

Over sensitivity to light, visual distractibility, gaze avoidance, strong color preferences

Proprioceptive Symptoms

Aversion to input into the joints either by compression or traction. Some individuals avoid putting weight onto their joints when standing, pushing, pulling and jumping. Young children may avoid walking or crawling. I.e., “Hurts to open a heavy door."

Smell Aversion

Sensitivity to non-noxious environmental odors. Very individualized.

Other sensory areas Taste, temperature, vibration

FALL 2015 • RAINBOWVISIONS | 7

• CLINICAL NEWS

"Guidelines for the Rehabilitation and Chronic Disease Management of Adults with Moderate to Severe TBI"

TheTBI GUIDELINES PROJECT What is it and why is it needed? By Heidi Reyst, Ph.D., CBIST

Rainbow Rehabilitation Centers

“Individuals who sustain traumatic brain injuries rarely have access to rehabilitation of sufficient timing, scope, duration, and intensity that would allow them to recover to the maximum extent possible. When a person’s care is delayed, discontinued, or denied altogether, the result is often increased re-hospitalization rates and greater levels of disability. This creates a cycle of joblessness, homelessness, and dependence on public programs.” Susan Connors, President and CEO of Brain Injury Association of America

Project Overview In June of 2014, the Brian Injury Association of America (BIAA) and the Brain Injury Research Center at the Icahn School of Medicine at Mount Sinai announced to the public they were working collectively on a project to develop clinical practice guidelines for individuals with moderate to severe traumatic brain injury (TBI). At that time they were looking for clinicians and researchers who were experienced working in the field of post-acute rehabilitation to assist with this endeavor. Over 50 professionals from around the country were selected to participate in this historic project. The project is headed by a who’s who of brain injury professionals, including the project leaders and panel chairs listed on the right. A large component of a project of this nature is a transient process with public input. Visit www.biausa.org/tbiguidelines/ 8 | RAINBOWVISIONS • FALL 2015

Principal Investigators Wayne Gordon, Ph.D. Marcel Dijkers Ph.D . Icahn School of Medicine at Mount Sinai Project Officer Susan Connors Brain Injury Association of America Behavior Panel Chair Jennifer Bogner, Ph.D., ABPP Ohio State University Cognitive Panel Chair Keith Cicerone, Ph.D. JFK Johnson Rehabilitation Institute New Jersey Neuroscience Institute Functional Panel Chair Steven Flanagan, MD NYU Langone Medical Center Medical Panel Chair Kristin Dams-O’Connor, Ph.D. Icahn School of Medicine at Mount Sinai Participation/Vocational Panel Chair Stephanie-Kolakowsky-Hayner Ph.D., CBIST Stanford University

Number/100,000  people  

Figure   nnual  TBI  TBI   Incidence   Figure1.   1.  A Annual Incidence and AnnualCCancer vs   Annual   ancer  Incidence Incidence  

tbi-rehabilitation-guidelines for an overview and updates. The project itself is a three-year grant awarded by the BIAA to the Brain Injury Research Center at the Icahn School of Medicine at Mount Sinai. The principal focus is to develop guidelines for the ‘Rehabilitation and Disease Management of Adults with Moderate to Severe Traumatic Brain Injury.’ The objectives for the project are to: 1 1. Identify and fully describe the continuum of care available following TBI, including U.S., international and military model descriptions and analyses; 2. Develop evidence-based guidelines describing what diagnostic, treatment, preventative and other services should be provided to adults with moderate to severe TBI, in what setting(s) and/or phases after injury onset. These guidelines will be based on a review of the scientific literature and (where the literature is missing or significantly lacking in quality) on the consensus opinion of experts. 3. Disseminate these guidelines to stakeholders, including persons with TBI and their families, providers of medical, social, psychological and vocational services, payers, and policymakers. Before providing the project details and processes, it is important to clearly understand the need for having guidelines for the treatment of moderate to severe TBI. By way of note, this is one of three articles related to the concept of clinical practice guidelines. On page 16, the article entitled Evidence-Based Medicine: A Revolution in Healthcare outlines the movement away from the use of tradition and WWW.RAINBOWREHAB.COM

1000  

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800   600  

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All  Cancers   Combined  

clinical acumen alone in the decision making process of patient care, toward the inclusion of evidence of efficacy in that process. The second companion article on page 24, titled Evidence-Based Guidelines: The Development and Dissemination Process, provides an overview of the rigorous methodology to be used in the guideline development process. Those articles set the groundwork for understanding the need for evidence and how guidelines are developed, while this article focuses on why guidelines for TBI rehabilitation are vital.

The Need for Guidelines: TBI is a serious problem

Annually, 2.5 million people incur a traumatic brain injury in the United States.2 This equates to more than 6,800 individuals daily. The annual incidence rate of TBI from 2007 to 2010 was 823 per every 100,000 individuals (Figure 1, above).2 The annual incidence of all cancers combined from 2007 to 2011 was 465 per 100,000.3 If you extrapolate the rate per 100,000 for all cancers combined, 3,786 individuals are diagnosed on a daily basis. TBI clearly represents a national issue worthy of the thought, effort and funding that cancer so rightly is afforded. In addition, as shown in Figure 2, p.10, the rates of TBI are increasing. In 2001, the overall incidence rate was 521/100,000 and by 2010 that rate increased to 823/100,000. As the number at the bottom of Figure 2 shows in orange, the incidence rates for hospitalizations has increased, but not nearly to the degree that emergency department visits have in the last 10 years. In fact, death rates have remained largely the same leaving emergency department visits as the reason for the sharp rise. FALL 2015 • RAINBOWVISIONS | 9

• CLINICAL NEWS TBI GUIDELINES… Figure  2.    Rates  of  TBI  Years  2001-­‐2010   900  

791.9  

Numbe/100,000  people  

800  

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400   300   200   82.7   100   18.5   0   2001  

ED  Visits  

HospitalizaJons  

TBI has substantial financial implications

In the year 2000, over 1.3 million people incurred a TBI. The total estimated cost associated with those 1.3 million injuries was $206 billion (in 2006 dollars).4 Fatal injuries comprised $135 billion of those costs. Non-fatal injuries accounted for $71 billion in medical costs and lost productivity. Of those non-fatal injuries $54 billion was for those who required hospitalizations, and $17 billion was for those who did not. This accounted for 15 percent of all injury costs in the US that year, as well as one percent of all medical spending.4 The costs associated with TBI care are clearly problematic, and are part of the larger problem of rising healthcare costs in the U.S. By 2017, it is estimated that the overall health care costs will reach 19.5% of the total GDP.5 With nearly two-fold the injuries in 2010 as compared to 2001, the financial aspect of TBI is becoming increasingly more significant.

TBI has substantial social impacts

While the financial impacts are sizable, those may well be eclipsed by the individual social impacts TBI brings. Though the data is fairly limited, it is estimated that 3.2 million people are living with a disability as the result of a TBI.6 TBI can leave an individual with impairments in neuropsychological, psychological, cognitive, physical, behavioral and social domains. The latter two categories alone highlight the social impact of TBI, both on the 10 | RAINBOWVISIONS • FALL 2015

Deaths  

Total  

individual living with the brain injury as well as their family/support network. Brain injury has often been characterized as isolating. For the individual living with a brain injury, there may be many losses as a result: loss of who they were prior to their injury, loss of social opportunities, loss of independence; loss of roles and the list goes on. For families, the list may be nearly duplicative, especially if they have become the primary caregivers for the injured person. Collectively, these losses, coupled with impairments in a variety of life domains, can result in decreased self-efficacy, fewer social contacts, and reduced life satisfaction to name a few. To summarize thus far, rates of TBI are rising, the financial costs of TBI are significant and growing, and the social costs are even more consequential. What hasn’t been addressed yet, the elephant in the room of sorts, is the ubiquitous lack of access desperately needed for care and treatment after brain injury, particularly for those with the moderate to severe variety. Lack of access often means lack of funding. Lack of funding is seen in two different arenas—at the federal level in terms of the amount of money dedicated to research diagnosis, prevention and treatment. The other area where funding is lacking is at the level of the patient, where the rubber meets the road so to speak.

Lack of access to appropriate care

At the individual patient level, there are significant barriers in the way to successful access of care and treatment.

Putting this discussion in the context of the existing continuum of care will help to point out the deficiencies in care access. The top of Figure 3 outlines the continuum of care in brain injury.7 The left side of the continuum encompasses the acute (or hospital-based) side, while the right represents the post-acute (or non-hospital) side of the continuum. Not all individuals will need to access the entire continuum, nor does the continuum necessarily represent a linear path. But what the continuum does represent is the chance for people, after their lives changed in an instant, to reclaim themselves and to put the pieces back together to the greatest degree that they can. For those who need the continuum to start the rebuilding process after injury, the barriers to actually accessing it are substantial and pervasive. Two of these barriers include the high cost of the specialized services needed at both the acute and post-acute ends of the spectrum, as well as the

lack of available, adequate coverage to pay for those costs. On the lower half of Figure 3, the bird’s eye view of brain injury coverage is shown, and highlights the financial barriers to accessing the full continuum. The red area of the bars indicate, on the whole, inadequate coverage for those services in the continuum. The purple indicates a level of coverage that exceeds the “red” coverage. However, even within the purple areas, the level of coverage can be widely varied. An auto policy in one state may have a $50,000 limit on medical benefits, while another policy in another state may not have an arbitrary set limit. What this clearly highlights is insufficient access overall, and dismal levels of access to the post-acute side of the continuum. Coverage itself is just one aspect of the access equation. Coverage does not necessarily equate to appropriate access. In the acute, medical management phase of treatment, the average length of stay (LOS) over time has steadily

Figure 3. Continuum of Care (adapted from the Rocky Mountain Regional Brain Injury Systems) ACUTE CARE

Emergency evaluation

POST-ACUTE CARE Home with family (with outpatient/day treatment or home and community-based services)

Intensive care unit

Emergency department

Specialty neurotrauma polytrauma

Comprehensive integrated inpatient brain injury rehabilitation hospital/skilled nursing facility

Long term care

Post-acute residential transitional rehabilitation

Sub-acute rehabilitation

Independent living Supported living program group homes Supported living program apartment Home with family and some services Nursing care facility

PUBLIC SECTOR FUNDING—MEDICARE PUBLIC SECTOR FUNDING—MEDICAID PRIVATE SECTOR FUNDING—HEALTH INSURANCE PRIVATE SECTOR FUNDING—LIABILITY, WORKER’S COMPENSATION, AUTOMOBILE INSURANCE)

LEGEND Some Coverage

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Inadequate Coverage

FALL 2015 • RAINBOWVISIONS | 11

• CLINICAL NEWS TBI GUIDELINES… Figure 4. Length of Stay Data for Acute Care and Acute Rehabilitation Years 1990-1996 and Correspending FIM Total Changes Scores 2000-2008 60

50

47.7

As LOS declined over time, FIM change scores declined or remained stagnant, highlighting that fewer days in acute rehabilitation did not correspond to better function at discharge.

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Over time, LOS for both acute care and inpatient rehabilitation reduced drastically. Some reduction can be attributed to better treatment protocols, however, these reductions are viewed as cost-cutting measures.

0

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1991 †

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Acute Care

Figure  5.    Length  of  Stay  Data  -­‐   Acute  InpaDent  RehabilitaDon     (n  =  13,700)10   39%  

40%   35%   30%  

29%  

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7%  

10%  

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5%   0%  

1-­‐9  days   10-­‐19   days  

20-­‐29   days  

30-­‐39   40+  days   days  

12 | RAINBOWVISIONS • FALL 2015

1996 †

Inpatient Rehabilitation

decreased from 27 days in 1990 to 15.8 days in 1996 as shown in Figure 4 (blue line).8 Likewise, data for acute inpatient rehabilitation (orange line) shows a large decline from 47.7 days in 1990 to 29.5 days in 1996,8 followed by a steady, though less pronounced decline from 2000-2008.9 When

45%  

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2000 ‡

2001 ‡

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FIM Total Change

comparing the inpatient rehabilitation LOS (orange line)9 and FIM® Total Change data (green line)10 from 2000-2008, it is apparent that reduction in LOS did not correspond with concomitant gains in FIM® change scores. In fact, as LOS decreased, so too did FIM® change scores, indicating patients had fewer days in rehabilitation and left with less function, on average. In another study which measured LOS in acute rehabilitation settings (from Oct. 2001-Dec. 2007), 67.5 percent of patients were discharged within 19 days of admittance (Figure 5, the red bars).11 This study set out to examine long-term outcomes post injury and found that 20.6 percent of the 13,700 patients had died within five years of their injury. For the patients who remained alive at five years post injury, 12 percent were institutionalized, 50 percent were

Linear ( Inpatient Rehabilitation)

re-hospitalized at least once, 57 percent were moderately or severely disabled, and 39 percent lost gains made in the first two years after their injury. The takeaway from this data is that patients are discharged "quicker and sicker," and mortality and morbidity declined at five years post injury, indicating poorer outcomes over time. When examining LOS from a global perspective, shorter lengths of stay do not appear to benefit the patient. While some of the shorter LOS is attributable to advancements in medical care related to TBI, the FIM® data clearly points to some level of deleterious effect. If shorter stays were beneficial, we should expect equal or greater gains on average over time. Likewise, if shorter acute phase LOS was followed by intensive treatment at a post-acute level, acute LOS may well be a moot point. But what does the data tell us?

Discharge Disposition

In a recent study with a sample of 2,130 patients who received treatment in specialized brain injury inpatient rehabilitation settings (average LOS = 26.5 days), 84 percent discharged to a private home, 2 percent went to an acute care hospital, and 14 percent went to other post-acute settings (Figure 6).9 Using acute care LOS data from 1996 as a conservative example, these samples of moderate to severe TBI patients spent, on average, 42.3 days in acute settings (26.5 days from above + 15.8 days from Figure 4). Discharge to home may mean outpatient or day treatment services, community-based services, or, quite likely, no or inadequate services secondary to funding limitations. By way of example, Medicare does not cover long-term care, state Medicaid Waivers typically cover short-term stays, health insurance policies typically have limited numbers of treatment sessions, (and not all cover cognitive rehabilitation), and the majority of property and liability coverages have limitations. Figure 6. Discharge disposition from inpatient rehabilitation. Other Post-Acute Setting, 14% Acute Care, 2%

Home, 84%

Why is this important?

In the past 40 years or so, a variety of improvements have led to a significant decrease in the mortality rate (the proportion of deaths to population) due to TBI. As Figure 7 shows, the greatest reductions in mortality WWW.RAINBOWREHAB.COM

Figure   7.    Death   Rate  Reductions Reduc@ons  by  Decade     Figure 7. Death Rate by Decade 10%  

9.00%  

9%  

60  

8%  

50  

7%   6%  

3%  

30  

3.00%  

2%  

22  

20  

1%  

-­‐0.03%  

0%   -­‐1%  

49  

40  

5%   4%  

Figure Mortality Rate Figure  8. 7.  Higher Higher  M ortality  Rate   Likelihood Injury Likelihood  aafter 6er  OOne ne  YYear ear  PPost ost  Injury   Versus General Versus  the the  G eneral  PPublic ublic  

1885-­‐1930  

1930-­‐1970  

-­‐0.08%  

1970-­‐1990  

1990  to  Present  

(percentage by decade) occurred from 1970-1990 (reduction of 9 percent per decade),12 followed by a relatively stable death rate around 17 percent.2 Starting in the 1970s, greater numbers of individuals survived their injuries, with resultant, significant morbidity (the incidence of disease). This morbidity is now recognized for what it is—a chronic disease process.13 Shedding the “injury” moniker in favor of “chronic disease” paints a clearer picture of TBI, particularly that of moderate and severe. Because many young people are seriously affected by TBI, more and more people will experience decades-long living with the effects. Because the brain is the control center for our volitional as well as autonomic functions, when it is severely injured, the impact to the rest of our function and our health can also be severely impacted. Research has shown, time and again, that TBI impacts our health directly and indirectly in myriad ways. A number of years ago, Brent Masel authored a BIAA white paper titled Conceptualizing Brain Injury as a Chronic Disease.13 He outlined the available research which showed that people with TBI had differential rates of co-morbid conditions than those of the general population. In doing so, the terms “disease-causative” and “disease-accelerative” became part of the brain injury vernacular. What these terms point to is that, if not for a brain

10   0  

2.5  

3  

4  

Diges0ve   Suicide   Pneumonia     Seizures   Aspira0on   condi0ons   Pneumonia  

injury, these patients would otherwise not have incurred certain health conditions, or, given a propensity for a health condition, the brain injury may have accelerated that condition. Overall, TBI appears to clearly impact both mortality and morbidity. In terms of mortality, TBI reduces life expectancy by four years, and increases the likelihood of death by 1.5 times as compared to similar cohorts (same age, sex and race).14 Figure 8 reports causes of higher mortality and their increased likelihood for TBI patients one year post injury versus the general population. For example, after one year post-injury an individual is 49 times more likely to die of aspiration pneumonia than a similar individual from the general population. TBI also impacts morbidity. There are a variety of conditions brought about by TBI, which in the absence of brain injury would otherwise be relatively unlikely to occur (Figure 9). Neurological (epilepsy), Continued on page 42 Figure 9. Morbidity Rates post TBI.14

Epilepsy 1.5-17x Visual Disturbance 30-50% Disturbed Sleep 45% Hypotuitarianism 30% Urinary Incontinence 5% (1 yr post) Depression 18-61% Sexual Dysfunction 40-50% Heterotopic Ossification 10-20% FALL 2015 • RAINBOWVISIONS | 13

• PERSONAL PERSPECTIVE

A life of Purpose a By Katlyn Steele

Rainbow Rehabilitation Centers Vocational Program participant

Nerico poses with a few of the donation canisters that he helped to decorate.

14 | RAINBOWVISIONS • FALL 2015

and Service to others MEET NERICO

Nerico Johnson is an ambitious man who has always favored keeping busy. His activity within Rainbow Rehabilitation is not only diverse, but also very abundant. Having worked for Inkster Parks and Recreation in the past, Nerico seems at ease when talking to small groups of people whether he’s the voice commanding attention while teaching a lesson, guiding a tour, or even if he’s following through with jobs that have been allocated to him. These life skills allow him to be involved in a handful of jobs at Rainbow’s Vocational Rehabilitation Center (VRC) as well as other affiliated facilities. An ordinary workday for Nerico might consist of tending to the grounds at Talladay farms or assisting Job Coach Kevin Kalis with delivering supplies to Rainbow facilities. His most recent charitable endeavors have made a large impact on deserving local businesses.

PAYING IT FORWARD

PHOTO: KATLYN STEELE

Early last year, Rainbow started a "Pay It Forward" program to help support local organizations whose work benefits the local community and whose philosophy is guided by the hope for change. Nerico was one of the clients who worked with Vocational Manager Don Daniels on the Pay It Forward project. The first business they collaborated with was Starry Skies, a company in Ann Arbor, MI whose purpose is to divert the equine population from the slaughter pipeline and to rescue, rehabilitate and adopt available horses. Nerico called around to different veterinary establishments to ask if he could leave a donation jar at their place of business to raise money for Starry Skies. After months of collecting money, Nerico raised $1,000 to support Starry Skies and their efforts.

GAINING CONFIDENCE

Once the expectations of the group were exceeded with Starry Skies, Nerico expressed his interest in helping homeless children. His big heart and simple request sent Don on a search for a fitting company to work with. Through Don’s search, he came across SOS Community Services. SOS Community Services is a community-based non-profit in Washtenaw County that is dedicated to preventing and ending family homelessness through partnerships with caring individuals, local businesses and organizations, social service agencies and professionals. This new collaboration will give Nerico the chance to place donation jars at businesses that are aimed towards helping children such as pediatric doctor's offices in hopes to raise money to give to SOS for the services they provide. In addition to the donation jars, Nerico wants to see about creating care packages for homeless individuals. He’s hoping to collaborate with local schools or churches to collect general hygiene products, clothing, and food for children who may not have the means to aquire them.

A LOOK BACK

Twenty years ago when Nerico worked at the parks and recreation program, he was teaching children many basic life skills—skills that he never thought he, himself would ever have to relearn. He taught a variety of lessons, like how to tie a good knot, how to be a friend, how to work as a team and other skills to help fulfill the social, educational and recreational needs of others in his community. Walking around town one day, Nerico was unfortunately hit by a car which resulted in a traumatic brain injury. The accident impacted his ability to live independently and recall short-term memories, however, his long-term Continued on page 35

WWW.RAINBOWREHAB.COM

FALL 2015 • RAINBOWVISIONS | 15

• CLINICAL NEWS

EVIDENCE-BASED MEDICINE: By Heidi Reyst, Ph.D., CBIST

Rainbow Rehabilitation Centers

Good doctors use both individual clinical expertise and the best available external evidence and neither alone is enough.

16 | RAINBOWVISIONS • FALL 2015

A revolution in healthcare The Problem

In 2004, Dr. David Cutler provided America’s healthcare system a checkup. In his book, Your Money or Your Life: Strong Medicine for America’s Healthcare System, Cutler painted a picture of a “patient” in distress, in this case the healthcare system itself. While his examination was metaphorical, there was nothing figurative about the results. The patient’s symptoms included high costs, a lack of access to care and uneven or widely varied quality of care or clinical practices.1 He called these the “holy trinity of health reform,” in a time when there was little promise for any chance of reform.2 Fast forward to 2015, where healthcare costs continue to rise. Health expenditure per capita was $4,791 in 2000, and $8,745 in 2012,3 and healthcare’s share of the GDP is expected to rise from 16 percent in 2006 to 19.5 percent by 2017.4 The continual rise in the cost of healthcare is now coupled with fewer individuals who are uninsured.5 Taking the 30,000 foot view on this might yield the following: I may be lucky enough to have access to care by having healthcare insurance, and I may be able to pay the costs of that care, but now will I have to worry about whether I will receive top-notch care? In discussing this issue of variable quality of care, Dr. Cutler noted the usual suspect one would worry about, namely errors, which is beyond the scope of this article. However, he noted other concerns such as too much care, too little care, or higher spending on the same healthcare with no discernible change in mortality or patient quality of life.1 In a very well-articulated argument, he noted that a significant way to improve healthcare based on these three elements would be to focus on increasing the value we get for the dollars we spend. The question begs how, exactly, do we go about that?

The Answer?

One answer to that question comes in the form of Evidence-Based Medicine, or EBM. The core aspect of EBM is that practitioners will utilize the best available evidence, in conjunction with clinical expertise, when determining treatment options for a patient. The history of EBM is a relatively short one, yet one that ensued at an incredibly fast pace.

The Origins of EBM

EBM’s “modern” origins date back to the late ‘60s and early ‘70s. Dr. David Eddy, an influential force in the burgeoning field noted that it was the existing environment of medicine that created the need for the movement towards the idea of “evidence based”.6 He described this environment as follows: Up until about 40 years ago, medical decisions were doing very well on their own, or so people thought. The complacency was based on a fundamental assumption that through the rigors of medical education, followed by continuing education, journals, individual experiences, and exposure to colleagues, each physician always thought the right thoughts and did the right things. The idea was that when a physician faced a patient, by some fundamentally human process called the “art of medicine” or “clinical judgment,” the physician would synthesize all of the important information about the patient, relevant research, and experiences with previous patients to determine the best course of action. “Medical decision making” as a field worthy of study did not exist. Analytical methods and mathematical models were limited to research projects.

WWW.RAINBOWREHAB.COM

FALL 2015 • RAINBOWVISIONS | 17

• CLINICAL NEWS EVIDENCE-BASED MEDICINE… In the context of the late ‘60s and early ‘70s, in which clinical judgement was firmly entrenched in the status quo, one can only imagine how difficult it would be to bring about a significant change in culture. Hindsight being what it is, clearly there were game-changing insights, or “aha” moments, and a fair amount of elbow grease that actually resulted in the culture moving. What, then, spurred this movement? Dr. Eddy pointed out two such assumptions that moved the world of medicine towards a more evidence-based paradigm. The first assumption found to be critically flawed was the premise of how clinical judgments were made, namely those based on the rigors of medical training, continuing education and traThe art of medicine: dition. The second faulty the determination of assumption was the idea treatments based on that what was happening opinion, tradition, and in current clinical practice experience, without the correlated with research assistance of medical available to inform clinical science. practices.

Evidence-Based Medicine Timeline Early 1960s Suzanne & Robert Fletcher They highlighted that physician determination for what treatments to provide were based on opinion, tradition, and experience, (i.e., the art of medicine) without the assistance of medical science.

Mid to Late 1960s Alvan Feinstein Brought to light some of the inherent biases in how clinical judgements via the ‘art of medicine’ were made. Published a new way to address clinical judgements which he called “Clinical Epidemiology.”

EBM—The Rise of Clinical Epidemiology

The game-changers, as I will call them, came from a variety of places like Canada, Great Britain, and the United States, as well as from a variety of disciplines like medicine, epidemiology, public health, mathematics, and statistics. Much of what the game-changers accomplished was to fundamentally discredit the prevailing assumptions about “the art of medicine.” More on the origins of EBM can be found in the sidebar at right.

EBM—The Modern Era

The term ‘evidence-based’ was coined and used by Dr. Eddy in the latter half of the 1980s.7 He first published the term in a 1990 Journal of the American Medical Association article titled “Practice policies: where do they come from?” Two years later, the term ‘evidence-based medicine’ was published in JAMA by The Evidence-Based Medicine Working Group headed by Gordon Guyatt, with his colleagues from McMaster University, along with a multinational team of experts from Britain, the United States and elsewhere. Though seemingly indistinguishable from one another the two terms came from distinctly different contexts. For Eddy, use of the term was in relation to evidence-based guidelines policy.7 Guyatt and colleagues’ use of the term stemmed from a much different frame of reference—that of “a new approach to teaching the practice of medicine”.8 18 | RAINBOWVISIONS • FALL 2015

Mid to Late 1960s Kerr White Helped to bridge a large gap between medicine and public health, and was a strong supporter of clinical epidemiology departments in medical schools. The First Department of Clinical Epidemiology and Biostatistics opened at McMaster University.

Early 1970s Archie Cochrane Strongly criticized the state of medicine and the effectiveness of treatments, and staunchly supported the used of randomized controlled trials to determine the effectiveness of specific medical treatments.

1970s Numerous publications highlighted that treatments which were completed by physicians were not appropriate.



Table 1. The key differences between the EBID and EBG branches of EBM are outlined in (Eddy, 2005).

EBID

EBG

Main Focus

Implicit, personal methods; Use of practitioner knowledge and the best available evidence

Generic guidelines and policies to address the needs of groups of people

Key Players

Individual practitioners

Multi-disciplinary Teams

Direct, via diagnosis and treatment recommendations

Indirect, by influencing healthcare practitioners

Effect on Patient

The latter term, along with the seminal work of the McMaster University program, helped propel the concepts of evidence-based medicine forward and distinctly brought about the modern era of EBM. Indeed, the most widely referenced definition of EBM came directly from that group in 1996:9 Evidence based medicine is the conscientious, explicit and judicious use of the current best evidence in making decisions about the care of individual patients. Though widely referenced, it does not tell the entire story of EBM—as essentially two distinct branches of EBM developed out of this. Eddy himself classified the two models. One model, which he termed Evidence-Based Individual Decision Making (EBID), was championed by Sackett, Guyatt and the McMaster group. The other model Eddy termed Evidence-Based Guidelines (EBG) and focused more on the development of guidelines. The importance of these two models lies in their distinction of how they affect the patient. The EBG model will impact the patient indirectly via the development of guidelines that are designed to impact groups of people, whereas the EBID model affects the patient directly by providing medical science to clinical judgment. Table 1, outlines the key differences in the models.

EBID Model

When EBM was first beginning to be conceptualized, it was presented as a stark contrast to the “art of medicine.”10 Like any new concept, it evolved over time. To a degree, it has come full circle, as Sackett, Rosenberg, Gray, Haynes and Richardson9 noted: “Good doctors use both individual clinical expertise and the best available external evidence, and neither alone is enough. Without clinical expertise, practice risks becoming tyrannized by evidence, for even excellent external evidence may be inapplicable to or inappropriate to an individual patient.” This idea has been represented in a Clinical Decision Model, shown in Figure 1.11, 12, 13 The model incorporates three critical aspects of the evidence-based clinical decision-making model. One aspect of the model, Patient Values, takes into account

WWW.RAINBOWREHAB.COM

the patient’s preferences, circumstances and values.11, 12, 13 Examples of this include the level of risk the patient is willing to accept, their ability to follow treatment recommendations, cultural factors, insurance issues, personal values and a host of other considerations.11 A second aspect of the model pertains to the Clinical Circumstances with which the patient presents. Examples of this include symptoms, diagnoses, accessibility to care and other considerations which may be central to the decision making process.11 The third aspect is Research Evidence. This is the aspect which takes medical decision making from the “art of medicine” to “evidence-based.” In particular, research evidence includes “systematic observations from the laboratory, preliminary pathophysiological studies in humans and more advanced applied clinical research, such as randomized controlled trials with outcomes that are immediately important to patients.”11 It builds on the aspects that have always guided clinical decision making, namely, patient values and clinical circumstances. Collectively, all three components impact clinical judgment, with the goal being to assist practitioners to make the best decision for care, given all the relevant information. The Clinical Decision Model also places importance on all the aspects that go into the practitioner having the information they need to make the best decision for each patient. Beyond basic skills and experience, the ability to Figure 1. Clinical Decision Model

CLINICAL CIRCUMSTANCES

CLINICAL EXPERTISE

PATIENT VALUES

RESEARCH EVIDENCE

FALL 2015 • RAINBOWVISIONS | 19

• CLINICAL NEWS EVIDENCE-BASED MEDICINE… keep up with growing evidence and expanding requirements that impact skills is tremendous. In fact, Archie Cochrane noted this fact decades ago. He recognized that there is no utility in clinical trials if the information contained in them is inaccessible to physicians. In an article published in 2010, it noted there were 75 clinical trials and 11 systematic reviews published in the medical literature on a daily basis, or more than 30,000 per year!14 In the age of managed care, the time needed to keep up to date is untenable. What then is the answer to getting the right information into physician’s hands? The likely answer is Eddy’s6 second EBM Model: evidenced-based guidelines, or EBG – Model.

EBG – Model

The starting point for the discussion of evidence-based guidelines has to be with the word “evidence.” Without evidence, medical decision making falls back solely to the “art of medicine.” Early on, the randomized controlled trial (RCT) was considered the gold standard of evidence obtainment. The problem with RCTs lies in the reality that they may not be the definitive answer, nor are they practical to conduct for every diagnosis or treatment. If RCT is impractical in certain situations, or (gasp!) if more than one RCT provides contradictory evidence, where do practitioners turn? The key to establishing the best available evidence is to complete a systematic review of all available evidence—the great, the good, the bad and the ugly. Once a systematic review is conducted, evidence-based guidelines can be developed. The key to the development is ensuring robust methodology is explicitly established and explicitly followed.

In addition, it is crucial that the process be transparent and free from bias. This ensures that the users of the final guidelines have knowledge of how the guidelines came about, understand the strength of evidence that was used to inform the guidelines and that the process was free of conflicts of interest. The companion article to this one titled ‘Evidence-Based Guidelines: Development and Dissemination’ reviews guideline development, and delineates the systematic reviews process. At the beginning of this article, three problems were identified in healthcare today—rising costs, lack of access to care and uneven or varied quality of care. One way to combat this problem is to focus on obtaining a better value for the healthcare dollars we spend. The question loomed—how, exactly do we do that? The initial answer was a global one. Improve clinical decision making through the incorporation of evidence-based medicine. Or, more specifically, enhance clinical judgment by bringing direct evidence of treatment efficacy to bear on the patient. The more succinct answer is to use the principles of evidence-based medicine (which emphasize examining the evidence) to create evidence-based guidelines (which have an explicit methodology for review of all available evidence). When the latter is done, for a given treatment of a given diagnosis, variability of treatment for the patient is reduced. When successfully reduced, we should no longer see wide-ranging treatments that ultimately increase the cost of care, yet provide no better (or even worse) efficacy in terms or mortality or morbidity. ❚

About the author

Heidi Reyst, Ph.D., CBIST

Vice President of Clinical Administration Dr. Reyst holds a Bachelor of Arts degree from Kalamazoo College, in Kalamazoo, MI and a Ph.D. in Applied Social Psychology from The George Washington University in Washington, D.C. She is a Certified Brain Injury Specialist Trainer, Academy of Certified Brain Injury Specialists, and has worked in various capacities within the field of brain injury rehabilitation since 1991. Dr. Reyst is currently a member of the board of governors for the Academy of Certified Brain Injury Specialists, and is the Vice Chairperson for Information Management. Dr. Reyst serves on the Participation/Vocational Panel for the "Guidelines for the Rehabilitation and Chronic Disease Management of Adults with Moderate to Severe TBI."

20 | RAINBOWVISIONS • FALL 2015

References—Evidence-Based Medicine 1. Cutler D. Your money or your life: strong medicine for America’s health care system. New York, NY. Oxford University Press. 2004. 2. Cutler D. Your money or your life: strong medicine for America’s health care system. http://www.chrp.org/pdf/ Cutler_041405.pdf. Power Point presentation accessed 9/5/2015. 3. OECD Health Statistics 2014. How does the United States Compare? http://www.oecd.org/unitedstates/Briefing-NoteUNITED-STATES-2014.pdf. Accessed July 28, 2015. 4. Keehan S, Sisko A, Truffer C, Cowan P, Clemens M. Health Spending Projections Through 2017: The Baby-Boom Generation Is Coming To Medicare. Health Affairs. 2008; 27(2): W145-W155. 5. Majerol M, Newkirk V, Garfield R. The Uninsured: A Primer. Key facts about health insurance and the uninsured in America. http://files.kff.org/attachment/the-uninsured-a-primer-key-facts-about-health-insurance-and-the-uninsuredin-america-primer. Accessed 9/5/2015. 6. Eddy D. Evidence-Based Medicine: A Unified Approach. Health Affairs. 2005; 24(1): 8-17. 7. Eddy D. History of Medicine. The Origins of Evidence-Based Medicine – A Personal Perspective. Virtual Mentor. 2011; 13: 55-60. 8. The Evidence-Based Working Group. Evidence-Based Medicine: As New Approach to Teaching the Practice of Medicine. JAMA. 1992; 268 (17): 2420-2425. 9. Sackett D, Rosenberg W, Gray M, Haynes B, Richardson W. Evidence-Based Medicine: What it is and what it isn’t. BMJ. 1996; 312: 71-72. 10. Timmermans S, Mauck A. The Promises and Pitfalls of Evidence-Based Medicine. Health Affairs. 2005; 24(1): 18-28. 11. Haynes B, Devereaux P, Guyatt G. Clinical Expertise in the Era of Evidence Based Medicine and Patient Choice. EBM Notebook. 2002; 38(7): 36-38. 12. Shah H, Chung K. Archie Cochrane and his Vision for Evidence Based Medicine. Plast Reconstr Surg. 2009; 124(3): 982988. 13. Bhandari M, Giannoudis, P. Evidence-Based Medicine: What it is and what it is not. Injury, Int. J. Care Injured. 2006; 37: 302-306. 14. Bastian H, Glasziou P, Chalmers I. Seventy-Five Trials and Eleven Systematic Reviews a Day: How Will We Ever Keep Up? PLOS Medicine. 2010; 7 (9): 1-6.

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FALL 2015 • RAINBOWVISIONS | 21

• 2015 CONFERENCES & EVENTS

September September 19-20

International Symposium on Life Care Planning

DoubleTree Hilton Paradise Valley, Scottsdale, AZ

[email protected]

September 28-29

Michigan Assoc. for Justice Auto No-Fault Seminar

Westin Hotel—Southfield, MI

www.michiganjustice.org

Sept. 30-Oct. 3

ARN 40th Annual Educational Conference

Hyatt Regency—New Orleans, LA

www.rehabnurse.org

October 12

ACMA Great Lakes Chapter Conference

Suburban Collection Showplace—Novi, MI

www.acmaweb.org

October 13

CMSA Vendor Palooza/CM Appreciation

Burton Manor—Livonia, MI

www.cmsadetroit.org

October 16

Michigan Guardianship Assoc. Conference

McCalmy Plaza Hotel—Battle Creek, MI

www.michiganguardianship.org

October 18-20

SIIA National Educational Conference & Expo

Marriott Marquis—Washington, DC

www.ciia.org

October 22

Capitol Area Case Mgmt Vendor Fair

University Club of MSU— Lansing, MI

www.cacmc.org

October 24

CPAN Night at the Museum Gala

The Michigan Historical Museum—Lansing, MI

www.cpan.us

October 25-30

ACRM Annual Conference

Hilton Anatole—Dallas, TX

www.ACRM.org

October 26-29

State of the States Head Injury Conf. (NASHIA)

The Curtis Hotel—Denver, CO

www.nashia.org

November 7

BIAMI Quality of Life Conference

The Inn at St. Johns—Plymouth, MI

www.biami.org

November 10

MSU Case Management Conference

Kellogg Center—East Lansing, MI

www.nursing.msu.edu

November 11-12

National Worker’s Comp & Disability Conference

Mandalay Bay—Las Vegas, NV

www.wcconference.com

December 5

St. Joseph Mercy Hospital Holiday Ball

EMU Convocation Center—Ypsilanti, MI

[email protected]

October

November December

2016 Preview March 2-5

IBIA 11th World Congress on Brain Injury

The Hague World Forum—The Netherlands

www.internationalbrain.org

February 5-8

AANLCP Conference

San Antonio, TX

www.aanlcp.org

March 12

AACIL Gala Benefit

UM Biomedical Science Bld.—Ann Arbor, MI

www.aacil.org

June 20-23

CMSA National Conference

Long Beach Convention Ctr.—Long Beach, CA

www.cmsa.org

July 19-22

SEAK Worker's Comp. Conference

Hyannis (Cape Cod), MA

www.workerscompensationconference.com

22 | RAINBOWVISIONS • WINTER 2015

MBIPC Michigan Brain Injury Provider Council

RINC Rehabilitation & Insurance Nursing Council meetings

Registration at 11:30 a.m. / Lunch at Noon Presentation begins at 12:45 p.m.

Learn Over Lunch Meeting times are noon – 2:00 p.m. (Registration at 11:30 a.m.)

October 16, 2015 Topic: Job Function Matching Speaker: Carolyn Brierley, PT Location: Rattlesnake Club, Detroit, MI RSVP: Shannon Higdon (877)214-1541 or [email protected]

Cost: MBIPC Member $25 / Non-member $60

November 20, 2015

October 13, 2015 Topic: Neurobehavioral Syndromes

Speaker: TBD Location: Flemings, Livonia, MI RSVP: TBD

For information call 810-229-5880.

Speaker: Jacobus Donders, Ph.D., ABPP Location: Prince Conference Center, Grand Rapids, MI

November 10, 2015 Topic: Neurobehavioral Syndromes

Topic: TBD

No meeting in December

Speakers: Jennifer Doble, MD

RINC meetings are presented the third Friday of each month.

Location: Holiday Inn, Livonia, MI

For more information on meetings and membership contact

December 8, 2015 Topic: TBD

Diane Malley: 248-568-5555 [email protected]

Speaker: Michael Lawrence, Ph.D. ABPP-CN Location: Prince Conference Center, Grand Rapids, MI

January 12, 2016 Topic: Addiction Issues Speakers: Carl Christiansen, MD, Ph.D., FASAM Location: Holiday Inn, Livonia, MI

NOTICE: The conferences and events information listed on these pages is dated information. For the most up-to-date information on industry-related conferences and events, please visit: www.rainbowrehab.com.

For updates on meetings, visit www.rainbowrehab.com

WWW.RAINBOWREHAB.COM

WINTER 2015 • RAINBOWVISIONS | 23

• CLINICAL NEWS

Evidence-Based Guidelines: The Development and Dissemination Process By Heidi Reyst, Ph.D., CBIST

Rainbow Rehabilitation Centers

Evidence-Based Guidelines (EBG) came out of the evidence-based medicine (EBM) revolution which transpired over the last 40 or so years. The need arose from an understanding that, for any given standard medical treatment which was assumed to be effective and in the best interest of the patient, there was no real science to indicate that it was actually effective. In fact, as the EBM revolution gained traction, research started to debunk many tried and true medical treatments finding they were not only ineffective, but in some cases were more harmful than good. This turned old assumptions about how medical decisions are made on their head. The “art of medicine” as the old model is often referred, could no longer be the sole impetus for clinical judgments. The new model included the basic aspects of the art of medicine, but also included medical science, in the form of evidence, to inform clinical decision making. The goal of EBM is to link supporting evidence to clinical practice.1 In order to bring evidence derived from medical science to physicians, which then informs clinical judgment, a systematic process is needed. An important output of that process is evidence-based guidelines (EBGs). At a philosophical level, EBGs involve five core concepts:2 24 | RAINBOWVISIONS • FALL 2015

1. Medical decisions should be based on the best available evidence. 2. The patient’s clinical problem determines the type of evidence sought to inform the clinical judgment. 3. Identifying the best evidence means using epidemiological and biostatistical methods. 4. The conclusions from the evidence then must be applied to patients. 5. The performance should be continually assessed. These core concepts are directly derived from EBM and make up the philosophical starting point for effective medical care. The key to moving from this philosophical starting point to effective treatment is to develop EBGs. The development of EBG is a rigorous, complex, and time-consuming process. But at the end of the day, the benefits can far outweigh the barriers. If EBG result in better information getting to practitioners, better diagnosis and care, less variability in care, and improved patient outcome, the development process is well worth the effort.

GUIDELINE DEVELOPMENT —THE GUIDING PRINCIPLES The development of clinical guidelines has many important guiding principles, the sum of which are designed to limit bias and enhance

trustworthiness in the guidelines and is based on the standards set forth by the Institute of Medicine (IOM).3, 4 The first principle is to have a transparent process that clearly describes how the guideline is developed. This is considered to be one of the most, if not the most, important standard. This gets to the heart of guideline trustworthiness. When announcing and disseminating guidelines, a transparent process allows stakeholders the ability to see precisely how the guidelines were developed should there be any concerns or questions. The second principle is to manage conflicts of interest, with a clear eye toward having very few conflicts overall. The third principle is to have a guideline development group that have appropriate proficiency in the applicable field. The fourth principle is to complete a robust, methodologically sound systematic review. The fifth principle is to be clear about evidence quality and recommendation strength. The sixth principle is to clearly articulate the recommendations. The seventh principle is to submit the guidelines for external review. The final principle is to have a plan to update the guidelines as new evidence warrants. For groups developing EBG, the greater the adherence to each of these steps, the greater the level of trust that stakeholders, including the

“Guidelines help clinicians translate best evidence into best practice. A well-crafted guideline promotes quality by reducing healthcare variations, improving diagnostic accuracy, promoting effective therapy, and discouraging ineffective—or potentially harmful—interventions.”5 public and potential beneficiaries of these guidelines, may hold. The use of these guiding principles will ultimately determine if the guideline is welcomed, trusted, and ultimately followed by those stakeholders for whom it was intended. Failure to use them can leave stakeholders with questions as to the integrity of the process, and most importantly, the plausibility of the guideline itself.

THE SYSTEMATIC REVIEW

The previous section focused on principles of guideline development. This section is focused on detailed elements of the system review process which ultimately leads to guideline completion. In 2011, the IOM published a book on standards for systematic reviews titled Finding What Works in Health Care: Standards for Systematic Reviews.6 The following sections summarize the IOM standards for guideline development, with the major steps presented in Figure 1. Initiate Systematic Review The first steps in a systematic review involve the development of standards for the review, which are clear and explicit. These steps are designed to ensure that conflicts of interest and bias are mitigated throughout the review process. The steps of this development are as follows:

individuals who comprise the guideline development group should have clinical expertise and experience as it relates to the focus of the guideline. The members of the team should collectively have experience with systematic review methods and strong knowledge of quantitative methods, i.e., statistical prowess. Obtain stakeholder input. Stakeholder input should be solicited and should be planned throughout the entire process. This can assist in preventing the derailment of the project because a crucial aspect was overlooked. It is also central to the transparency aspect of guideline development. Manage conflict of interest and bias. All members of the team (at any stage of the process) should disclose any conflicts of interest, financial conflicts or potential biases that may exist as it relates to the project. The team

should exclude any members whose bias would impact the credibility of the project. This is crucial, as there are a host of ways in which guidelines could be self-serving or disreputable. Imagine for a moment that a new guideline is distributed on the management of a chronic heart condition. Imagine also that the guidelines were bereft of transparency and made no mention of guideline developer conflicts of interest. If at the end of the day, imagine that the guideline development team was predominately from a pharmaceutical company whose recently developed drug has been targeted as the treatment for that condition. Should physicians, patients, policy-makers or any other stakeholder have good faith that conflicts of interest did not inject bias into the process? This example highlights the importance of managing bias in the guideline development process. It

Figure 1. Steps to a Systematic Review

Initiate Systematic Review

Find & Assess Individual Studies

Synthesize the Body of Evidence

Report Systematic Review Findings

Establish a review team. The team of WWW.RAINBOWREHAB.COM

FALL 2015 • RAINBOWVISIONS | 25

• CLINICAL NEWS EVIDENCE-BASED GUIDELINES… means not only having full disclosure of any conflicts, but also limiting the sum total of conflicts. Develop the review topic. This is the starting point for the active guideline development stage. The guideline topic must be clearly articulated and link the treatment to the outcome of interest. In addition, once topic development is complete, it should be evident that the area of review is truly needed. Topic development is done through formulation of a clinical question utilizing a uniform process.

The Evidence-Based Search Question: PICOT In order to complete a systematic review, it is necessary to first develop concise clinical questions that lend themselves to finding appropriate literature when conducting a literature search. The searchable question is the key to finding any and all available evidence when developing evidence-based guidelines. If the question itself is written poorly, the output of the search may yield the same poor result. PICO is a mnemonic to assist with understanding the elements needed to develop a searchable question. While there are numerous versions of question formats, the focus here is on the PICOT structure. The original formation was PICO (Davies, 2011), but the T is sometimes used, as are a variety of other variations. These are the PICOT elements:

P Population, Patient or Problem. Who are the subjects or the main disease or healthcare problem? Example: adults with diabetes mellitus

I This refers to the intervention, treatment or diagnostic tool that is being reviewed. Example: medical nutrition therapy

C This refers to comparison, or the main comparative

intervention. What is being compared? In some cases it can also refer to the control group used in studies. Example: versus blood glucose monitoring alone

O This represents the measurements or desired outcome. Example: achieve and maintain blood glucose levels in the normal or as close to normal range

T This represents time frame.

Example: within six months

So, how would this question look once all the elements are in place? Do adults with diabetes mellitus, who are treated with medical nutrition therapy versus blood glucose monitoring alone, achieve and maintain blood glucose levels in the normal or close to normal range within six months?

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At a basic level the questions relate the diagnosis/treatment to the outcome of interest. For example, the guideline developers may want to know about the best, most effective health screen. A question might be “what is the best method to screen for breast cancer?” Or, it may be a treatment of interest. A question for this scenario might be “what is the best treatment for diabetes mellitus?” These broad level questions get at the heart of the systematic review topic, but they are too broad in scope to begin the next step of the process. What is needed is a very clear question that will lend itself to a structured review of the available evidence. The side bar at left provides an example of one such process for question generation. Develop the systematic review protocol. The next major step in the systematic review process is to develop a welldefined protocol that will be followed explicitly. Figure 2, p. 27, lists the steps in this process. Submit the protocol for peer review and make the final protocol available to the public. This consists of a public comment period and a public report on the outcomes from the commentary. When that process is complete, the entire protocol should be made available to the public. When this is complete the next phase is to conduct a comprehensive search to find all available evidence. Find and Assess Individual Studies This is the phase of guideline development where the available evidence is garnered. Figure 3, p. 27, outlines the steps of this process. Conduct a comprehensive, systematic search for evidence. The amount of data in searchable databases is overwhelming. This is the starting point for evidence collection. But this voluminous data may only tell part of the story, as much research goes unpublished or the data in published studies may only be partially reported. To accomplish this step, specialists trained in performing systematic reviews must be employed. They are tasked with searching bibliographic databases, citation indexes and other means to find potential studies which meet the preordained selection criteria. Address potential bias in reported results. This step involves looking beyond the usual published studies. Unpublished, or grey literature (that which is produced on all levels of government, academics, business and industry in print and electronic formats, but which is not controlled by commercial publishers, e.g., www.greylit.org), should also be sought after to reduce the potential bias of using only traditionally published studies.

Figure 2. The Systematic Review Protocol

Figure 3. The process for finding and assessing evidence

Define the context and rationale for the review as well as the study screening and selection criteria. Define the outcome measures, time points, interventions and comparison groups.

Conducting a comprehensive, systematic search for evidence. Critically appraise each study

Address potentially biased reporting of research results.

Define the search strategy for identifying relevant evidence Define the procedures for study selection Define the process for identifying and resolving disagreement among researchers in study selection and data extraction.

Manage data collection

Screen and select studies Document the search

Define the process for critically appraising the evidence found in the literature search. Define the method for evaluating the total body of evidence, which includes quantitative and qualitative strategies Define the process for any planned analysis of different treatment effects across the difference studies (i.e., meta-analysis). Define the timetable for the review.

Synthesize the Body of Evidence Use a systematic method to evaluate the body of evidence. This stage involves looking at a variety of qualities for each outcome examined. This includes assessing risk of bias, consistency, precision, directness and reporting bias. It also entails systematically assessing observational studies (where assignment of subjects cannot be directed), as well as using clear characterizations of confidence in effect sizes. The Figure 4 on page 28 reviews the criteria for judging evidence.

Screen and select studies. Strict adherence to the inclusion or exclusion criteria is key. Either abstracts or full-text articles are reviewed. Typically two members of the team review each abstract/article against the inclusion criteria. If both reviewers concur, the study is either in or out depending on the determination. If there is a conflicting answer, there is a protocol to determine the final outcome.

Conduct a qualitative synthesis. This entails describing the methodological aspects of the evidence, the strengths and limitations of the studies, as well as the flaws and biases. The team also looks at the individual studies in relationship to the overall findings as well as patterns across studies, and assesses their relevance to the study population and the PICOT question posed.

Document the search. This entails meticulous documentation of the search strategy, as well as the final outcome for each study and the reason for inclusion or exclusion,

Determine if a meta-analysis is needed. This entails justifying the need for pooled estimates.

Manage the data collection. Once the studies are selected, the data must be extracted, using standard protocols. Critically appraise each study. This involves assessing bias, the relevance of the population, intervention and outcome measure in each study.

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Meta-analysis process. If meta-analysis is warranted, use experts to conduct it and ensure all relevant statistical norms are followed. Reporting Systematic Review Findings The final aspect of the systematic review entails preparing the final report using a structured format, initiating a peer review of the draft report and publishing the final report ensuring free public access. ❚

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• CLINICAL NEWS EVIDENCE-BASED GUIDELINES… Figure 4. Levels of evidence

METAANALYSIS

Studies of Studies

SYSTEMATIC REVIEWS RANDOMIZED CONTROLLED STUDIES

Experimental Studies

QUASI-EXPERIMENTAL STUDIES

COHORT STUDIES CASE CONTROL STUDIES

Observational Studies

CASE REPORTS

Definitions Meta-analyses Meta-analysis is a systematic, objective way to combine data from many studies, usually from randomized controlled trials (RCTs), and arrive at a pooled estimate of treatment effectiveness and statistical significance. Meta-analysis can also combine data from case/ control and cohort studies. The advantage to merging these data is that it increases sample size and allows for analyses that would not otherwise be possible. They should not be confused with reviews of the literature or systematic reviews. Systematic Reviews A systematic review is a comprehensive survey of a topic that takes great care to find all relevant studies of the highest level of evidence, published and unpublished, assess each study, synthesize the findings from individual studies in an unbiased, explicit, and reproducible way and present a balanced and impartial summary of the findings with due consideration of any flaws in the evidence. In this way it can be used for the evaluation of either existing or new technologies and practices. Randomized Controlled Trials An RCT is a study in which 1. There are two groups, one treatment group and one control group. The treatment group receives the treatment under investigation, and the control group receives either no treatment (placebo) or standard treatment. 2. Patients are randomly assigned to all groups.

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Quasi-Experimental Studies Quasi-experimental research shares similarities with the traditional experimental design RCTs, but they specifically lack the element of random assignment to treatment or control. Instead, quasi-experimental designs typically allow the researcher to control the assignment to the treatment condition, but using some criterion other than random assignment (e.g., an eligibility cutoff mark). Cohort Studies Cohort studies or longitudinal studies involve a case-defined population who presently have a certain exposure and/ or receive a particular treatment that are followed over time and compared with another group who are not affected by the exposure under investigation. Case Control Studies Patients who already have a certain condition are compared to those who do not. Case Series and Case Reports These consist of collections of reports on the treatment of individual patients with the same condition, or of reports on a single patient. Case series/reports are used to illustrate an aspect of a condition, the treatment or the adverse reaction to treatment. University of Minnesota Bio-Medical Library. Accessed 8/2/2015. http://hsl.lib.umn. edu/sites/default/files/Understanding%20Research%20Studies%202010.pdf

THE CRITERIA FOR JUDGING EVIDENCE What are the criteria for judging evidence? There are a variety of aspects with which to judge. Is the evidence relevant to the clinical question (PICOT)? How much evidence, or how many pieces, is sufficient? What is the veracity of the information? When looking at the body of evidence as it relates to the clinical question each of these areas must be ascertained. When looking at evidence there are two levels of examination. The first level examination is the individual studies. The team assesses the study's relevance to the clinical question, its methodological design, the quality of its implementation, the number of subjects, and the precision of the study findings.8 The second examination is at the level of the entire body of evidence. The team assesses the consistency of findings, examines the total number of subjects and the precision of findings after pooling subjects/studies (i.e., meta-analysis), as well as the strength of the studies making up the entire body.8 There are numerous determinants of the quality of evidence. One critical factor is the study design. Certain study designs will rate higher than others and a general rating level is best describe in a levels of evidence pyramid (Figure 4, pg. 28). For rating individual studies, the ‘unfiltered’ section is utilized. Generally, the randomized control trial is rated highest followed by cohort studies, case control studies and crosssectional studies. The quality of the study design itself also impacts the overall study quality. Important factors include the power analysis, quality of the outcome measure, quality control on the intervention, the use of blinding, methods for blocking/subject matching, as well as study implementation (e.g., small sample sizes, failures in blinding, attrition of subjects or missing data.)8 Lastly, directness refers to the extent to which the subjects, interventions and outcome measures are similar to the clinical question. Well designed, randomized control trial with consistent effect sizes are of little usefulness if they don’t directly pertain to the outcome measures.

References—Evidence-Based Guidelines 1. Fletcher R, Fletcher S. Evidence-Based Approach to the Medical Literature. JGIM. 1997; 12 (supplemental 2): S5-S14. 2. Davidoff F, Haynes B, Sackett D, Smith R. Evidence-Based Medicine. BMJ. 1995; 310 (6987): 1085-1086. 3. Graham R, Mancher M, Wolman D, Greenfield s, and Steinberg E. Clinical Practice Guidelines We Can Trust. Institute of Medicine of the National Academies Press. 2011. 4. Ransohoff D, Pignone M, Sox H. How to Decide Whether a Clinical Practice Guideline is Trustworthy. JAMA; 2013; 309 (2): 139-140. 5. Rosenfeld R, Shiffman R. Clinical Practice Guidelines Development Manual: A Quality Driven Approach for Translating Evidence into Action. Otolaryngol Head Neck Surg. 2009; 140 (Suppl 6): 1-73. 6. Eden R, Levit L, Berg A, Morton S. Finding What Works in Health Care. Standard for Systematic Reviews. Institute of Medicine of the National Academies Press. 2011. 7. Davies K. Formulating the Evidence Based Practice Questions: A Review of Frameworks. Evidence Based Library and Information Practice. 2011. https://ejournals.library.ualberta.ca/index.php/EBLIP/article/viewFile/9741/8144. 8. Dijkers M. TBI Guidelines Training Document. TBI Guidelines Project.

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• VOCATIONAL CORNER

By Carolyn A. Scott, Ph.D., CBIST Rainbow Rehabilitation Centers

Getting the

GIST: Group Interactive Structured Treatment—



Social Competence



A new social communication group at Rainbow

30 | RAINBOWVISIONS • FALL 2015

Social Communication—

An individual’s ability to receive and interpret verbal and nonverbal information from the environment as well as the ability to generate a response or initiate communication with others. There are a number of cognitive and emotional skills that contribute to one’s ability to communicate, as defined above. Among individuals with moderate to severe traumatic brain injury (TBI), weaknesses in these areas is not uncommon. In fact, research has demonstrated that social communication is often impaired among individuals with moderate to severe TBI.1 Damage to the frontal and temporal lobes, common after a TBI, can lead to impairments which can negatively influence social communication. These include: • Aphasia • Trouble maintaining eye contact • Slowed processing • Difficulty letting others speak • Difficulty focusing on a conversation • Interest in communicating with others • Impaired memory • Inability to hold information in your mind • Difficulty planning/organizing thoughts • Difficulty with turn-taking in conversation • Problems staying on track while talking • Difficulty regulating emotion during conversation • Concrete thought processes • Trouble understanding social boundaries • Difficulty initiating conversation and rules, such as physical space • Inappropriate language, topics of • Lack of self-confidence conversation • Inability to read social cues, sarcasm, tone of voice These deficits in social communication skills have been found to result in negative vocational outcomes and reduced social support and contacts.2,3 Given the profound impact that poor social communication skills can have on daily life, addressing these deficits is important. While there are a number of treatments designed to address the deficits in social communication, many of these are designed for different populations, such as individuals with schizophrenia. GIST or Group Interactive Structured Treatment,4 is an evidence-based treatment to improve social

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FALL 2015 • RAINBOWVISIONS | 31

• VOC CORNER GIST SOCIAL COMPETENCY… competence specifically in individuals with TBI or other cognitive deficits. It was designed by Lenore A. Hawley, a social worker, and Jody K. Newman, a speech & language pathologist, and is based on their work leading social communication groups at Craig Hospital. A study on the efficacy of GIST utilizing a randomized treatment and deferred treatment design demonstrated that individuals with TBI improved their social skills and reported improved overall life satisfaction.5 The treatment effect was maintained at three, six, and nine-months post-treatment.5 These findings were particularly exciting as most group participants had experienced a severe TBI and on average were 9 to 10 years post TBI.5 This would suggest that there is hope for improvement in social skills even among a population where significant improvement in functioning may not be typically expected. An ongoing randomized control trial initiated at Craig Hospital and funded by the United States Department of Defense is evaluating the efficacy of GIST among military veterans, service members, and civilians with TBI. The study is designed to demonstrate the effectiveness of GIST on a larger scale and with therapists other than the original authors. GIST is described by the authors as a holistic dual-disciplinary group therapy based on holistic neurorehabilitation, group therapy and cognitive behavioral modification. It is also a structured treatment. This means that there is set material reviewed and homework assigned during each of the 13, 1.5 hour sessions. It is also a group therapy. The authors designed the treatment to consist of approximately five to eight group participants. Individuals living with a TBI may have limited awareness into their deficits and present as concrete or rigid, and a group format can be extremely

beneficial. Group members learn they are not alone in their struggles and may be more receptive to feedback from peers rather than professionals. GIST groups are facilitated by two group therapists. Having two therapists provides an opportunity for therapists to play off of each other’s disciplinary strengths. Each acts as an independent social role model. Additionally, when one group leader is discussing a new topic, the other therapist can monitor group members’ reactions to the material. It should be noted that the therapists are there to guide group discussion and not “teach” the group. The groups are not didactic in nature despite informational material being presented in each session.

About the author

Carolyn A. Scott, Ph.D., CBIST Psychologist

Dr. Scott earned her Ph.D. in Clinical Psychology at Wayne State University. After an internship at the John D. Dingell VA Medical Center, she completed specialized post-doctoral training in Neuropsychology and Rehabilitation Psychology at the Rehabilitation Institute of Michigan. While there, Dr. Scott worked with individuals who had experienced traumatic brain injuries, stroke, spinal cord injuries, and other neurological and orthopedic conditions on both an inpatient and outpatient basis. In addition to other responsibilities, Dr. Scott provides client and team consultation services and brief and expanded neuropsychological evaluations at Rainbow Rehabilitation Centers, Inc.

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It is important to note that group members identify their own areas of weakness and set their treatment goals based on these areas. Therapists provide assistance in assuring that goals are measurable and relevant. By setting their own goals and consistently reviewing goals for signs of progress, engagement in sessions improves among group members. While there are 13 sessions, the initial session is designed as an introduction to the group structure and purpose of treatment. The first educational material, "How brain injury may influence social communication skills," is discussed. The other 12 weeks consist of active therapy and follow the below format: 1. The big ideas from the prior session are reviewed. Homework is also reviewed. 2. A new topic is introduced. 3. Skills are practiced together in group, and real-life problems are addressed. 4. New homework is assigned. Additionally, time for informal practice of communication skills occurs during a scheduled break that occurs during each session. Topics such as assertive communication, conflict management, and starting and maintaining conversation are covered. Throughout the course of treatment there are multiple opportunities for group members to practice their social skills and receive and provide feedback to others. One of the 12 sessions involves an outing where group members can practice their skills in the community. In another session, group members are video-taped interacting with someone they do not know and later, individual video tapes are reviewed within the group. Furthermore, homework typically requires the group member to seek feedback on their social communication skills from family members or friends. This allows for generalization of the messages received during treatment as well as additional opportunity for skill mastery. While GIST is a structured treatment, it allows for some flexibility which can be beneficial when working with individuals who have had a TBI. Hawley and Newman state that individual topics can be extended across two sessions if a topic needs to be covered in more detail. Similarly, topics can be extended if further repetition of material would benefit the group. Groups at Rainbow typically run for two hours to allow for increased repetition of material to improve carryover of new information. The extended time period also facilitates increased unstructured socialization time. Group members have reported that this time builds WWW.RAINBOWREHAB.COM

group cohesion. As time passes, maintenance of new skills will be monitored through “Long-Term Communication Plans” that group members fill out at the end of their 13 weeks of treatment. At least two follow-up sessions are encouraged by Hawley and Newman after the completion of treatment so that therapists can check on members’ progress towards their goals and utilization of the skills they learned during group. Additionally, group members are encouraged to have their family and friends continue to provide them with feedback related to their goals and overall social skills. At Rainbow Rehabiltiation Centers, GIST groups are run as a part of Rainbow U and at the Vocational Rehabilitation Center. Nerico Johnson was a recent participant in a GIST group at the Ypsilanti Treatment Center. When asked what he liked about the group, he noted that he felt GIST “helped me with more eye contact and helped me [sic. feel] more prepared with professional people.” Nerico added that speaking with unfamiliar people was sometimes uncomfortable in the past, but that the skills he had learned during treatment were useful when he recently participated in two community services projects. Given the demonstrated efficacy of the treatment, its positive reception by group members and apparent benefit to clients, GIST will continue to be offered at Rainbow and expanded to other treatment centers. If you have any questions about GIST and how it may be helpful to you or a friend, please feel free to contact Carolyn A. Scott, Ph.D., CBIST. ❚ References 1. Dahlberg CA, Hawley LA, Morey CE, Newman JK, Cusick CP, Harrison-Felix CL. Social communication skills in persons with post-acute traumatic brain injury: Three perspectives. Brain Injury. 2006. 20:425-35. 2. Hoofien D, Gilboa A, Vakil E, Donovick PJ. Traumatic brain injury (TBI) 1020 years later: A comprehensive outcome study of psychiatric symptomatology, cognitive abilities and psychosocial functioning. Brain Injury. 2001. 15:189-209. 3. Oddy M, Coughlan T, Tyerman A, Jenkins D. Social adjustment after closed head injury: A further follow-up seven years after injury. Journal of Neurology, Neurosurgery, and Psychiatry. 1985. 48:564-8. 4. Hawley LA, Newman, JK. Group Interactive Structured Treatment – GIST: For Social Competence. An Evidence Based Program to Develop Social Competence for Individuals with Traumatic Brain Injury or Other Cognitive Deficits. 2012. 5. Dahlberg CA, Cusick CP, Hawley LA, et al. Treatment efficacy of social communication skills training after traumatic brain injury: A randomized treatment and deferred treatment controlled trial. Arch Phys Med Rehabil. 2007. 88: 1561-73.

FALL 2015 • RAINBOWVISIONS | 33

• NEWS AT

Genesee Treatment Center adds space and services This has been a busy year for the team at the Genesee Treatment Center. Spring marked the opening of semi-independent living apartments nearby. Now, clients who are ready can practice activities of daily living in a safe and structured setting. Also, the latest addition to the treatment center involves the expansion into adjacent space—2,500 sq. ft. of space. Several rooms will become the Genesee Treatment Center's home of Rainbow U, an outpatient and day treatment program offering interesting therapeutic activities like photography and cooking skills. Space in the new area will also be dedicated to the growing vocational program with the aim of preparing clients for competitive employment. "The team at Genesee is looking forward to the expansion and I know there is a great need in this community for the services we offer," remarked Rainbow President Bill Buccalo. "We're especially excited to have a new location for Rainbow U which has been so successful at the other centers."

Rainbow congratulates "Nursing in the Community" award winner, Cathy June Each year, Rainbow sponsors the Nursing in the Community award at the Nightingale Awards for Nursing Excellence recognition dinner. This year we are proud to recognize Cathy June, a nurse educator at Detroit Receiving Hospital who stepped in to help the cash-strapped Detroit Fire Department train their firefighters in CPR. Through her connections and endless effort, Cathy secured $52,000 in grants to fund the program. Currently 98 percent of Detroit firefighters have been trained in CPR thanks to her. "What Cathy did was heroic," remarked Lisha Clevenger Rainbow's vice president of admissions and marketing 34 | RAINBOWVISIONS • FALL 2015

who presented Cathy with her award. "In addition to her regular job, she and her volunteers have trained nearly 800 firefighters since they began in April of 2013. She was passionate that the Detroit Fire Department have the ability to save lives whenever they could." To be sure that the fire department can sustain the certifications, Cathy has planned for 15 firefighters to be trained as CPR instructors in order to conduct training in-house and in the community; a future cost savings for the department and benefit to the citizens of Detroit. Congratulations, Cathy! We are honored to recognize your accomplishments!

New equipment at the Farmington Hills Treatment Center We are pleased to announce that the Farmington Hills Treatment Center now offers the RT 300 Leg and Arm FES Cycling system with SAGE. WHAT IS FES? Functional Electrical Stimulation (FES) is a well-established rehabilitation technique that uses pulses of electrical current to stimulate peripheral nerves evoking muscle contractions and patterned muscle activity. Stimulating these nerves evokes patterned movement of the legs or the arms. This is how FES enables the muscles to perform work even though an individual may have lost all or some voluntary control of the muscles. WHAT IS SAGE? SAGE is the computer FES system where the motor is fully integrated with the electrical stimulation. SAGE dynamically controls the motor to maximize the work that the muscles do, ensuring performance and outcomes. The motor speed, resistance and torque (how hard the motor turns) are all automatically responsive to the individual’s performance and can be set on various phases for the therapy intervention progression. HOW DOES IT WORK? Patients are seated with electrodes attached to the surface of their arms or legs. The system sends computer-generated, low-level electrical impulses (SAGE) to the patient’s arms or leg muscles which cause coordinated contractions, such as stimulation to the quadriceps, hamstrings and gluteal muscles used in cycling with the legs. WHAT ARE THE BENEFITS? • Prevent muscle atrophy • Relax muscle spasms • Improve circulation • Increase range of motion • Simulate coordinated contractions between muscle groups The RT 300 Leg and Arm FES Cycling system is beneficial for clients with spinal cord injury, traumatic brain injury, or for those who have had a stroke.

RT 300 Leg and Arm FES Cycle Photo: Courtesy of Restorative Therapies

Source: http://www.restorative-therapies.com

• PERSONAL PERSPECTIVE NERICO JOHNSON… Continued from page 15

memory is still fairly sharp. The accident has required Nerico to overcome many struggles yet he’s never allowed his uphill battle to define him or who he can be. He knows that it’s important to recognize that everyone and everything has their own struggles and that anyone is capable of making a difference in big and little ways. As part of his rehabilitation, Nerico participates in the Rainbow U program. Rainbow U is a therapeutic day treatment program for residential and outpatient clients that was developed to expand on skills in a variety of areas. The program offers classes focused on current events,

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fitness, computer skills, and life skills that will advance participants’ relational, emotional, social, and professional knowledge to increase their success in moving forward in every aspect of life. Nerico has come so far since his accident and is optimistic about his future. Whether he’s talking about a day on the lake fishing, recalling the game from the night before, shooting some billiards or talking about his work at Rainbow, Nerico is sure to light up the room with his genuine smile. There’s no doubt that he is just one small spark of a necessary change that would ignite the world into a much more beautiful place to live. ❚

FALL 2015 • RAINBOWVISIONS | 35

• NEWS AT

Congratulations 2015 Rainbow scholarship winners! Rainbow has a history of providing scholarships to high school seniors who intend to pursue a health care or health services course of study, and last spring was no exception. Five-hundred dollar scholarships were recently awarded to students from school districts in our treatment areas. All winners were Michigan residents with a minimum GPA of 3.5, and all planned to enter a fulltime college program this fall. Schools within the Ann Arbor, Belleville, Detroit, Farmington, Farmington Hills, Flint, Garden City, Grand Blanc, Lincoln Consolidated, Livonia, Southfield and Ypsilanti districts were notified of the program in early spring. A similar announcement is planned for early 2016. From left: Maya Makhlouf (Pioneer High School), Anna Deveaux (Farmington High School), Kayla Johnson (Lincoln High School), Lillie Ross (Pioneer High School), Hirva Joshi (Pioneer High School) and Cali Curlee (Lincoln High School). Not pictured: Sanaya Irani (North Farmington High School) and Udochukwu Nweze (Pioneer High School).

Independence: Where do you want to go and when do you want to get there? We have one of the largest service areas in Michigan so chances are good that we’re going your way. Experienced drivers are also specially trained in caring for individuals with special needs. So while you are enjoying your independence you’ll also have confidence that comes from knowing you are safe. Rehab Transportation. We are…

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Congratulations to these outstanding graduates!

Rainbow Rehabilitation Centers is proud to recognize the accomplishments of two clients who are members of the Class of 2015! We wish them success as they continue setting and achieving their goals.

Joshua Holbrook Josh Holbrook graduated with his associates degree in general education from Oakland Community College in 2015. He plans to continue his education, but at this time is unsure of the field of study. His goal is to be able to support his family and to be a great role model for his twin boys. At the moment, Josh is exploring different avenues including a degree in business or becoming a licensed real estate agent. Josh continues to work hard to reach his goals.

Misty Leonard As a teenager with an active social life, Misty has fond memories of her high school experience at North Farmington High School. Attending dances, plays and sporting events top the list. In her spare time she also enjoys playing video games, listening to music, chatting on Facebook and going to the movies with friends. Misty graduated in the spring and spent the past summer working in Rainbow's Young Adult Vocational Program. This fall she plans to attend PREP, a post-secondary program offered in collaboration with Farmington Public Schools and Wayne State University. Beyond that, Misty's goal is to someday pursue a career as a veterinary technician. We wish her much success in the future!

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FALL 2015 • RAINBOWVISIONS | 37

• NEWS AT

Rainbow artists display work at brain injury conference Rainbow clients come from all walks of life and several have artistic backgrounds. Some take a new path during their recovery and have discovered a love and talent for art while receiving therapy at Rainbow. Rainbow U offers many classes in various artistic media. Woodshop, pottery, photography, canvas painting and fibre arts are

just a few offered in 2015. These talented artists created one-of-a-kind works to be included in a drawing at the Rainbow booth during the Brain Injury Association of Michigan (BIAMI) annual conference in September. Their creativity and dedication is an inspiration to us and, we hope, to you.

Nikki

Nicole loved coloring as a child and took art classes in high school. When she was in the hospital after her car accident, she revisited coloring to improve her hand dexterity. Three years ago, when the Rainbow U program started, she found herself in a fiber arts class which quickly ignited a fire that was both familiar and refreshing at the same time. With some encouragement from Char Sobieski, Nikki eventually began to experiment with other mediums. Char says, "Nikki has an end use in mind for every piece. She's extremely thoughtful and has someone or some specific purpose in mind for everything she creates." The white and crystal jewelry set that she's created for this year's BIAMI conference is intended for a bride. When planning it, she pictured the beautiful vision in white walking proudly down the aisle wearing her jewelry. This is the third year that Nikki's artwork is featured at the conference and she couldn't be more thrilled to be a part of it again.

Tom

Tom has always had an interest in art but it wasn't until he joined a Rainbow U fiber arts class taught by Char Sobieski that he realized how deep his passion went. Tom found himself completely enthralled with the freedom and joy his art made him feel. He enthusiastically recalls feeling comfortable drawing with colored pencil but is grateful for Char who Tom says pushed him out of his comfort zone. Char notes that when Tom first started the program, he was timid but has flourished over time, "He's beginning to develop a lot of confidence and really wants to explore all mediums of art," she said. This is the second year that Tom's work is being highlighted at the BIAMI Conference and he couldn't be more proud. Whether it be drawing from a pre-existing painting, creating hand-painted silk scarves or making a ceramic water bowl for his parent's dog, Tom is inspired by nature and has developed such talent that any piece he's working on truly depicts his passion and skill. 38 | RAINBOWVISIONS • FALL 2015

Dominique

Dominique is relatively new to art having participated in art therapy for only two years. In the beginning, she was unsure of new creative experiences, including basketry. Then, last spring, she had the opportunity to make several baskets for an Easter project and that's when her interest was captured. "Once she mastered how to make them it was like second nature," said Nicole Korbecki, occupational therapist at Rainbow's Young Adult Program. "She is extremely patient with her work and likes to complete crafts now as a hobby." This is Dominique's first year as a featured artist at Rainbow's booth and she is so proud of her work. She enjoys sharing the items she makes with others.

Michelle

Michelle began working with Char Sobieski on basketry in the spring of 2015 while attending Rainbow's Young Adult Program. "Michelle took to basket making as though she had been weaving forever. This art form seems very natural to her," said Char. "She is thoughtful, focused and creative when weaving her baskets." Michelle enjoys other forms of art and took drawing and painting classes in high school. Her creativity extends to the kitchen where she loves to cook and bake. Michelle's goal is to attend a culinary arts program in the near future. Meanwhile she is gaining experience working regularly in Rainbow's Vocational Program at the Terrace Bistro restaurant.

LaShai

Well focused and detail oriented, LaShai has been participating in art therapy classes for five years and has always enjoyed creating art projects. She is eager to try new mediums and loves to keep busy. LaShai is often found with knitting needles or other such projects during her free time at Rainbow's Young Adult Program in Farmington, MI. When she's not creating artwork, LaShai also enjoys spending time with friends, dancing, listening to music or simply reading. This is LaShai's first year as a featured artist for Rainbow's booth at the BIAMI Conference. WWW.RAINBOWREHAB.COM

FALL 2015 • RAINBOWVISIONS | 39

• NEWS AT

New Professionals Rebecca Depaulis, BS, CTRS Recreational Therapist

Rebecca began her career with Rainbow as a Rehabilitation Assistant and was recently promoted to Recreational Therapist, working at Rainbow's NeuroRehab Campus® in Farmington Hills, MI. She attended Eastern Michigan University where she earned a bachelor’s degree in therapeutic recreation.

Sarah McGrath, LLMSW Case Manager

Sarah is the newest mental health case manager at the Oakland Treatment Center which is home to Rainbow's pediatric and young adult programs. She comes to Rainbow with experience as a treatment specialist/case manager at Crossroads for Youth and the Whaley Children's Center. Sarah holds a Master of Social Work degree from Michigan State University.

Keshia Hines, BS Assistant Residential Program Manager

Keshia was recently promoted to Assistant Residential Program Manager at the NeuroRehab Campus®. She holds a Bachelor of Science, Health and Human Performance degree from University of Louisville in Kentucky and has over three years of experience in the brain and spinal cord injury field working at Neuro Restorative. Keshia coached women’s basketball at Louisville Collegiate School and also played on the University of Louisville’s women’s basketball team. 

Ann Zubeck, BS, CBIS Case Manager

Ann joins the team at the Genesee Treatment Center as their newest case manager. She holds a Bachelor of Science degree in Neuroscience and Psychology from Central Michigan University, and previously worked at Feinberg Consultants as a client services manager. Ann is a Certified Brain Injury Specialist.

Lillian Sparks, BS Corporate Recruiter Lillian joins the human resources team at Rainbow's Livonia Corporate Center where she is responsible for recruiting new professionals. Her previous 10 years of experience as a district manager for Prometric included hiring responsibilities. She is a volunteer with the Brightmoor Life Challenge program which prepares adult participants in a variety of living skills including resume building and interviewing. Lillian holds a bachelor’s degree from the University of Toledo in communications.

Katelyn Kortright, AAS Digital Marketing Specialist Katelyn holds an Associate of Applied Science Degree from The Art Institute of Michigan and a graphic design diploma from Specs Howard School of Media Arts. She has extensive experience in graphic design, social media and website management. Katelyn joins Rainbow's marketing team at the corporate offices in Livonia, MI.

40 | RAINBOWVISIONS • FALL 2015

Employees of the Season

Spring 2015

Rehabilitation Assistants Belleville: Dartisha McKinnes

NRC: Breonna Robinson, Lanikia Hayes,

Therapy Staff

Bemis: Pamela Sieting

Cathy Mills, Dawn Wing, Kebra Melik,

Natalie Brown

Roslyn Watson, Barbara Putman

Kaitlin O’Hara

NRC Dining: Megan Hogan

Raymond Scott

Brookside: Taylor Brown Carpenter: Amber Schmenk Center Based: Christopher Thomas

Oakland Townhouses: Lorain Fambro RIPCO: Kevin Kalis

Crane: Andrea Clary Golfside: Elizabeth Sedlarik Highmeadow: Andre Morgan Home Care: Natasha Solomon, Justin Wargo,

Lillian Durecki

Shady Lane 2: Cecil Newlin Southbrook: Sherita Garland Spring Valley: Shardae Brown-Shaw

Jeff Newton, Sabrina Miles-Bentley,

Talladay: Aarsalaan Semna 

Kelly Jarzynski

Textile: Azarri Hassan, Valeria Islas-Montantes

Labor Pool North: Debra Parks

Residential Program Manager Derek Glenn

Don Daniels Anne Marie Caldwell

RIPROC: Neomi Rowe

Farmington: Taylor Smith

Abigail Dull

Rehab Transportation

Charles Dietzel

Professional/Administrative Staff Char Sobieski, Lisa Hildebrandt, Chelsea Campbell, Danyell Solomon, Susan Arney, Heather Garavaglia, Vanessa Queen, Miranda Miller, Gordon Sekerak

Danita Whitt

Maintenance Staff

Rehab Tech

Robert Kurkowski, Dan Milbrath,

Jeff Brozoski

Anders Oygarden

Please join us in congratulating these outstanding staff members! 

Free helmets and fun at the Safety and Health Bike Fair Safe riding was the focus of Rainbow's second annual Safety and Health Bike Fair held on June 20 at Hines Park in Dearborn, MI. We were able to distribute free helmets during the event with the help of many generous sponsors, important for Rainbow since bicycling is a leading cause of sports-related brain injuries in children. The festive event which was open to the public also featured bicycle safety inspections and adjustments, helmet fittings, games, snacks, bike decorations, face painting and temporary tatoos—all free. Two lucky young people won brand new bikes and several

attendees won Tigers tickets, gift cards and more in a raffle. Many area businesses and our vendor partners attended to distribute health information while others donated cash or giveaways to support the Fair. Our sincere thanks to the Brain Injury Association of Michigan, Delta Dental, Arthur J Gallagher and Co, Quality Home Medical, PharmaScript, Priority Health, All Med Medical Supply, Shred Legal, Veritiv, Kroger, Target, EyeMed Vision Care, WDIV, Plante Moran Group Benefit Advisors, Hype Athletics, D & D Bicycles and Michigan.com. Plans are already underway for the 2016 event. Watch for information in early spring.

A special thank you to our helmet sponsors

WWW.RAINBOWREHAB.COM

FALL 2015 • RAINBOWVISIONS | 41

• CLINICAL NEWS TBI GUIDELINES… Continued from page 13

musculoskeletal (spasticity), and psychiatric conditions (depression) are just a few areas affected post TBI.14 By chronicling TBI across the lifespan, and understanding the increased morbidity and mortality that comes with TBI, it is clear that significant care across the lifetime is needed. This care comes at significant cost and it would not be a leap of faith to suggest that by reducing some of the sequelae that contribute to these chronic comorbidities that costs, too, could be reduced. By showing that early rehabilitation on the post-acute side can reduce long-term costs of care, it is expected that the barriers to accessing care may then be addressed.

Early rehabilitation = Long-term cost reductions

Lynn Turner-Stokes evaluated two systematic reviews that looked at the efficacy of rehabilitation as well as cost effectiveness of rehabilitation following aquired brain injury.15 There were three findings of interest. First, the review found grade A (high level) evidence to support that rehabilitation can reduce ongoing care needs. Most significantly, the savings from these reduced care needs exceeded the original rehabilitation costs. Second, there was grade A evidence that for those returning to paid employment, the benefits of return to paid employment (i.e., salary) reduced costs to taxpayers and exceeded the cost of the intervention to return to work. Third, there was grade B evidence (moderate) that early, coordinated rehabilitation can result in cost savings to health service providers via reducing length of stay (without co-occurring reductions in function). Wood et al, found that, on the postacute side of the continuum, early rehabilitation resulted in reduced care needs.16 For these neurobehavioral 42 | RAINBOWVISIONS • FALL 2015

patients, the length of time of admission to post-acute services related to the level of care reduction evidenced by three groups: those admitted within 24 months of injury, those admitted within 24-60 months postinjury, and those admitted after 60 months post-injury. The group treated within two years of injury showed higher reductions in care needs than those admitted later post-injury. While each group had some level of care need reduction, early intervention provided better outcomes. Across all three groups, the care need cost reductions were then estimated. The early intervention group corresponded to estimated lifetime cost savings of £1,098,020 (in 1998 British pounds, or roughly $1.7 million). In 1995, the Brain Trauma Foundation developed a set of clinical guidelines for the treatment of acute hospital care for severe TBI. Despite wide dissemination of these guidelines, adoption was not universal. Interestingly, characteristics of the trauma center impacted guideline adoption rates. For example, for guidelines related to ICP monitoring, Level 1 trauma (versus Level 2 or 3) and centers with neurosurgery residency programs (versus those without) had the highest levels of compliance (68 percent and 76 percent respectively).17 Full compliance Figure 9. Cost savings if Brain Trauma Foundations Guidelines were fully implemented (in millions) $262 $43 $3,800

■ Direct Medical Costs ■ Rehabilitation Costs ■ Social Costs

with the entire set of guidelines was only 16 percent, partial compliance was 17 percent leaving full non-compliance at 67 percent (as measured by not following at least ICP guidelines). In 2007, Faul et al. completed a cost-benefit analysis to estimate the outcomes if the guidelines had been fully adopted.18 They estimated that with high compliance 3,607 lives would have been saved, and that even 50% compliance would have saved 1,305 individuals lives. The annual savings would have been in the neighborhood of $4.6 billion (Figure 9). This figure included annual savings of $262 million in direct medical costs, $43 million in rehabilitation costs, $3.8 billion in societal costs, minus $61 million in implementation costs.18 Ultimately, this represented an estimated return on investment of 430 percent. Those numbers are staggering, and point to the utility of developing guidelines, but also having a system to ensure their widespread adoption. Collectively, these findings outline that rehabilitation not only provides tangible benefits to the patient, but that those efforts also result in tangible savings over the lifetime. The savings impact numerous arenas, including the taxpaying public, which then has implications for potential public policy change. For individuals with moderate and severe injury, the development of guidelines would be a wise investment towards improving lives through gaining access to appropriate and timely rehabilitation. In the world of brain injury rehabilitation, it would surely be easier to conceptualize, let alone treat, if there were a single medical pathway to follow. But the reality of moderate and severe TBI is that care and treatment is very complex, because the brain is very complex. Whether examining

acute care or post-acute care, complexity is abundant. In the last few years, researchers have begun to take a look at some of the factors that contribute to variability in treatment of moderate to severe TBI. While a significant amount of research over the years has examined patient factors to explain outcomes, a newer tact has been to examine treatment center factors that impact patient outcomes. In 2013, Dahdah and colleagues looked to assess patient functional outcomes across TBI Model System inpatient rehabilitation centers.19 Overall, across 21 inpatient rehabilitation settings, they found substantial differences in patient outcomes. When analyzing the data, and controlling for patient level characteristics (e.g., demographics, injury severity, and functional deficits at admission) the differences in patient outcomes across the centers were significant. The authors postulated that the differences by center may point to structural variables such as the number of beds, budgets, equipment resources, staff experience, and the number or types of specialists available to patients.19 A study in 2015 further elucidated this idea of institutional variation impacting patient outcomes in inpatient rehabilitation settings.20 They reported three notable findings. First, they found substantial variations in the program characteristics across the 10 participating centers (census size, referral flow, payer mix, bed numbers, specialty programs and resources), as well as substantial variations of patient characteristics (age, injury severity, functional status, date of injury to admission and LOS). Second, they found that the delivery of treatment services varied considerably across centers, particularly WWW.RAINBOWREHAB.COM

for OT, PT and SLP hours delivered weekly. Lastly, and the key here, they found that the center characteristics explained substantially more variation in patient service delivery than did the patient characteristics. Thus, it appears that institutional level processes, resources or preferences (for example, how many minutes of SLP to provide per day) rather than the patient’s overall clinical presentation (for example, the FIM® Cognitive Score) dictate treatment practices. Perhaps an oversimplification of sorts, but the key point is that there is institution variation, and it does impact patient outcomes. What could clearly impact or reduce variability in clinical practice would be clear guidelines based on evidence of efficacy, which focuses on the patient’s clinical presentation. This is precisely the impetus for the Guidelines Project.

TBI Guidelines

The focus of the project is on individuals with moderate to severe traumatic brain injury, and the overarching goal is guideline development. The project scope addresses two very important areas—rehabilitation as well as disease management. The innovators of this massive undertaking include Wayne Gordon, Marcel Dijkers, Susan Connors, Brent Masel and Mark Ashley. Embarking on

this project was no small feat. It took many individuals, whose collective vision was ultimately to positively impact the lives of people living with brain injury and their families, as well as those of us in the field dedicated to helping them realize their dreams after injury. To fulfill this vision, a clear path must be followed. That path must include transparency and rigorous methodology to ensure that when all is said and done, the guideline development process is free and clear of bias, and crystal clear on its development methods. This rigorous methodology is outlined in the companion article Evidence-Based Guidelines: The Development and Dissemination Process on page 24. A short review and project status update will follow. While there are many steps in a project of this scope, the main process of guideline development is outlined in Figure 10. Because brain injury results in such a wide array of functional deficits, and impacts every domain of life, the scope of the project is quite broad. To be able to manage such a wide scope, five separate panels were created, each with a project leader, with 10 professionals from around the country to participate in the panel. These panels are Behavioral, Cognitive, Functional,

Figure 10. Steps to a Systematic Review

Initiate Systematic Review

Find & Assess Individual Studies

Synthesize the Body of Evidence

Report Systematic Review Findings

FALL 2015 • RAINBOWVISIONS | 43

• CLINICAL NEWS TBI GUIDELINES… Medical and Participation/Vocational. To a degree, the systematic review process for this project entails five ‘smaller’ systematic reviews occurring simultaneously, one for each panel. The first step of initiating the systematic review has been completed. This entailed development of the standards for the review up front, establishment of the review team (a separate team for each panel), obtainment of input from stakeholders, management (i.e., minimization) of any conflict of interest or bias from participants, development of the review topic, development of the systematic review protocol and submission of the protocol for peer review with public availability to the protocol. The next step, to find and assess individual studies for each panel, is the step currently in process. From the dozens of research questions developed in the Initiation of the Systematic Review phase (see PICOT sidebar on page 26), a massive literature search has begun. The steps involved in this search are highlighted in Figure 11, and show which steps are complete, in process, or incomplete. To date, the PICOT questions, along with comprehensive set of search terms have been used to search formal databases such as PubMed, the Cochrane Library and the National Guideline Clearinghouse, to name a few. These searches have resulted in thousands of abstracts. Each of the panels team members are reviewing the abstracts for appropriateness, using a guided methodology for inclusion or exclusion from the process. Each abstract is reviewed by two panel members. If both determine it is not appropriate it is excluded. If both determine it is appropriate it is included. If the first review results in a difference of opinion, the two members work together through a process to obtain a final answer. Once the final list of abstracts for each panel is decided, a team of data analysts read the full text articles, and then extract the key data elements for inclusion in the remaining steps of the process. The key remaining steps of

Figure 11. The process for finding and assessing evidence



Conducting a comprehensive, systematic search for evidence. Critically appraise each study

✔ Address potentially biased reporting of research results.



Manage data collection

Screen and select studies Document the search

finding and assessing individual studies must be completed, followed by synthesizing the entire body of evidence for each panel, and then reporting on the findings of the systematic review. Once the systematic review is complete, guideline development from each of the bodies of evidence from the five panels must occur, followed by the guideline dissemination process. Nearly a year of the 3 year process is complete. While a lot of work has been done thus far, much of the heavy lifting is yet to come. The next year should bring about very exciting project movement, and every step toward guideline development for the rehabilitation and chronic disease management of adults with moderate to severe traumatic brain injury brings us closer towards the supreme goal of increasing access to the right care, at the right time for every person living with a traumatic brain injury. ❚

• MEDICAL CORNER SENSORY DEFENSIVENESS… Continued from page 6

Use of a surgical brush to apply deep pressure touch to the arms, back and legs, which is immediately followed by joint compression at the wrists, elbows, shoulders, hips, knees, and ankles every 90 minutes.2 Environmental and task modifications used to alter sensory input had the potential to improve the performance of everyday activities for adults after TBI.17 Current treatment focuses on limiting the amount of sensory information, reducing distractions, using natural light and giving time and space to “decompress”. •

44 | RAINBOWVISIONS • FALL 2015

Research from Dunn in 2001 describes structuring the activity to include sensory regulating experiences. Other examples of environmental modifications include using structured routines, prompting before transitions, movement breaks and alternating high arousal activities with calming activities.11 When a person experiencing sensory defensive is treated with a multifaceted approach, a sensory diet, environmental modifications and their behaviors are understood by their treatment team and family, the goal of successful participation in a multitude of daily activities can be achieved. ❚

References—TBI Guidelines 1. Brain Injury Association of America. Guidelines for the Rehabilitation and Chronic Disease Management of Adults with Moderate to Severe Traumatic Brain Injury web page. http://www.biausa.org/TBIGuidelines/tbi-rehabilitation-guidelines. Accessed August 5, 2015. 2. Centers for Disease Control Report to Congress. Traumatic Brain Injury in the United States: Epidemiology and Rehabilitation. 2014. National Center for Injury Prevention and Control; Divisions of Unintentional Injury Prevention. Atlanta, GA. 3. National Cancer Institute. SEER Stat Fact Sheets: All Cancer Sites. http://seer.cancer.gov/statfacts/html/all.html. Accessed August 22, 2015. 4. Miller T, Zaloshnja E, Hendrie D. The Cost of Traumatic Brain Injury and its Prevention in the United States. In Jallo, J and Loftus C, ed. Neurotrauma and Critical Care of the Brain. New York/NY: Thieme Medical Publishers; 2009; pp. 441-455. 5. Keehan S, Sisko A, Truffer C, Cowan P, Clemens M. Health Spending Projections Through 2017: The Baby-Boom Generation Is Coming To Medicare. Health Affairs. 2008; 27(2): W145-W155. 6. Zaloshnja E, Miller T, Langois J, Selassie A. Prevalence of Long-Term Disability from Traumatic Brain Injury in a Civilian Population of the United States, 2005. J Head Trauma Rehabil. 2008; 23 (6): 394-400. 7. State of Colorado. Traumatic Brain Injury Medical Treatment Guidelines. Department of Labor and Employment – Division of Worker’s Compensation. http://www.healthpsych.com/tools/tbi.pdf. 8. Kreutzer J, Kolakowsky-Hayner S, Ripley D et al. Charges and lengths of stay for acute care and inpatient rehabilitation treatment of traumatic brain injury 1990-1996. Brain Injury. 2001; 15(3): 763-774. 9. Horn S, Corrigan J, Bogner J et al. Traumatic Brain Injury – Practice Based Evidence Study: Design and Patients, Centers, Treatments and Outcomes. Arch Phys Med Rehabil. 2015; 96 (8 Suppl 3): S178-196. 10. Granger C, Markello S, Graham J, Deutsch A, Reistetter T, Ottenbacher K. The Uniform Data System for Medical Rehabilitation Report of Patients with Traumatic Brain Injury Discharged from Rehabilitation Programs 2000-2007. Am J Phys Med Rehabil. 2010; 89(4): 265-278. 11. Corrigan J, Cuthbert J, Harrison-Felix et al. US Population Estimates of Health and Social Outcomes 5 Years After Rehabilitation for Traumatic Brain Injury. J Head Trauma Rehabil. 2014; 29 (6): E1-E9. 12. Stein S, Georgoff P, Meghan S, Mizra K, Sonnad S. 150 Years of Treating Severe Traumatic Brain Injury: A Systematic Review of Progress in Mortality. J of Neurotrauma. 2010; 27:1343-1353. 13. Masel B. Conceptualizing Brain Injury as a Chronic Disease. Brain Injury Association of America. Vienna, Va; 2009. 14. Harrison-Felix C, Whiteneck G, Amitabh J, DeVivo M, Hammond F, Hart D. Mortality Over Four Decades After Traumatic Brain Injury Rehabilitation: A Retrospective Cohort Study. Arch Phys Med Rehabil. 2009; 90: 1506-1513. 15. Turner-Stokes D. Evidence for the effectiveness of multi-disciplinary rehabilitation following acquired brain injury: a synthesis of two systematic approaches. J Rehabil Med. 2008; 40: 691-701. 16. Wood R, McCrea L, Wood L, and Merriman N et al. Clinical and cost effectiveness of post-acute neurobehavioural rehabilitation. Brain Injury. 199; Vol 13 (no 2): 69-88. 17. Hesdorffer D, Ghajar J, Iacono L. Predictors of Compliance with the Evidence-based Guidelines of Traumatic Brain Injury Care: A Survey of United States Trauma Centers. J Trauma. 2002 (52); 1202-1209. 18. Faul M, Wald M, Rutland-Brown, Sullivent E, Sattin R. J Trauma. 2007; 63(6): 1271-1278 19. Dahdah M, Barisa M, Schmidt K, et al. Comparative Effectiveness of Traumatic Brain Injury Rehabilitation: Differential Outcomes Across TBI Model Systems Centers. J Head Trauma Rehabil. 2013; 29(5): 451-459. 20. Seel R, Barrett R, Beaulieu C, et al. Institutional Variation in Traumatic Brain Injury Acute Rehabilitation Practice. Archives of Physical Medicine and Rehabilitation. 2015; 96 (8 Suppl 3): S197-208.

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FALL 2015 • RAINBOWVISIONS | 45

One Thousand Words

Photo by: Andrew Price, CTRS

Clients and employees from Rainbow’s Farmington Hills Treatment Center recently ventured to the famous Hitsville U.S.A., home to the Motown Museum in Detroit for their weekly community outing. They learned about the humble beginnings of Motown Founder Barry Gordy and Motown Records. Hitsville U.S.A. is the nickname given to the first headquarters of Motown Records. It was purchased by Gordy in 1959 and converted into both the record label's administrative building and recording studio, which was open 22 hours a day (closing from 8 to 10 AM for maintenance). 

Locations GENESEE COUNTY Genesee Treatment Center

5402 Gateway Centre Dr., Suite B, Flint, MI 48507 T: 810.603.0040 F: 810.603.0044

OAKLAND COUNTY Farmington Hills Treatment Center 28511 Orchard Lake Rd., Suite A Farmington Hills, MI 48334 T: 734.482.1200 F: 248.306.3197

Oakland Treatment Center 32715 Grand River Ave., Farmington, MI 48336 T: 248.427.1310 F: 248.427.1309

Toll free: 800.968.6644 Email: [email protected] Visit: www.rainbowrehab.com

NeuroRehab Campus® 25911 Middlebelt Rd., Farmington Hills, MI 48336

THROUGHOUT MICHIGAN Home Care

T: 248.471.9580 F: 248.471.9540

T: 800.968.6644

WASHTENAW COUNTY Ypsilanti Treatment Center

Functional Recovery / Home and Community -Based Rehabilitation

5570 Whittaker Rd., Ypsilanti, MI 48197 T: 734.482.1200 F: 734.482.5212

T: 810.603.0040 F: 810.603.0044

WAYNE COUNTY Rainbow Corporate Headquarters

A wholly owned subsidiary of Rainbow Rehabilitation Centers T: 800.306.6406

38777 Six Mile Rd., Suite 101, Livonia, MI 48152 T: 734.482.1200 F: 734.482.3202

Rehab Transportation®

Two vocational centers and over 35 residential facilities 46 | RAINBOWVISIONS • FALL 2015

GENESEE APARTMENT PROGRAM

Discover Semi-Independent Living

in Genesee County!

Skills for Life

Introducing a safe, supportive environment for the last critical steps toward independence.

• Graduated program allows for greater levels of independence

• • • • • • • •

Vocational and educational focus Graduated medication management Program fosters independent financial management Coordination of driving evaluations/training Discharge planning and community care follow-up services Community outings Professional staff available 24/7 Support provided by Rainbow's Genesee Treatment Center

Apartment Features ow re

Furnished and unfurnished apartments

Cable/Internet-ready Transportation available

WWW.RAINBOWREHAB.COM

ns @ rai

Laundry facilities in the apartment

ha

to schedule a tour.

nb

Accessible one and two-bedroom units on the ground floor

Email ad miss io

• • • • •

or ation m r o inf for m o b.c

800.968.6644

FALL 2015 • RAINBOWVISIONS | www.rainbowrehab.com

47

38777 Six Mile Road, Suite 101 Livonia, Michigan 48152

Presorted Standard U.S. Postage PAID Permit 991 Ypsilanti, MI

INSIDE:

Getting the GIST: Group Interactive Structured Treatment, a new social communication group at Rainbow

Tell us what you think about RainbowVisions! Do you have a story idea or comment? Email: [email protected]

Day treatment designed around "U" A therapeutic approach to day treatment programming for residential and outpatient clients Rainbow U is adding more options than ever in more places than ever! This fall Rainbow's Genesee Treatment Center becomes the latest venue for Rainbow U, joining established programs in Washtenaw and Oakland Counties. Contact a member of the admissions team today to learn more about this innovative and popular program!

800.968.6644