Models of Brain Injury Service Delivery from Around the Globe

BR A IN INJURY professional vol. 11 issue 2

The official publication of the North American Brain Injury Society

Models of Brain Injury Service Delivery from Around the Globe

On Holistic Neuropsychological Rehabilitation: a Perspective from Oliver Zangwill Centre Brain Injury Case Management and Rehabilitation in the UK An Irish Perspective: ABI Ireland Building Robust Community Based Neuro-Rehabilitation Services & Supports Traumatic Brain Injury Continuum of Care: The Saudi Arabia Perspective CREACTIVE: A European endeavor to improve outcome of patients with Traumatic Brain Injury Model of care for patients with ABI in Teleton Mexico BRAIN INJURY PROFESSIONAL

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contents departments 4 editor in chief’s message 6 guest editor’s message 31 legal spotlight 32 literature review 33 non-profit news 34 legislative roundup

features 8 On Holistic Neuropsychological Rehabilitation: a Perspective from

Oliver Zangwill Centre

By Andrew Bateman, PhD 12 Brain Injury Case Management and Rehabilitation in the UK

By Cathy Johnson

BRAIN INJURY professional vol. 11 issue 2

The official publication of the North American Brain Injury Society

north american brain injury society

chairman Mariusz Ziejewski, PhD VICE CHAIR Debra Braunling-McMorrow, PhD Immediate Past Chair Ronald C. Savage, EdD treasurer Bruce H. Stern, Esq. family Liaison Skye MacQueen executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD marketing manager Megan Bell graphic designer Nikolai Alexeev

brain injury professional

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

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

editorial inquiries 16 An Irish Perspective: ABI Ireland Building Robust Community Based

Neuro-Rehabilitation Services & Supports

By Barbara O’Connell 20 Traumatic Brain Injury Continuum of Care: The Saudi Arabia Perspective

By Ahmed M. AboAbat, BScPT, MHA, PhD 24 CREACTIVE: A European endeavor to improve outcome of patients

with Traumatic Brain Injury

By Guido Bertolini, Giulia Paci, Luca Antiga, Akos Csomos, Rafael Kaps, Isaac Lazar, Malgorzata Mikaszewska, Matteo Mondini, Nektaria Xirouchaki, Roberto Latini, Primoz Gradisek, Joanne Fleming, Theodoros Kyprianou 28 Model of care for patients with ABI in Teleton Mexico

By Dr. Arturo E. Pichardo Egea and Dra. Erika Enriquez Elizalde

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

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

national office

North American Brain Injury Society PO Box 1804 Alexandria, VA 22313 Tel 703.960.6500 Fax 703.960.6603 Website: www.nabis.org Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2014 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 77219-1400, Tel 713.526.6900, Fax 713.526.7787, e-mail mbell@hdipub.com

BRAIN INJURY PROFESSIONAL

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editor in chief’s message

Debra Braunling-McMorrow, Ph.D.

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BRAIN INJURY PROFESSIONAL

Engaging in research, creating solutions and strategies to challenging clinical issues, and impacting legislation to benefit person with brain injury are international issues. For this special edition, we identified authors who are leaders in the larger international community.

Chris MacDonell is the Managing Director for Medical Rehabilitation, International Medical Rehabilitation and Aging Services for the Commission on Accreditation of Rehabilitation Facilities, CARF. She has lead CARF’s efforts to become the most recognized worldwide accreditation in rehabilitation. Chris is an exceptional bridge builder and the best I have experienced in connecting experts and like-thinkers nationally and internationally.

In any given month, Chris can call many countries her “home”.

Dr. Fofi Constantinidou is a Professor of Language Disorders and Clinical Neuropsychology and the Director of the Center for Applied Neuroscience at the University of Cyprus. She serves as the International Networking Group Chair for the American Congress of Rehabilitation Medicine and she was the recipient of the 2013 Experienced Research Award by the Cyprus Research Promotion Foundation.

Fofi has been a champion of cross cultural collaborations her entire career.

This edition is intended to present a broad scope of practices across a variety of countries including Mexico, the United Kingdom, Saudi Arabia, Ireland and a number of others. They include an overview of neuropsychological assessment services, case management, and systems of care for both children and adults. In

addition, an outline of one of the research studies directed by the International Initiative for Traumatic Brain Injury (InTBIR), which is designed to improve clinical outcomes and lessen the global burden of TBI by 2020, is represented.

The Collaborative REsearch on ACute Traumatic brain Injury in intensiVe care medicine in Europe (CREACTIVE), is an observational study that will involve approximately 100 intensive care units to evaluate the effectiveness of clinical management strategies in seven countries: Cyprus, Greece, Hungary, Israel, Italy, Poland, and Slovenia.

This edition also reflects a revised format for the literature review section of the BIP, one that more closely matches the books or articles reviewed to the unique focus of the edition. Dr. Jim Malec graciously served as the literature reviewer for this edition. The featured book is Traumatic Brain Injury: Rehabilitation for Everyday Adaptive Living (2nd Edition) by Australian authors Jennie Ponsford, Sue Sloan, and Pamela Snow.

Many of our readers work or consult across several countries or have joint research endeavors. As we live in an increasingly internationally-connected world, I hope you find this edition enlightening and informative as well as inspiring to future international collaborative partnerships. I again want to again thank Chris MacDonell and Dr. Fofi Constantinidou for the selected authors and contributions as they continue to help us keep a pulse on our community and colleagues across the globe.

Debra Braunling-McMorrow, PhD

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Services range from intensive inpatient neuro-rehabilitation and transitional community re-entry services to long term supported living services. Restore Neurobehavioral Center, located in a suburb north of Atlanta, is the site of our inpatient post acute neuro-rehabilitation program as well as one of our supported living sites. We operate two other community living sites, Restore-Lilburn (GA) and Restore-Ragland (AL).

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guest editors’ message

Dr. Fofi Constantinidou

Christine MacDonell

When we were asked to co-edit this international edition of Brain Injury Professional there was little chance we would say no! We have had the distinct honor of working together on many projects and both of us have a passion on high quality services for those with ABI. Both of us work extensively outside the United States and have the distinct privilege of working with a variety of providers who serve the individuals of all ages with ABI and along the continuum of care.

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BRAIN INJURY PROFESSIONAL

This special international issue of the BIP highlights a variety of service delivery models around the globe. Each of the models comes with strengths and weaknesses and it is influenced by historical, philosophical, political, and financial factors that shape rehabilitation practices in their perspective countries. However, the articles permeate the dedication of these providers to enhance the lives of those they serve. Our authors come from the UK, Ireland, Saudi Arabia, Ireland, Mexico, Italy, Cyprus, Greece, Hungary, Israel, Poland, and Slovenia. Dr. Andrew Bateman writes about holistic rehabilitation and the philosophy of the Oliver Zangwill Center, where as Cathy Johnson, also from the UK, provides information about case management and how it is influenced by the UK national health care system.

Barbara O’Connell from Ireland presents a successful model of community-based rehabilitation and Dr. Ahmed M. AboAbat discusses the Saudi Arabia perspective on ABI rehabilitation and challenges faced by the developing field of neurorehabilitation in his country. Dr. Arturo E. Pichardo and Dra. Erika Enriquez Elizalde provide their perspectives, in the rehabilitation of pediatric patients in Teleton Mexico.

Through these articles it is clear that no matter where one lives, the desire to have individuals with ABI included and participating in society and their life roles is paramount to rehabilitation providers. It crosses culture and diversity issues. It makes the world a smaller place for rehabilitation providers to exchange ideas and create learning and growth opportunities.

Undoubtedly, translational research can influence service delivery (e.g., evidence based practice). Service delivery in ABI begins at the emergency scene and continues in the emergency room, intensive care unit, neurorehabilitation floor, and proceeds through the various acute and post acute, inpatient, outpatient, and community

rehabilitation phases. The effectiveness of the early stages of trauma management has contributed significantly to the increase of survival rates and reduction of morbidity.

The European Union through its last funding cycle (the 7th Framework Program) has invested on multinational, multimillion euro projects for developing uniformed measures in ICU patient monitoring.

As indicated in the article by Dr. Guido Bertolini and associates, the CREACTIVE project includes over 100 ICUS from seven European counties (Cyprus, Greece, Hungary, Israel, Italy, Poland, and Slovenia) and truly offers a framework for cross-border, longitudinal collaboration.

This significant research funding is a direct result of the International Initiative for Traumatic Brain Injury (InTBIR), a consortium of three major funding agencies (the European Commission’s Health Directorate, the NIH’s National Institute of Neurological Disorders and Stroke, and the Canadian Institutes of Health Research Institute of Neurosciences, Mental Health and Addiction), which opted to align their national programs to accelerate progress in TBI research. Within this common endeavor, the three agencies have independently launched a number of funding calls focused on basic and clinical TBI research, for a total investment of about US$90 million. Through these efforts, the EU, Canada, and the NIH have opened their borders, thus reducing the national boundaries even further and fostering opportunities for collaboration across continents.

We hope that this issue crosses some of the geographic boundaries and what you read tweaks your interest to reach out and learn and grow together with the aim to always improve our services for individuals with ABI. Fofi Constantinidou Christine MacDonell

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

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

Chief Editor Nathan D. Zasler, MD

www.Tree-of-Life.com 1-888-886-5462 • Fax 804-346-1956 Administrative Offices BRAIN INJURY PROFESSIONAL 7 3721 Westerre Parkway, Suite B • Richmond, Virginia 23233

On holistic neuropsychological rehabilitation: a perspective from Oliver Zangwill Centre

Andrew Bateman, PhD

Among the many challenges after brain injury, it is especially distressing that there is often poor provision for social, emotional and cognitive consequences, sometimes referred to as ‘hidden’ neuropsychological disabilities. These problems make it difficult for patients to identify their needs, or for those around them to discern what is needed. Injured individuals may be isolated and are often least able to advocate effectively for the help they need. It is often also very difficult to understand the variety of resources and agencies that may be able to help. There is much complexity to be faced by service providers because of the enormous variability of activity and ability to participate that people after brain injury present with. There is a need for support and compassion potentially for years beyond the initial injury (Bateman 2014). This short article aims to illustrate some of the ways we have been trying to tackle these issues at the Oliver Zangwill Centre in the UK. Several years after his brain injury 54 year old Malcolm was facing marital break down, and alienation from his adult children. He had unsuccessfully returned to work and was soon to have his work contract terminated. He was struggling to manage his finances; he was experiencing low mood, poor sleep and was beginning to have difficulties regulating alcohol intake.

Along the continuum of brain injury rehabilitation service types, one radical end is the approach provided by holistic intensive neuropsychological rehabilitation (HNR) programmes.

This clinical vignette might be a typical referral for an HNR programme because no one therapeutic approach will be sufficient to contain this complex array of problems caused by cognitive difficulties – in this case especially poor executive functions – specifically poor decision making, lack of planning, impulsivity and social difficulties caused by emotional and behavioural dysregulation.

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BRAIN INJURY PROFESSIONAL

In the Cathedral City of Ely, Cambridgeshire, UK a small community hospital is home to a rehab centre named after a former University of Cambridge Professor of Psychology. The Centre was named in honour of Zangwill, a peer of Luria, who was one of the first British Psychologists to write about the theories of psychology applied to rehabilitation. Founded in 1996 by Professor Barbara A. Wilson, the Oliver Zangwill Centre (OZC) provides a day-patient intensive rehabilitation programme to people from the locality, nationally and internationally - as part of the National Health Service in Cambridgeshire. The Centre was established from the outset as a collaboration between Health Service and academic colleagues at the Medical Research Council Cognition and Brain Sciences Unit. One of the advantages of this arrangement has been an ethos such that rehabilitation research has been one of the core functions of the team.

This has meant over the history of the Centre, out of this small corridor have emerged some important innovations and papers that have been influential in moving the discipline forward.

Oliver Zangwill Centre is part of the National Health Service (NHS). It receives funds from a range of sources including the local NHS, out-of-area NHS referrals, and also private (selffunded, or insurance) patients are admitted. Further funding is received from research and development initiatives in the NHS and charitable sectors.

Prof. Wilson opened the Centre following a sabbatical she spent in the USA where she was inspired by Prigatano’s service in Arizona. She returned to the UK determined to establish a place where the intertwined cognitive emotional and social consequences of brain injury are treated by psychologists, Occupational Therapists and Speech and Language Therapists in a therapeutic milieu approach. The hospitality shown to Prof. Wilson in the USA has also been a feature the Centre has tried to maintain, so that usually there is an international Visiting Scholar on sabbatical with

us. This has been very enriching for the team providing continual peer review as well as encouraging research collaborations. Arguably the outcomes of these placements are also worth celebrating – in the same way that we celebrate patient outcomes – such learning hopefully contributing to learning and service improvement of benefit to the scholar’s home community.

Since opening, the team has strived to define what is meant by the holistic approach. This is not as simple as lifting directly from Prigatano’s and Ben-Yishay’s texts and implementing verbatim, but rather reflecting on the work of these leaders in the field and translating the ideas to fit the culture and organisational environment of the UK’s health services.

The details of the OZC team’s approach have been described in a text Neuropsychological Rehabilitation Theory Therapy and Outcomes that was published by Wilson et al (2009). This book has been well received because it provides details of how the programme operates including templates for group sessions and policies, in addition to articulating a theoretical position.

Six core components of rehabilitation have been outlined by the OZC team, echoing Prigatano’s (1999) components – primarily a focus on functional, meaningful activity. Secondly, the role of the family as part of the rehabilitation programme who are recognised as (usually) being in need of support and education. The establishing of a temporary therapeutic community, a safe space among peers that enables discovery and rehearsal of strategies. This requires some careful engineering of space and timetables. One example is a shared space used by staff and clients alike for making coffee/refilling from the water cooler.

Rather than ‘staff room’ and ‘kitchen’ OZC’s common room affords those improvised conversations outside of formal therapy sessions. Fourth, Psychological therapy in the UK tends toward a Cognitive Behavioural Therapy approach, but because clinicians are likely to have diverse training programmes a range of ‘flavours’ of therapeutic stand point have been seen at OZC including emphases on Compassion Focussed Therapy (Ashworth Gracey and Gilbert 2012); Systemic Therapy (see Bowen, Yeates and Palmer 2010); and cognitive behavioural approaches (Wilson et al 2009). The important thing is that clients are encouraged work on questions of identity (“who am I now?”), adjustment, self-compassion and noticing their own fluctuating emotions. Fifth, Cognitive assessment and rehabilitation at OZC is tackled mostly from a compensatory approach. For example it is more likely that rehab time will be spent in training in enabling use of a date-book, a smart phone and tablet PC than any time spent on cognitive remediation exercises – it’s not that exercises are banned – it’s just that we have found that a focus on finding the correct strategy is worth the investment. Finally, (sixth) at OZC a great value is put on developing at a Shared Understanding. This core component refers to the procedures to ensure that each member of the interdisciplinary team’s stand points are represented in a single formulation about the patient.

This repeated checking of understanding from different theoretical stances – enables a rich debate about goals and plans of action for therapy between team members, and checking with the client and family that staff interpretation of client perspectives are accurate or at least evolving in the right direction. The language of formulation – a hypothesis about how the interacting issues are operating to describe the current situation – is a language that runs deep through all of the team’s thinking.

The rehabilitation programme has been revised since the

2009 book, it now runs over 18 weeks (it used to last 24 weeks).

Nonetheless the fundamental experience of clients attending OZC has remained similar – perhaps one metaphor is one that maybe something akin to attending college. A small group of 4 or 5 clients start in ‘cohorts’ and work together of the next 18 weeks. Clients stay in local bed and breakfast lodgings, hotels or a self-catering apartment. The programme starts for clients each day at 10am with a community meeting. Clients and staff gather (to build the therapeutic community) sharing out chores and talking about issues in the news or other items of interest.

The education work delivered to the small group (“cohort”) is themed, week by week on ‘understanding brain injury’; memory; executive functions; and communication and social cognition.

There is also during the first six weeks a major focus further assessment. During this intensive phase the cohort attend for four days per week and have a full timetable between 10am and 4pm.

The integration phase is much as was described in 2009, entails a further 12 weeks of just two days per week contact with staff, while the remainder of the week is hopefully an experience of testing out strategies in the home or vocational environment.

The contact during the two days is mainly 1:1 therapy with one session known as support group, led by the clients giving each other support and encouragement. One key source of evidence we turn to guide our work was the seminal review by Cicerone et al (2011).

In January 2014, a group of staff and other colleagues met to review the Centre’s research strategy: Building on past successes, we have an aim to continue to design assessments, innovate interventions and evaluate outcomes for people with long term neurological conditions. Current priorities concern i) early triaging to target resources to those most at risk of developing significant emotional problems – preventing and managing complexity; ii) proportionate and efficient delivery of assessment and therapy; iii). Technology to support management of cognitive physical and emotional problems in day to day life; iv) translating evidence based interventions into supported self-management materials.

Three short examples will now follow that illustrate some of the progress made recently.

When thinking about outcomes this often conjures the idea of a score on a given scale. However the OZC team of clinicians reflecting on these scores often find that the tests have not really captured the story of the patient. Wilson Winegardner and Ashworth (2014) published a collection of narratives – written by the patients with interspersed commentaries by these three Clinical Psychologists. This volume illustrates the diversity and depth of individual experiences of brain injury. For example one of the contributers to this book, a young woman called Nat, a survivor of a significant intracerebral haemorrhage has gone on to talk to the press about her experience of attending the rehabilitation programme. A recent newspaper article extract reads as follows: “It’s a wonderful place where you get to meet other people who have acquired brain injury,” she says. “It was just really lovely to talk to people that have had similar experiences, and to not feel on my own.”

Nat completed an 18-week programme at the OZC, which taught her not only about how the brain works, but also strategies to help her keep well....

As part of her therapy, Nat drew a phoenix: colourful and dramatic, it has now become OZC’s logo. “I’m very proud of that,” she BRAIN INJURY PROFESSIONAL

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says. “I wanted to create an image, and I just thought well, a phoenix rising from the ashes will sum up my journey really, because I’ve come from a really dark place into a more hopeful place. And I wanted to have it full of colour, because the phoenix has so much life - it’s just had a bit of a difficult journey.”

This vignette illustrates the point that the Centre is interested in a highly individualised outcome – here we gather that Nat has developed a new understanding of herself achieved in part through artwork, and the psychologically meaningful image of a phoenix – seems so pertinent to Nat. The OZC team is interested in standardised measures. As outlined in Wilson et al (2009), we consider it important to link the assessment and therapy to models to enable reviewing of our work in the context of peer reviewed research. One of the teams’ major strands of work has been in the measurement and rehabilitation of Executive Function problems. With inspiration from Donald Stuss’ concepts about the nature of frontal lobe functions (Stuss 2011), the Dysexecutive Function Questionnaire (DEX) from the Pearson published BADS test battery (Wilson, et al 1996) has been examined using Rasch techniques. Simblett and Bateman (2011) demonstrated the need to revise the original questionnaire, – A DEX-R scale – not yet published – was constructed to provide a symptom checklist that gives a balanced number of items for each of the putative frontal lobe symptom clusters. The scale has been subjected to validation assessment with stroke patients. Interestingly Brazilian visiting scholar Fabricia Loschiavo translated the DEX-R into Portuguese and used it to assess patients with Bipolar disorder in the psychiatric clinic in her home City of Minas Gerais. She found that the tool could detect differences between BiPolar-type 1 and type 2 patients – type 1 exhibiting greater difficulties in the functions related to orbitofrontal functions (metacognitive, social and self-regulation symptoms). These findings provided a foundation for further work examining the potential role of neuropsychological rehabilitation in this patient group (Loschiavo et al 2013). This is an exciting development from the point of view of the OZC team to find that the development work done with patients with acquired brain injury may have broader applicability.

Sara Simblett recently completed her PhD at the Dept of Psychiatry University of Cambridge, on the subject of self-help and technology. She undertook clinical work with stroke patients living at home in Cambridgeshire, bringing forward the 10 BRAIN INJURY PROFESSIONAL

idea of computerised Cognitive Behavioural Therapy (see Simblett, Ring and Bateman, 2012). This approach is widely used to support self management of anxiety and depression in non-brain injured patients. Simblett has demonstrated in her thesis that some stroke patients could really benefit from this approach too, with reductions in anxiety and depression symptoms in a feasibility randomised controlled trial. Looking ahead, we see at OZC much potential for this type of approach. The team is working on developing a monitored self-assessment and self-help system that enables learning and revision of key topics (such as monitoring thoughts, goal setting, activity scheduling, and relaxation exercises).

In summary, some of the recent work that has been happening at Oliver Zangwill Centre has included neuropsychological rehabilitation outcomes research, international collaborations and very early steps towards establishing a computerised self-help platform that may be of interest to patient groups in addition to those with acquired brain injury. The challenges to being able to deliver compassionate and comprehensive rehabilitation are great, so there is a great need to keep working on research in this field.

References

Ashworth, F., Gracey, F. & Gilbert, P. Compassion Focused Therapy After Traumatic Brain Injury: Theoretical Foundations and A Case Illustration. Brain Impairment. 2012; 12(2):138-149.

Bateman (2014) Foreward to Cameron, M., and Marsh, S. (2014) Surviving is one thing, Living is Quite Another. The Ajahma Charitable Trust [http://www.publicserviceworks. com/] Bowen, C., Yeates, G and Palmer, S (2010) A Relational Approach to Rehabilitation: Thinking about Relationships after Brain Injury. Karnac Brain Injury Series.

Cicerone KD, Langenbahn DM, Braden C, Malec JF, Kalmar K, Fraas M, Felicetti T, Laatsch L, Harley JP, Bergquist T, Azulay J, Cantor J, Ashman T. Evidence based cognitive rehabilitation: updated review of the literature from 2003 through 2008.

Arch Phys Med Rehabil 2011;92 519-30.

Loschiavo, F. Q., Sediyama, C., Neves, F., Malloy-Diniz, L. F., & Bateman, A. (2013, June). Neuropsychological rehabilitation for bipolar disorder. Bipolar Disorders 15, 130-131 Prigatano, G. (1999) Principles of Neuropsychological Rehabilitation. Oxford University Press SK Simblett, A Bateman Dimensions of the Dysexecutive Questionnaire (DEX) examined using Rasch analysis Neuropsychological Rehabilitation 21 (1), 1-25 Simblett, S.K. Ring, H. and Bateman A (2011) Computerised cognitive behavioural therapy (cCBT): a possible treatment for mood disorders experienced by people with neurological conditions? Neuropsychological Rehabilitation 21(6)925-928 Stuss DT. 2011. Traumatic brain injury: relation to executive dysfunction and the frontal lobes. Current Opinion Neurology 24(6):584-9.

Wilson, B.A, Gracey,F. Evans,J.J and Bateman,A.(2009) Neuropsychological Rehabilitation: Theory, Models, Therapy and Outcome. Cambridge University Press; Wilson, B.A, Winegardner, J., and Ashworth F. (2014) Life After Brain Injury: Survivors’ Stories. Psychology Press Wilson, B.A, Alderman, N., Burgess, P.W., Emslie, H., Evans, J.J. (1996) Behavioural Assessment of Dysexecutive Syndrome.

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BRAIN INJURY CASE MANAGEMENT AND REHABILITATION IN THE UK Cathy Johnson

It is necessary to look at the development of brain injury case management and brain injury rehabilitation in the UK within the context of our National Health Service and Social Service systems and within our legal framework where Acts of Parliament are subsequently tested in the law courts. In the late 1980s, as interest in, and commitment to, rehabilitation grew in momentum case management began to be seen as a means of accessing necessary rehabilitation and a research project funded by the King’s Fund in London enabled the employment of an experienced therapist as a case manager. She was able to direct her clients to the available services for treatment but access to treatment remained limited within the NHS. Since then, brain injury case management has developed and grown, we have our own professional body with guideline for competencies and standards. The British Association of Brain Injury Case Managers (BABICM) has been a powerful influence not only on the development and provision of rehabilitation services but also on national policies with regard to the long term management of people who have had brain injuries.

This has been done outside our statutory provisions in health and social care so that case managers (we also now have case managers for other disabilities and injuries represented by CMSUK) are usually funded through either compensation claims following accidents or negligence, or by individuals paying privately for such support. Case managers take on substantial responsibilities without having statutory authority to back them up and need to cross refer to statutory services when such authority or indeed such services are needed. And as a result, brain injury case management has only been available to those who can blame someone else for their injury, or in very rare cases where the NHS has been willing to fund case management involvement.

That said, case management has become an integral part of rehabilitation and long term management for brain injury in the UK in the past 20 years. I’ve been involved in this process since 12 BRAIN INJURY PROFESSIONAL

those heady days of the 1980s and have run a brain injury case management service since 1995. In this short article I would like to briefly review some of the ways case management has influenced the development of services in this area and perhaps to look at some of the issues we face in the future.

Access to Rehabilitation As I’ve noted, access to statutory rehabilitation was initially limited. Independent rehabilitation services were wide spread and in general did not provide community follow up; clients “fell off the back of the rehabilitation lorry”. Case managers also saw that rehabilitation didn’t have to take place in a residential setting, and began to develop bespoke services in the community, bringing therapists and psychologists into peoples’ homes to provide the necessary physical and functional rehabilitation. We also realised that therapy could, with training, be put into action by support workers and that therapeutic activities could then take place daily or several times a day. Access to rehabilitation therefore improved, as did outcomes. Case managers also intervened to ensure that those who did need residential services were appropriately referred and discharge plans were made and implemented. Providing rehabilitation in the community means that input can be as intensive or as little as is necessary, regular reviews can result in changing input quickly to meet specific needs and activities of daily living can be relearned and practised in a familiar environment.

Financial Management The Court of Protection, originally established in the Middle Ages, has, among its many other duties, the responsibility, through the Office of the Public Guardian (www.justice.gov.uk/about/opg. htm), of managing the financial affairs of many of those who have had a brain injury and received substantial compensation where

they have been deemed to “lack capacity” to manage money.

When case management began to develop in the UK the person who had day to day authority (the “receiver”) for managing individual funds was usually a family member. Case managers wrote an article for the then Master (now senior Judge) of the Court of Protection, outlining the problems of such an approach and asked for professionals to take on this role. It is now the usual practice not only to have a professional financial “deputy” (the term “receiver” was changed following the 2005 Mental Capacity Act), but also to have the costs of such support included in compensation claims where appropriate.

Education If people working with and representing someone who has had a brain injury have an understanding of brain injury and its long term effects not only on the individual, but their families will also be better able to ensure that the individual gets the services and resources which they need. If family members and people who have had a brain injury themselves have a better understanding of the problems they face, and will face in the future as a result of that injury, they will be better prepared and better able to manage the consequences of the injury. To that end, case managers have been involved in providing information and advice to the brain injured individual and their family as well as developing conferences, courses, and one to one training for other professionals.

Long Term Support Brain injury leads to long term disability. Case management doesn’t stop after rehabilitation, but continues into the long term to provide the support and services needed by each individual. As a result, case managers in the UK are often involved in the practical aspects of managing every aspect of someone’s life in the future including the purchase, adaptation and management of property, purchasing suitable transport, organising holidays, advising when relationships break down or indeed begin, ensuring children are cared for and accessing leisure and vocational activities; the list is endless. Case managers become an integral part of their client’s life, often their most stable and long standing contact, their advocate and guide. Such continuity is unavailable in our statutory system where turnover of staff, changes in service provision and indeed changes in legal responsibilities have meant that many individuals who need support fall outside the system.

Future Challenges In the past two decades case managers have had to adapt to changes in social legislation in order to continue to provide services to their clients. We are now more constrained by legislation which affects everyone in the social care sector and have had to develop our working practices to utilise the resources available through the statutory service sector. This has meant that the practice of case management has changed. We now have more paperwork to complete: we need to document our activities more carefully and diligently; we need to risk assess, goal plan, review and justify our actions more than ever before. As a result, the costs of case management have increased and those professionals who came into case management to avoid paperwork have fallen by the wayside!

However, the success of case management, its growth as a service and the increase in case management costs has led to higher levels of scrutiny – a case manager neglects paperwork at their peril!

We are currently faced on a daily basis with contradictory poli-

cies and ideology (e.g. safeguarding v. personalisation; minimising risk v. deprivation of liberty). The UK BABICM has recently contributed to a review of the 2005 Mental Capacity Act. This act has had a profound impact on the way we work with our clients, and will continue to do so as judges interpret the act in individual cases and set precedents that we all have to work with. We seem to be on a moving and unpredictable platform, but these changes force us to put our clients’ needs and rights at the forefront of our practice and enable us to challenge decisions where we feel that our clients have not been best served. We can call Best Interest Meetings to include all those involved in making decisions for and about individual clients. We have earned the right to meet and work with statutory services in the best interests of our clients and have negotiated joint funding packages in order to maximise the use of compensation funds. We are becoming recognised as a profession and are respected for our opinions.

Age is one of many challenges. The clients who I began to work with in the 1990s are now aging, as are their parents and families. Those who survive brain injury, like the rest of the population, are living longer and services have not yet been developed to manage this. I practised as a social worker from 1975 to 1990 and was regularly faced with adults with learning needs who only became known to social services when their parents passed away. While we now have a better knowledge and record of support needs for learning disability, I am aware of families who, after a compensation settlement, have eschewed external support to care for their injured son, daughter or spouse themselves. These carers may deteriorate mentally and physically over time and will eventually pass away. Who then will take responsibility for the brain injured person? Who will make the necessary day to day decisions? Who will provide support during a period of bereavement and change? There are no specialist facilities for elderly brain injured people, and while some long term services continue to provide a home and support into old age, others are not registered to do, so and I’m concerned that there will be a cut off point where clients will have to be moved from their long term home into an elderly care home.

Longevity also affects access to funding and resources. Social Services and the NHS are cutting back financially, and no longer provide the breadth and depth of services which were available only recently. This trend is unlikely to reverse. Support and rehabilitation may therefore be more difficult to procure in the future, particularly to maintain people in their own homes. We already have a financial limit on how much can be spent by the state on supporting someone in their own home before they are expected to move into residential care. I regularly see very physically disabled people being expected to cope with three 30 minutes care visits every day, when case managers are recommending several hours of daily input. Money from compensation is finite, and may run out if people survive beyond their expected age, if the compensation has been limited, there has been inappropriate expenditure or if interest rates tumble long term. In that event, the “Saville Row” suit of care and support may turn into a second hand suit from “Oxfam” (thrift/charity shop). Case managers need to be aware of the costs of the services they are providing and to work closely with the deputies who manage the money.

Brain Injury case managers, out of all the services involved in working with individuals who have had a brain injury, have been able to follow the progress of their clients across the years, maintaining a constant presence in their lives, when other professions BRAIN INJURY PROFESSIONAL

13

dip in and out from time to time. This continuity of support is unique in both the independent and the statutory health and social services sectors in the UK. It provides a model of care and support which works in the long term and which can provide timely and appropriate responses to changing needs across the decades.

References

Mental Capacity Act 2007 Loughlin v Singh 19/6/2013 P v Cheshire West March 2014

ABOUT THE AUTHORS

Cathy Johnson and her husband Dr. Neil Brooks, are the business owners and company directors of Rehab Without Walls located in Milton Keynes in the United Kingdom. The company was established in 1995 to help people to achieve a stable, productive, high quality life in the community.

Together, Cathy and Neil are responsible for managing, supervising and advising a team of case managers. As part of their quality assurance procedures, they both lend their considerable expertise in their respective fields of neuropsychology and case management to checking and editing case management documentation. In addition to their case management services, they provide expert reports to the Court for both Claimants and Defendants in civil litigation. They provide reports in the areas of neuropsychology, rehabilitation needs and care and case management.

Canoeing at Vinland’s main campus in Loretto, Minnesota

drug & alcohol treatment for adults with disabilities Vinland Center provides drug and alcohol treatment for adults with cognitive disabilities, including traumatic brain injury, fetal alcohol spectrum disorder and learning disabilities. We make all possible accommodations for cognitive deficits and individual learning styles.

Located in Loretto, Minnesota — just 20 miles west of Minneapolis.

(763)479-3555 • VinlandCenter.org 14 BRAIN INJURY PROFESSIONAL

An Irish Perspective ABI Ireland Building Robust Community Based Neuro-Rehabilitation Services & Supports

Barbara O’Connell

Background

Acquired Brain Injury (ABI) is a leading cause of death and disability in Ireland1-3. The life-long personal, economic, and societal cost and the need for rehabilitation are undocumented in Ireland, at a population level. There is no government register or database of people with an ABI, resulting in imprecise and underestimations of incidence and prevalence of the condition.

Ireland’s one post-acute rehabilitation facility, the National Rehabilitation Hospital (NRH) in Dublin, has just 110 inpatient beds for the country’s entire population of 4.5 million; just 40 beds are allocated for cases of ABI. This results in significant numbers of people discharged back to the community, family homes, nursing homes and other inappropriate settings. People in Ireland with an ABI have not been identified as a defined group who requiring specialist neuro-rehabilitation services resulting in lack of designated funding to meet identified ABI needs. Funding to support this population in the community comes from the physical and sensory disability revenue stream, one of three available governmental streams. ABI is in this category rather than mental health or intellectual disability. It was against this background that Acquired Brain Injury Ireland (ABI Ireland) a not-for-profit organisation was created in 2000 to respond to the unique needs of what were, and still are, a marginalised and forgotten group.

ABI Ireland’s Mission is “To enable people with Acquired Brain Injury to live an independent life in the community, by providing and maintaining a supportive living environment”

Incidence and prevalence

Despite differences in criteria used to define TBI, most incident rates (hospitalised and fatal) were in the range of 150-300 per 100,000, with an overall average incident rate of 235/100,0005.

The prevalence rate of TBI in the general population includes not just new diagnoses, but the total number of people with TBI in the population at any one time, (including those with TBI sequelae such as impairment, activity limitation, and restriction of participation.) Few studies internationally have attempted to document the level of TBI and its consequences in the communi16 BRAIN INJURY PROFESSIONAL

ty, and there is little consistency in terms of definition of severity and duration of distribution. One Danish study6 conservatively estimated the population prevalence at 317/100,000 (only those precluded from working were included), however a more realistic estimate from the US7 (which includes related impairment and disability) is 1893/100,000 (approximately 2%) and from the UK (among working adults under 65) is 1200/100,0008.

If these estimates are applied to the Irish population, there are 34,890 people of working age and 80,000 individuals in the general population living with TBI related impairment or disability However, this is likely to be a significant underestimation of the true prevalence.

In 2006, research found the prevalence of self-reported stroke for the general population in Ireland is 100/100,000 or 500/100,000 for those over 6510. For those who survive, only half make a complete recovery. Many are left with significant disability including hemiparesis (48%), inability to walk (22%), need for help with activities of daily living (24-53%), clinical depression (32%), and cognitive impairment (33%)2. It is estimated that there are approximately 30,000 people living with serious consequences of stroke in Ireland2. Therefore, there are currently at least 127,894 people living with the sequelae of ABI in Ireland today. ABI results in physical, communicative, behavioural, emotional and cognitive problems that can affect every aspect of the individual’s and their families’ lives.

In essence Ireland urgently needed established mechanisms whereby everyone with symptomatic ABI can access the services they need as and when they need it; an appropriate continuum of care and rehabilitation. Mechanisms reflected in the BSRM Best Practice Guidelines, state: • People with an ABI have access to specialist services • There is a clear rehabilitation pathway with a continuum of care • People with an ABI may require different services at different times • People with an ABI may require multiple services • Specialist support for the family is an essential component of rehabilitation • Services should be co-ordinated and integrated

•

People should have access to life long support if needed (British Society Rehabilitation Medicine, 2004; NSF for Long term Conditions 2005)

As neurological recovery following ABI occurs over an extended period of many months or years, fundamental to any provision of services is the appreciation that different people with ABI need different input at different stages in their recovery. In 2011 the ‘National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland 2011 – 2015’ was published. A clinical lead was appointed but as yet in 2014 there is still no implementation plan.

Acquired Brain Injury Ireland

ABI Ireland was born out of the desperation and founded in by 2000 Barbara and Maurice O’Connell in response to their brother Peter Bradley. Following a hospital admission the only place for Peter to live (then aged 42) with an ABI, was a locked ward of a nursing home for people with dementia. The solution they found was to establish a specialist organisation with expertise in ABI and develop it in collaboration with existing public community services; to offer them an appropriate and effective model of service delivery. ABI Ireland began working with the national government, through the Health Service Executive (HSE), to assist with their locally identified ABI needs. Services were then formally commissioned by the HSE. For Peter and two other men, similarly inappropriately placed, a new residential rehabilitation model of ABI service was developed. A “home away from home” in natural communities.

This service is now available in 15 communities across Ireland spanning all four HSE Regions.

Gene, a 47 year old former electrical engineer, was destined to a life in a nursing home, following his discharge from the NRH. While without any physical or sensory impairment, he required constant supervision which his wife was unable to provide. Once again, following a successful pilot programme, ABI Ireland’s staff and management in partnership with the HSE developed a new Home and Community-Outreach model of rehabilitation. A trained rehabilitation assistant under clinical supervision worked with Gene 35 hours per week. This enabled him to remain in his own home, reducing and phasing out the service over six months as he achieved his rehabilitation goals. Today, ABI Ireland has 35 national clinically supervised in Home and Community-Outreach services.

In 2000, ABI Ireland started out with a budget of €218,000, nine staff and one service. Today, the budget stands at €12 million with 260 staff across Ireland and 116 services. ABI Ireland figure 1

Current ABI Ireland Services

was CARF Accredited in 2006, 2009, and 2013. This international recognition places our organisation amongst American, Canadian and European leaders in the field of ABI rehabilitation.

CARF accreditation involves external peer review and reassures clients and their families, as well as the HSE, that the services that they access are of the highest possible standard and quality.

Core services include: • Residential Rehabilitation • Transitional Living • Home & Community Rehabilitation (includes outreach) • Case Management • Day Resource/Clubhouse services and facilities • Work4U clinical assessment and work placement service run by Occupational Therapists • Family Support Services (includes therapy groups, education and general support) • Psychological Services (includes assessment, behavioural programmes, counselling and cognitive rehabilitation cognitive behavioural therapy and parenting programmes) • Home Liaison/Social Work (includes counselling, mediation, community access, grief and loss support groups • ABI Awareness Information (includes Training & Education Programmes both internal & external) All services are supported by the Clinical Neuro-Rehabilitation Teams In order to establish that our rehabilitation programmes were having tangible outcomes, we undertook an ongoing study measuring four listed outcome measures to all with an ABI who used the service. The core Outcomes measured over 3 years were: 1. Neurodisability (Mayo-Portland Adaptability Index), 2. Mental Health (Hospital Anxiety and Depression Scale), 3. Community Integration (Community Integration Questionnaire), and 4. Quality of Life (World Health Organisation QoL scale) The results are to be published which show ABI Ireland services are demonstrably effective for people who engage in neurorehabilitation, and that Different outcomes (QoL, Neuro-disability, mental health, community integration) may respond to neuro-rehabilitation at different time points in the rehabilitative milieu that may be largely independent of the type of injury or the age of the client.

The Model - Innovative, Collaborative, and Value for Money

The structure - Regional Hubs ABI Ireland has four regional hubs across the Republic of Ireland. Each hub is led by a Regional Manager and supported by an inter-disciplinary team of neuro-rehabilitation clinicians and specialists who work collaboratively with the HSE. These hubs are designed to respond efficiently and effectively to identify local need. The teams carry out assessments, and provide rehabilitation and ongoing evaluation. They supervise and train staff and provide ongoing regional support for ABI Ireland services.

In 2013, we launched an Irish version of the programme of Certified Brain Injury Specialist Training (CBIS) which ABI Ireland BRAIN INJURY PROFESSIONAL

17

figure 2

Rehabilitation Care Pathway for People with ABI

ABI Irelands Strategic Priorities 2012-15

figure 3

VISION Acute Hospital

Post Acute Rehabilitation

People with neuro-rehabilitation needs and their families receive the highest quality personalised services and supports, as and when they need them.

HSE Primary Care Teams

Community Neurological ABI Case Manager specific Rehabilitation Services ONE POINT OF CONTACT • Information & Education • Social • Case Management • Assisted Living • Community Rehabilitation Neurological Geographical Rehabilitation Teams • Transitional Client and family/carer • Respite Assessment Service • Rehabilitation Training Evaluation and Follow Up • Vocational Training Neuro Rehabilitation Neuro Psychology Home Liaison/Social Woker Speech and Language Therapy Physiotherapy Key Worker Rehabilitation Assistants Others

Service development & delivery

Other Disability and Mainstream Services and Supports • Home • Work • Health • Leisure • Education/Training • Entitlement

Awareness, education & training

Research & evidence base

Advocacy

Organisation effectiveness: Enablers – Finance, HR, IT, Marketing, Alliances, Communication, Quality (underpins all) The Strategic Objectives of ABI Ireland, 2012-2015 are as follows: 1. Ensure core services are available in each region 2. Develop new services to meet identified needs in related areas 3. Greater national awareness of Acquired Brain Injury and its effects 4. Improve and inform service delivery through research and collation of evidence

has developed in collaboration with the USA based Academy of Certified Brain Injury Specialists (ACBIS), winning a prestigious Irish training award in 2014.

ABI Ireland staff work to ensure people affected by an ABI have access to appropriate services in a timely and effective manner. To achieve this goal, there are a number of key elements that must be in place, including the Case Manager. They act as single point of contact, providing a clear pathway from acute settings, through post- acute, and into community rehabilitation service.

The Case Managers role includes: • Linking with the HSE Primary Care Team (PCT) – a first point of contact identifying ABI patients in hospital and acting as a bridge between them and the community where they are being discharged • Aiming to reduce the number of people with an ABI who ‘fall through the net’ by providing appropriate services and support • Ongoing case management: a service monitoring role as part of the team.

Core team members include: Case/Community/Local Services Manager, Neuro-Psychologist, Rehabilitation Assistants (R/A), Neuro-Rehab Occupational Therapy, Specialist Social Work/Family Liaison, Speech & Language Therapist and Physiotherapists.

In cases where the client requires additional services and/or supports ABI Ireland networks with acute, post-acute and community services to address these needs. This is particularly essential when there is duel or multiple diagnoses which may include mental health difficulties, alcohol or drug addictions.

Aspiring to Excellence & Planning for the Future Following an internal and external review of ABI Irelands structure and services, a new Strategic Plan 2012-15 was drawn up to ensure our organisation meets current and future ABI needs. The strategy is based on four pillars: Service Development & Delivery, Awareness, Education & Training, Research & Evidence Base & Advocacy.

ABI is a complex disability affecting not only individuals, but whole families. The key to appropriate rehabilitation is an ABI specific package of care and rehabilitation across a lifetime in a timely manner. ABI Ireland, working in partnership with its stakeholders, has proved that when this continuum of care and 18 BRAIN INJURY PROFESSIONAL

5. Work with others to ensure national policy on Neuro-rehabilitation is implemented 6. Ensure the necessary resources, capacity and structures are in place 7. Build strategic alliances and collaboration with key stakeholders 8. Deliver services, systems and processes to the highest possible standard of quality

rehabilitation is in place constantly and consistently, it demonstrates positive outcomes for the person with an ABI and their families and carier givers value for money to stakeholders and makes a real difference in the community.

References 1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

Department of Health and Children. Health Statistics Report. Dublin, 2005.

Irish Heart Foundation and Department of Health and Children. National Audit of Stroke Care. Dublin: IHF and DoHC, 2008.

Traumatic Brain Injury Research Group. National report on traumatic brain injury in the republic of Ireland. Dublin, 2008.

Lanoo E, Brusselmans W, Van Eynde L, Van Laere M, Stevens J. Epidemiology of acquired brain injury (ABI) in adults: prevalence of long-term disabilities and the resulting needs for ongoing care in the region of Flanders, Belgium. Brain Injury 2004;18:203-11.

Tagliaferri F, Compagnone C, Korsic M, Servadei F, Kraus J. A systematic review of brain injury epidemiology in Europe. Acta Neurochir (Wein) 2006;148:255-68.

Engberg A. Severe Traumatic Brain Injury - epidemiology, external causes, prevention and rehabilitation of mental and physical sequelae. Acta Neurol Scand 1995;92s:9-151.

Langlois J, Rutland-Brown W, Thomas K. Traumatic Brain injury in the United States: emergency department visits, hospitalisations and deaths. Atlanta: Centres for Disease Control and Prevention, National Center for Injury Prevention and Control. 2004.

Department of Health. The National Service Framework for Long-Term Conditions. London: Department of Health, 2005.

Feigin V, Lawes C, Bennett D, Anderson C. Stroke Epidemiology” a review of populationbased studies of incidence, prevalence, and case-fatality in the late 20th century. Lancet Neurology 2003;2:43-53.

Central Statistics Office. Health Status and Health Service Utilisation. Quarterly National Household Survey. Quarter 3. Dublin: Central Statistics Office, 2007.

MacDonald B, Cockerell O, Sander W, Shorvon S. The incidence and lifetime prevalence of neurological disorders in a prospective community-based study in the UK. 2000 Brain;123:665-76. 1999; 282(974-983).

about the author

Barbara O’Connell is an Occupational Therapist by profession with an MBA in Health Services Management UCD/RCSI. Across her career she has worked directly with clients and staff in Adult and Adolescent Psychiatry, Intellectual Disability, and for many years as a manager in the National Rehabilitation Hospital, pioneering the design of, implementation and management of social re-integration programmes for people with ABI, bridging the identified gap between post acute services and return to the community. She is a sister of Peter Bradley, who inspired the foundation of Acquired Brain Injury Ireland and has direct experience of living with a person with ABI. She currently serves as the Chief Executive Officer of ABI Ireland.

conferences 2014

september 24-26 – Brain Injury Association of Canada, Ottawa, Ontario, Canada.

For more information, visit www.biac-aclc.ca

13-16 – AAPM&R 2014 Annual Assembly, San Diego, California. For more information, visit www.aapmr.org 2015

October 7-11 – 91st Annual ACRM Conference, Toronto, Ontario, Canada. For more information, visit www.acrm.org 24-27 – American Association of Nurse Life Care Planners 2014 Annual Conference, Atlanta, Georgia. For more information, visit www. aanlcp.org 26-27 – 34th Annual Neurorehabilitation Conference on Traumatic Brain Injury, Stroke, and Other Neurological Disorders, Cambridge, Massachusetts. For more information, visit www.gettingbacktolife.com 27-30 – 25th Annual State of the States in Head Injury Meeting, Philadelphia, Pennsylvania. For more information, visit www.nashia.org

January 11-14 – 2015 Brain Injury Summit: A Meeting of the Minds, Vail, Colorado. For more information, visit www.braininjurysummit2015.org

November 8-9 – 35th Annual Neurorehabilitation Conference on Traumatic Brain Injury, Stroke, and Other Neurologic Disorders, Cambridge, Massachusetts. For more information, visit www.nashia.org/ www.gettingbacktolife.com 12-15 – National Academy of Neuropsychology 34th Annual Confe rence, Fajardo, Puerto Rico. For more information, please visit www. nanonline.org

May 5-7 – TBI-Challenge 2015, Helsinki, Finland. For more information, visit www.confedent.fi/tbi-challenge

April 15-17 – 39th Annual Williamsburg Conference - Brain Injury Rehabilitation: Practical Solutions to Real World Problems, Williamsburg, Virginia. For more information, visit www.tbiconferences.org 16-17 – Nebraska Brain Injury Conference, Kearney, Nebraska. For more information, visit www.biane.org 31-2 – NABIS 12th Annual Conference on Brain Injury, San Antonio, Texas. For more information, visit www.nabis.org

July TBD – Sick Kids Centre for Brain & Behavior Biennial Conference: Brain Injury in Children, Toronto, Ontario, Canada.

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

BRAIN INJURY PROFESSIONAL

19

TRAUMATIC BRAIN INJURY CONTINUUM OF CARE: THE SAUDI ARABIA PERSPECTIVE

Ahmed M. AboAbat, BScPT, MHA, PhD

20 BRAIN INJURY PROFESSIONAL

Saudi Arabia is the largest and fastest growing population in the Gulf Cooperation Council (GCC), with a population of over 29 million, of whom 20.3 million are Saudi nationals and an annual population growth rate of 2.7%3, the Saudi perspective might echo and impact that of some other states in the region.

MAGNITUDE AND CAUSED OF TBI IN SAUDI ARABIA TBI is a major public health problem in Saudi Arabia, though national data and research in the field is extremely limited and in its best has been from isolated institutional studies. AlMoutaery and Akhdar (1998) reported 80% of trauma related deaths in MOH to be due to road traffic accidents (RTA), with Figure 1

Mechanism of Injury Stratified by Age Groups7

80 70

Percentage

Traumatic Brain Injury (TBI), according to the World Health Organization (WHO), will exceed many diseases as a major cause of death and disability by the year 2020. With an estimated 10 million people affected annually by TBI, the burden of mortality and morbidity that this condition imposes on society makes TBI a pressing public health and medical problem1, resulting in a growing global emphasis on the urgent need for establishing well designed programs geared towards TBI prevention, management and rehabilitation. Saudi Arabia is no exception, especially with the Kingdom’s rapid urbanization and the vast development in construction, transportation, communication and changing lifestyles. This has lead to different types of health problems and phenomenal losses, among which TBI is eminent on the list, although largly unmeasured.

The Healthcare sector in the Kingdom of Saudi Arabia is primarily managed by: (i) the government with approximately 60% of all hospitals within the Kingdom being owned and operated by Ministry of Health (MOH); (ii) 9% by other Governmental Organizations such as The National Guard, Ministries of Defense and Aviation and the Royal Commission; (iii) 31% by the private sector. The supply of healthcare facilities struggles to keep pace with the burgeoning population, a situation recognized by the Government who have recently introduced initiatives to encourage matching the shortfall and boost healthcare services in the Kingdom2. This is epitomized in the Saudi healthcare budget for 2013 which reached $27.4 billion, representing a 15.45% increase from 2011, with further growth projections indicating the budget will reach $47.7 billion by 2017.

This paper will shed the light on the magnitude of trauma and TBI in Saudi Arabia, causes and risks, severity and outcome, available services, progress and challenges. Given that

60 50 40 30 20 10 0

>6

6-11.99 12-15.99 Age group (years)

16-18

Fall

Motorcycle

Pedestrian

Motor vehicle accident

Violence

Other

head and facial injuries accounting for 30% of injuries and 26% of deaths. They reported death rate of 17.4% due to TBI in Saudi Arabia compared to 8.3% in USA4. Another study involving 106 TBI inpatients under the age of 12 years in the Eastern Province of Saudi reported a death rate of 11.3% with RTA being the leading cause of TBI by 67% followed by fall from a height 22.5%5.

To the limits of the author’s knowledge, the largest epidemiological study about traumatic brain injury in Saudi Arabia was conducted at King Abdulaziz Medical City, which is considered the largest emergency trauma centers in Riyadh, the capital of Saudi Arabia. This study was conducted over a period of eight years (from 2001 to 2009) involving 3796 trauma inpatients 18 years or younger, of who 1219 patients (32.1%) suffered TBI. RTA was the commonest cause of injury (34.2%) followed by pedestrian injury (30.3%) and falls (28.4%). However, falls was the leading cause under six years compared to RTA in high school students (Figure 1). TBI severity was highest in the latter group who also had the highest mortality (20%)6.

Given the lack of national data, it is not possible to discuss TBI in Saudi Arabia without uncertainty. Nevertheless, in an attempt to estimate the magnitude of the problem, we will use the only related national data that was accessible to the writer which comes from the “Saudi Injuries & Accidents Prevention Program”; a program that was launched by MOH in 2011. According to the unpublished report of 20127, the number of emergency cases that was received in MOH hospitals was over 1.8 million, of which car accidents accounted for 10.7%, falls and accidental injuries 28.7%, burns 3.6%, whereas 47.2% were recorded as ‘others’. Taking into account that MOH accounts for 60% of the Saudi healthcare sector, we estimate a total of 3,056,820 emergency department visits in 2012. The Centers for Disease Control and Prevention (CDC) reported total combined rates for traumatic brain injury (TBI)-related emergency department (ED) visits hospitalizations in 2010 to be 823.7 per 100,000 which gives an estimate of nearly 25,179 individuals sustained TBI in Saudi Arabia in 20128. However, based on a global TBI incidence of 106 per 100,0001 the estimate raises to almost 31,000 whereas a higher rate similar to that reported in India9 of 150 per 100,000 will increase the estimated number of Saudi individuals who sustain TBI annually to almost 45,000. Using similar calculation of reported emergency death cases (Table 1)7 and a death rate as a results of TBI ranging from 11.3%4 to 26%7 of trauma related deaths in MOH hospitals, an estimate of 1,959 to 4,507 Saudi individuals have died as a result of TBI in 2012. table 1

portation with one person killed and four injured every hour10.

RTA is on the rise accounting for 4.7%, of all Saudi mortalities compared to less than 1.7% in Australia, England or America11.

Road traffic victims reportedly occupy a fifth of all patients at the MOH hospital in Saudi Arabia, whereas the majority of them require long-term rehabilitation as a result of disability12.

The Traffic Police reported 484,805 RTAs in 2010, resulting in 6,142 deaths and annual loss of up to 21 billion riyals. Available data suggests RTA to be the leading cause of TBI in Saudi Arabia, accounting for up to 67%5 compared to 14.3% as reported by the CDC18 and 44% in a European study13.

We believe that the following might be unique to Saudi Arabia and require special attention: (i) higher RTA rates during weekends due to higher traffic volume and the unofficial car races and “drifting” practiced by adolescents and young adults; (ii) higher RTA during the Muslim pilgrimage (Hajj) due to the increased volume of traffic14; (iii) although motorcycle are rarely used in Saudi Arabia due to the high temperatures, long summer and the affordability of fuel, three or four-wheelers (all-terrain vehicles “ATV”) are commonly used for leisure in the desert without abiding by safety laws and instructions. One such example is a study of 482 ATV users which reported a significant correlation between not using helmets with abnormal neuroimaging, hospital admissions, and overall worse TBI severity15.

PRE-HOSPITALAND EMERGENCY CARE The availability, accessibility and utilization of pre-hospital and emergency care are major determinants for survival and outcome in TBI9. In Saudi, the majority of serious RTAs occur on the intercity highways which explain the higher deaths rates (63%) despite the lower number of RTAs (Table 2). The limited availability of competent neurosurgeons and well equipped operating rooms to hospital in big cities might partly explain the higher intercity death rates and poor outcomes.

CONTINUITY OF CARE AND REHABILITATION SERVICES Although rehabilitation services have come a long way, the availability of intensive inpatient rehabilitation programs continues to be limited to a few major hospitals in Saudi. In fact, the Rehabilitation Hospital of King Fahad Medical City (RH-

Intercity

Mechanism of Injury Stratified by Age Groups7 Y 2008

Y 2009

Y 2010

Y 2011

Y 2012

Total deaths

46,720

44,308

46,292

44,793

44,670

Injury deaths (%)

8,761 (19%)

8,130 (18%)

8,355 (18%)

7,702 (17%)

10,402 (23%)

ROAD TRAFFIC ACCIDENTS AND TBI Road Traffic Accidents (RTA) is the leading cause of death in adolescents and young adults worldwide, with almost threequarters of road deaths occurring in developing countries. In Saudi Arabia, the motor vehicle is the main means of trans-

RTA Outcomes According to Place of Occurrence

table 2

In The City

Number

%

Number

%

RTA

415,910

46.18%

484,805

53.82%

Causality

15,239

44.04%

19,366

55.96%

Deaths

3,858

62.81%

2,284

37.19%

Brain Injury Patients Admitted at RH-KFMC from 2008-2013

table 3 Case Impairment

Count

Average age

Non-Traumatic

79

40.41

Traumatic Unspecified (blow to head)

79

29.18

Open Injury

18

30.19

Closed Injury

90

27.81

Other Brain

13

30.4

BRAIN INJURY PROFESSIONAL

21

Admission FIM Score and Average FIM Gain at Discharge

Figure 2 100

80

29.2

26.9

23.2

25.4

29.3

26.3

46.2

64.9

53.9

54.5

46.2

53.7

2008

2009

2010

2011

2012

2013

60

20

0

admission

discharge

KFMC) is the only acute CARF accredited governmental hospital that provides a holistic approach to TBI rehabilitation.

Over the past 6 years (2008-2013), 279 brain injury patients were admitted and rehabilitated at RH-KFMC (Table 3), whose functional status as measured by the Functional Independence Measure (FIM) score was 53.2 on admission, 79.9 on discharge and an average FIM change of 27 points (Figure 2) compared 58% 43%in USA respectively 43% 16 36% to 56.6, 87.7 and 31 points .

Saudi brain injured patients experience long waits before being admitted to rehabilitation facilities. This is partly attributed to the poor awareness of primary medical/surgical teams of the importance and availability of comprehensive inpatient rehabilitation services in one hand and the limited number of available inpatient rehabilitation beds in the other. This is epitomized by the long average onset date of 270.6 days of TBI patients admitted to RH-KFMC (Figure 3) compared to USA average of 19.7 days16. This delay in patients’ admission to specialized rehabilitation programs increase the risk of secondary complications such as contracture, pressure ulcers, joint stiffness, malnourishment and subsequently increasing the cost of TBI and considerably prolonging the rehabilitation process.

In 2005, a retrospective study of 15,548 patients involving

Average Onset Date of TBI patients admitted at RH-KFMC 2008-2013

Figure 3 350 300 250

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Average Length of Stay of TBI patients admitted at RH-KFMC 2008-2013

Figure 4

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22 BRAIN INJURY PROFESSIONAL

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patients from six Arab countries, reported 8.2% of these patients suffered at least one adverse event. Of these events, 83% were judged to be preventable, while about 30% were associated with patient death. Inadequate training and supervision of clinical staff or the failure to follow policies or protocols reportedly contributed to most events 17.

Despite the significant reduction in the average length of stay of TBI patients admitted at RH-KFMC from 123.8 days in 2008 to 52.4 days in 2013 (Figure 4); it remains far from the USA average of 18.7 days16. This prolonged length of stay could be attributed to: (i) the delayed admission to rehabilitation facilities and the resultant secondary complications; (ii) lack of continuity of care in other community based facilities which force rehabilitation facilities to play a major role in addressing such patient needs; (iii) challenges related to community inte-

90

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gration including public perception of disability, environmental barriers and the inaccessibility of public buildings, despite the fact that the Saudi Building Code (SBC) that have been published in 2007 clearly states the accessibility needs of disabled individuals18(iii). The significant emphasis on family and kinship among the Saudi population sometimes leads to overprotection and prolonged use of government services which is facilitated by the free Saudi healthcare. However, the strong 58% 43% 43% 36% expectation among Saudi families that they would provide personal care, or hire a caregiver, to assist their family member afflicted by injury or disease might have contributed to the fact that 96.9% of RH-KFMC inpatients were discharged home.

FINAL THOUGHTS AND RECOMMENDATIONS: Despite the paucity of national data, TBI remains a major public health problem in Saudi Arabia with striking impact and considerable losses to patients, their families, and to the nation as a whole. This then, requires systematic efforts at various levels towards prevention, management and rehabilitation including: 1. Establishing a National Registry System for neurotrauma that provides related information required for developing programs in prevention, management, rehabilitation and extended care services.

2. Implementing a widespread injury prevention to save lives and prevent disabilities focusing on road traffic accidents,

the leading causes of brain injuries in Saudi Arabia.

3. Optimizing TBI rehabilitation outcomes and reducing the average length of stay in intensive inpatient rehabilitation programs through: • Improving pre-hospital and emergency care and prevention of secondary complications.

• Increasing specialized rehabilitation inpatient capacity in the Kingdom.

• Facilitating and ensuring early referral to specialized rehabilitation programs.

• Improving the continuity of care in the community to reduce the burden on the healthcare systems.

REFERENCES 4.

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Hyder A, Wunderlich C, Puvanachandra P, Gururaj G, Kobusingye OC. The impact of traumatic brain injuries: A global perspective. NeuroRehabil 2007; 22:341-53.

Colliers International. Kingdom of Saudi Arabia. Healthcare Overview. Colliers International website 2012; www.colliers.com Central Department of Statistics and Information, Ministry of Economy and Planning, Saudi Arabia. Population and Housing Census Estimates for 2013. Available at: www. cdsi.gov.sa/english/ Al-Moutaery K, Akhdar F. Implications of road accidents in Saudi Arabia. Pan Arab J Neurosurg 1998; 2(2): 7-8 Kamal HM, Mardini AA and Bokhary MM Aly. Traumatic brain injury in pediatric age group; predictors of outcome in Pediatric Intensive Care Unit. Libyan J Med 2007; 2(2): 90-94 Alhabdan S1, Zamakhshary M, AlNaimi M, Mandora H, Alhamdan M, Al-Bedah K, AlEnazi S, Al-Habib A. Epidemiology of traumatic head injury inchildren and adolescents in a major traumacenter in Saudi Arabia: implications for injuryprevention. Ann Saudi Med. 2013; 33(1): 52-56.

Saudi Ministry of Health. MOH Health Statistics Year Book 2012. Table No. 16.3, page 159 & Table No. 29.1, page 239 (unpublished report).

The Centers for Disease Control and Prevention (CDC). Traumatic Brain Injury in the United States. CDC website. Accessed March 2014; www.cdc.gov/traumaticbraininjury/ get_the_facts.html.

Gururaj G, Kolluri S.V.R, Chandramouli B.A, Subbakrishna D.K and Kraus JF, “Traumatic Brain Injury”, National Institute of Mental Health &Neuro Sciences. Publication no. 61, Bangalore - 560029, India. 2005.

Al Turki YA. How can Saudi Arabia use the Decade of Action for Road Safety to catalyse road traffic injury prevention policy and interventions? Int J InjContrSafPromot. 2013 Sep. [Epub ahead of print] Barrimah I, Midhet F, Sharaf F. Epidemiology of Road Traffic Injuries in Qassim Region, Saudi Arabia: Consistency of Police and Health Data. Int J Health Sci (Qassim) 2012; 6(1): 31–41.

Ageli MM, Zaidan AM. Road Traffic Accidents in Saudi Arabia: An ARDL Approach and Multivariate Causality. International Journal of Economics and Finance 2013; 5 (7):26-31.

Majdan M, Mauritz W, Wilbacher I, Janciak I, Brazinova A, Rusnak M, Leitgeb J. Traumatic brain injuries caused by traffic accidents in five European countries: outcome and public health consequences. Eur J Public Health. 2013 Aug;23(4):682-7.

Al-Harthi AS, Al-Harbi M: Accidental Injuries During Muslim Pilgrimage. Saudi Med J 2001, 22(6): 523-5 Ganti L, Bodhit A, Daneshvar Y, Patel P, Pulvino C, Hatchitt K, Hoelle R, Peters K, Kuchibhotla S, Lottenberg L, Gabrielli A, Mazzuoccolo A, Elie-Turenne M, Falgiani T, Maerz P, Kharod S, Conroy L, Khalid H, Tyndall JA. Impact of Helmet Use in Traumatic Brain Injuries Associated with Recreational Vehicles. AdvPrev Med. 2013 Sep 25 [Epub ahead of print].

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 in 2000 – 2007. Am J Phys Med Rehabil. 2010 April ; 89(4): 265–278.

Wilson R, Michel P, Olsen F, GibberdR W, Vincent C, El-AssadyR, RasslanO, Qsous S, Macharia W, Sahel A, Whittaker S, Abdo-Ali M, LetaiefM, Ahmed N, Abdellatif A,LarizgoitiaI. Patient safety in developing countries: retrospective estimation of scale and nature of harm to patients inHospital. British Medical Journal 2012 (Online), 344, e832. Available at: http://ecommons.aku.edu/eastafrica_fhs_mc_paediatr_child_health/1 Saudi Building Code Team. The Saudi Building Code (SBC). Accessed March 2014; www.sbc.gov.sa

About the Author

Ahmed M. AboAbat, BScPT, MHA, PhD, is the Associate Executive Director of Patient Affairs at the King Fahad Medical City (KFMC) & serves as Director, Rehabilitation Hospital, KFMC in Riyadh in the Kingdom of Saudi Arabia. He can be reached by email: aaboabat@kfmc. med.sa.

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CREACTIVE A European endeavor to improve outcome of patients with Traumatic Brain Injury Authors: Guido Bertolini, Giulia Paci, Luca Antiga, Akos Csomos, Rafael Kaps, Isaac Lazar, Malgorzata Mikaszewska, Matteo Mondini, Nektaria Xirouchaki, Roberto Latini, Primoz Gradisek, Joanne Fleming, Theodoros Kyprianou Background

Traumatic Brain Injury (TBI) is an alteration in brain function, or other evidence of brain pathology, caused by an external force1. For many years, a myriad of epidemiological and clinical studies have documented the huge burden of TBI for patients, their relatives, and the whole of society, in terms of unexpected death, longlasting or permanent disability in previously healthy persons, diminished or even a sharp drop in quality of life, massive direct and enormous indirect costs2, 3. Nevertheless, TBI research has historically been neglected and underfunded4, thus it is not surprising that the therapeutic armamentarium to improve outcome of TBI patients is far from being satisfactory5.

Recently, however, the International Initiative for Traumatic Brain Injury (InTBIR) has been set up with the long term goal of improving the clinical outcomes of these patients and lessening the global burden of the disease by 2020. InTBIR is an unprecedented consortium of three major funding agencies (the European Commission’s Health Directorate, the NIH’s National Institute of Neurological Disorders and Stroke, and the Canadian Institutes of Health Research Institute of Neurosciences, Mental Health and Addiction), which opted to align their national programs to accelerate progress in TBI research. Within this common endeavor, the 24 BRAIN INJURY PROFESSIONAL

three agencies have independently launched a number of funding calls focused on basic and clinical TBI research, for a total investment of about US$90 million4.

Four major studies and a number of smaller projects have been funded and are now in the starting blocks: the Approaches and Decisions for Acute Pediatric TBI (ADAPT) study; the Collaborative European NeuroTrauma Effectiveness Research in TBI (CENTER-TBI); the Collaborative REsearch on ACute Traumatic brain Injury in intensiVe care medicine in Europe (CREACTIVE) study; the Transforming Research and Clinical Knowledge in Traumatic Brain Injury (TRACK-TBI) study. Despite differing in many ways, but being committed to render the resulting databases accessible to the research community, all these studies will collect at least the same core data, the so-called Common Data Elements (CDEs) [6-8], thus laying the foundations for a unique international research collaboration.

Here we present the protocol of CREACTIVE, an observational study that will involve about 100 intensive care units (ICUs) in seven countries: Cyprus, Greece, Hungary, Israel, Italy, Poland, and Slovenia. While mild TBI patients are variably managed in the different health services, most moderate and almost all severe TBI patients who manage to reach a hospital are admitted to an ICU. Although these patients represent only 20% of the total, they carry the main burden of the disease. Some permanent disability is estimated to occur in 10% of mild, 66% of moderate, and 100% of severe TBIs9-11. Estimated in-hospital mortality is <5% in mild TBI, while it increases to 21% in moderate, and 46% in severe

cases at six months12. Hence, the ICU is in an ideal position to adequately evaluate and monitor the bulk of the burden of the disease, identify and assess the most effective clinical interventions, and recognize excellence in TBI management.

Aims of the CREACTIVE study

The CREACTIVE project has several aims: 1) to better describe the epidemiology of moderate-to-severe TBI in the participating countries; 2) to establish centralized repositories of clinical data (CDEs+), biological samples (blood and derived fluids, cerebrospinal fluid) and clinical imaging data, to be exploited for prognostic purposes; 3) to build a prognostic model based on clinical and biological data to predict short- and long-term outcome; 4) to identify the most effective clinical interventions for optimally treating TBI patients; 5) to recognize the determinants of optimal vs. suboptimal performance.

Progress beyond the state-of-the-art Epidemiology of TBI

The existing PROSAFE network, recently established through EU funding (PHEA 2007331), will be consolidated through the CREACTIVE project. The PROSAFE network was created to export the experience gained with the Italian Margherita Project in establishing clinical audit to improve the quality of care in the ICU setting. In 2012, 242 ICUs, mainly from Italy, had joined PROSAFE, recruiting 85,965 patients in total13. Of these ICUs, 199 admitted at least one TBI patient, totaling 3,344 cases. On the basis of these statistics, the network expects to recruit about 7,000 moderate to severe TBI patients over a period of 4 years.

Two features of the PROSAFE project are particularly valuable for CREACTIVE from an epidemiological perspective.

First, all kinds of healthcare facilities will be involved, from secondary to tertiary, to quaternary care level centers. This is extremely important, considering that the representativeness of the sample matters even more than its size. At the present, a large fraction of moderate to severe TBI patients continue, perhaps inevitably, to be admitted to peripheral, secondary care centers, where it is often hard to decide whether to centralize a patient to a tertiary or even a quaternary care facility. On this premise, if InTBIR is actually to be able to improve outcome of TBI patients, it is mandatory to know what happens in secondary centers. Second, all admitted patients will be registered in the PROSAFE Case Report Form, while those with TBI will be registered in both the CREACTIVE and PROSAFE forms. This is of paramount importance for many reasons: it will provide a general picture of the case mix of the ICUs and their general performance, which can be taken into account in explaining variability in TBI patient management; it will be possible to monitor the participation of each ICU in the study; the software will alert the presence of eligible patients, thereby avoiding any selection bias; and, ultimately, this will foster familiarity with data collection and promote the overall quality of the information gathered.

Finally, from the patient perspective, given the importance of TBI-related disabilities, mortality cannot be considered the only outcome to assess the impact of the condition. Accordingly, a follow-up will be performed six months after the trauma event, and will be two-tiered. The first level will be administered over the phone and consist of the extended version of the Glasgow

Outcome Scale (GOSe) to assess disability and the QOLIBRIOS to evaluate the health-related quality of life. The second level will encompass a full patient examination. In the case of children, this will include a dedicated sleep disturbances study. The second level follow-up will be performed in a selected subgroup of ICUs only.

Bio-bank and bank of clinical imaging

The damage occurring after trauma is the consequence of two distinct, partially independent mechanisms, namely primary and secondary injury14. Whilst the first is directly caused by the impact, the second is governed by a complex set of cellular processes and biochemical cascades that occur in the minutes to days following the trauma. Through different pathways, the most critical results of secondary injury are the progression of the hemorrhagic lesion and/or the cytotoxic and vasogenic edema (swelling of the brain), which ultimately cause a rise in intracranial pressure.

Since this accounts for the greatest number of TBI deaths occurring in hospital14, the main aim of treatment in the acute stage of TBI is to control and lower intracranial hypertension15.

In this framework, it is crucial to better characterize the progression of hemorrhagic lesions and cerebral edema and to increase our knowledge on the factors that can influence them. The substantial variability of these two phenomena among subjects not fully accounted for by the initial lesion severity suggests that an individual genetic predisposition can play a role in their magnitude and, consequently, in the final patient outcome.

We will study the evolution of the focal lesion volume (hemorrhagic and/or perilesional edema) through the analysis of serial computed tomography (CT) images, circulating and cerebrospinal fluid (CSF) biomarkers, and possible underlying genetic predisposition. There is an increasing volume of evidence that highlights the association between outcome and CT imaging16, biomarkers17, and genetic polymorphisms18. But these three important aspects have always been analyzed independently from each other, and never been collected together in the same population.

We will implement centralized repositories of detailed clinical data, biological samples (Bio-bank), and repeated clinical imaging, on the same large sample of adult patients (up to 2,000).

This will provide a unique opportunity for the integrated analysis of secondary injury following TBI. Starting from the automated analysis of imaging data, we will evaluate the variability in the progression of both the hemorrhagic lesion and the perilesional edema, also assessing their association with the outcome. We will then concentrate the analysis on circulating and CSF biomarkers and genetic predisposition to the most promising mechanism: either trauma-induced coagulopathy underlying hemorrhagic progression, or regulation of both blood-brain barrier permeability behind vasogenic edema and ischemic events underlying cytotoxic edema19.

Given the complexity of the entire picture and the expected new knowledge that may be available when the samples are ready for analysis, an ad hoc, independent, scientific advisory board (SAB) will finalize the protocol of the various determinations.

Depending on the results of the imaging analysis and the new available evidence, the SAB will jointly identify which already recognized circulating and CSF biomarkers, and which other innovative ones will be tested, in addition to the most promising genetic analysis to be performed.

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Building a prognostic model

Of all the CREACTIVE project aims, the most important is definitely to build an accurate prognostic model for TBI patients. Indeed, the other aims can only be achieved if such model becomes available.

In the critical care medicine field, several â&#x20AC;&#x153;severity of illnessâ&#x20AC;? scoring systems have been proposed, but they have inevitably proved to lack generalizability. This is particularly true for TBI, where in 2006 prognostic models were still inadequate, as reported by a systematic review20, and a more recent model still proved to calibrate poorly when applied to an external cohort21. At present, a number of problems hamper the development of a reliable global prognostic model. First, a scoring system developed in a specific geographic, economic and social context, produces biased estimates when applied to other areas. This is because unmeasured context-specific variables influence the weight of the prognostic factors included in the model22. Second, the development of prognostic models is so complicated that once built, they are unlikely to be updated for many years. At present, severity scores constructed many years ago, such as SAPS II, APACHE II, PIM2 and PRISM2, to cite just the general ones, are still commonly used. This generates a temporal bias related to the improvement of health care quality and changes in case mix over time that the model cannot account for23. Finally, the internal validity of currently used severity scores has never been adequately tested in important subgroups and so miscalibration of the model cannot be ruled out23. Consequently, when severity scores are applied to populations from the developmental sample with different case mixes, their predictive power deteriorates.

The aim of the CREACTIVE consortium is to overcome these problems. In essence, a large number of ICUs will be collecting data on a regular basis, providing enough statistical power for prognostic modeling; a prognostic model will be developed every year to avoid the temporal bias; a second yearly model will take

into account the context-specific variables, together with the patientsâ&#x20AC;&#x2122; characteristics, to increase generalizability; the uniformity of fit of the models will be assured through the GiViTI Calibration Belt24, 25 in subsets identified by a high number of prognostic variables, to assure internal validity.

Comparative effectiveness of clinical interventions

The main goals in managing patients with moderate to severe TBI are (a) to maintain life in spite of the primary tissue injury, (b) to protect the brain from secondary neuronal injury, and (c) to prevent secondary injury in other organs resulting in multi-organ dysfunction syndrome1. Some of the pathophysiological mechanisms that affect the outcome of these patients include brain edema, increased intracranial pressure, hyper- and hypotension, hypoxia, brain ischemia, hypercapnia, temperature regulation, hyper and hypoglycemia (peripheral or regional), hyper- and hyponatremia, seizures, sepsis, etc. A number of interventions designed to manage these derangements have been a topic of controversy, mainly due to the lack of high quality randomized-controlled trials.

Firstly, ad hoc analyses (e.g., cluster analysis) will be performed to identify the most frequently used bundles of interventions (including individual treatments). For each bundle, a propensity score (i.e., the probability of bundle assignment according to observed baseline characteristics) will be developed through a logistic regression model. Comparative effectiveness analysis will be performed through both covariate adjustment and stratification, using the propensity score.

Identification of excellence in treating TBI patients

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Observed mortality

Observed mortality

In the literature on quality of care assessment, one of the most widely used indicators is the standardized mortality ratio (SMR), which is the ratio between observed and expected mortality in a subgroup, according to the benchmark26. When a prognostic model is used as benchmark figure 1 for the centers forming its de ICU A ICU B velopment sample, the SMRs Total patients = 210 Total patients = 1108 of the individual centers will Total expected deaths (E) = 65.4 Total expected deaths (E) = 210.7 Total observed deaths (O) = 82 Total observed deaths (O) = 209 be distributed around one.

Ratio O/E = 1.25 Ratio O/E = 0.99 However, some centers will Confidence interval O/E (95%) = (1.1,1.41) Confidence interval O/E (95%) = (0.9,1.09) exhibit a statistically signifiCalibration belt cant deviation from one. This Calibration belt means that their better- or Polynomial degree:1 1.0 1.0 Polynomial degree:1 GiViTI Cal. Test, p 0.003 worse-than-benchmark outGiViTI Cal. Test, p <0.001 come is not due to chance 0.8 0.8 variation but to potentially different performance. Moreover, SMRs that do not devi0.6 0.6 ate significantly from 1 may hide statistically significant 0.4 0.4 differences from benchmark in specific classes of risk (say, patients at low risk of death), 0.2 0.2 Confidence Over Under Confidence Over Under or in specific subgroups (say, Level the bisector the bisector Level the bisector the bisector 80% 0.00 - 0.56 Never patients with severe infec80% 0.40 - 1.00 0.00 - 0.16 95% 0.03 - 0.45 Never 0.0 95% 0.48 - 1.00 0.00 - 0.12 0.0 tion).

0.0 0.2 0.4 0.6 0.8 1.0 The GIVITI calibration 0.0 0.2 0.4 0.6 0.8 1.0 Expected mortality belt does instead provide this Expected mortality detailed information24, 25, 27.

In this example, the GiViTI Calibration Belt shows that unit A has major problems in less severe patients (those with expected mortality lower than 0.45), where the observed mortality is The use of such a tool will higher than expected (the belt is above the bisector). Conversely, ICU B has weaknesses in more severe patients (the belt is above the bisector) and strengths in less severe ones (where the observed mortality is lower than expected, and the belt is below the bisector). thus allow identification, on

the one hand, of centers with the highest performance in TBI treatment and, on the other, of those with poor results. In short, the GiViTI Calibration Belt is the confidence band that compares the observed with the expected probability of a dichotomous outcome (according to a given model). A statistically significant deviation from the null hypothesis of perfect calibration, i.e. when the model predicts what is actually observed, occurs when the 95% confidence boundary of the GiViTI Calibration Belt does not encompass the bisector (i.e. the ideal line of perfect calibration).

Once a model has been demonstrated to calibrate well in all subsets of patients defined by the covariates considered, any deviation from the bisector by the Calibration Belt of an individual ICU means that the outcome observed in that ICU is not in line with the average performance (see Figure 1).

This approach will furnish ICUs with appropriate tools to selfevaluate weaknesses and strengths in their care performance and to enable identification of ICUs of excellence, permitting good exchange of practices and ultimately quality improvement.

Discussion

The CREACTIVE project’s partners, fully embracing the InTBIR Initiative objectives, envisage the formation of an ever growing, open access, true international database that will include thousands of patients from the whole spectrum of Traumatic Brain Injury and hundreds of clinical, radiological, biochemical, hormonal, genetic, cognitive parameters/derived parameters, providing the research community with a valuable tool for TBI research.

Limitations of the project’s epidemiological approach would possibly include: a) failure to recruit a valid and representative number of patients with moderate to severe TBI from each country, thus limiting their interpretation, b) failure to achieve high-level of compliance in follow up studies, rendering research based on outcome indices and construction of a reliable predictive model, difficult to pursue. Regarding collection of clinical, physiological, biological and radiological data, this attempt constitutes a serious world-leading step towards the establishment of a BIG DATA facility, dedicated to Traumatic Brain Injury. Entering the daunting era of BIG data, offers unique opportunities but also creates an unprecedented bulk of null hypotheses! Running diverse experiments on this huge testing bed and checking for pathophysiological interrelations, many research lines in basic, translational as well as industrial research shall be abandoned and new will emerge.

InTBIR will soon face the ultimate challenge to deploy the most appropriate IT infrastructure and service architecture(s) required to link, share or combine disparate datasets, as well as the correct data structure(s) to enable natural language processing, trend analysis and outcome prediction. It will also be called to face the diverse ethical andlegal frameworks for the international/transatlantic transfer of medical-clinical data. At the same time, the research community across the scientific disciplines dealing with Traumatic Brain Injury, should identify areas of greatest need that would benefit most from or are most amenable to big data cognitive analytical approaches and specific projects should be designed.

References

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About the Authors

Guido Bertolini, Giulia Paci, Joanne Fleming - GiViTI Coordinating Center, IRCCS-Istituto di Ricerche Farmacologiche “Mario Negri”: Centro di Ricerche Cliniche per le Malattie Rare Aldo e Cele Daccò, Ranica, Bergamo – Italy; Luca Antiga - Orobix, Bergamo – Italy; Akos Csomos - Semmelweis University, Budapest – Hungary; Rafael Kaps - General Hospital Novo Mesto – Slovenia; Isaac Lazar - Soroka University Medical Center and the Faculty of Health Sciences, Ben Gurion University – Israel; Malgorzata Mikaszewska - Medical University of Warsaw – Poland; Matteo Mondini1, Nektaria Xirouchaki - University of Crete Medical School, University Hospital of Heraklion – Greece; Roberto Latini - IRCCS – Istituto di Ricerche Farmacologiche “Mario Negri”: Dept of Cardiovascular Diseases, Milano – Italy; Primoz Gradisek - University Medical Center Ljubljana, Ljubljana - Slovenia; Theodoros Kyprianou - Medical School, University of Nicosia & Nicosia General Hospital – Cyprus The study was funded by the European Commission in the context of the 7° Framework Program (contract n. 602714) To contact the corresponding author: Guido Bertolini, GiViTI Coordinating Center, Istituto di Ricerche Farmacologiche Mario Negri, Centro di Ricerche Cliniche per le Malattie Rare Aldo, e Cele Daccò, 24020 Ranica (Bergamo), Italy. E-mail: guido.bertolini@marionegri.it.

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Model of care for patients with ABI in Teleton Mexico

Dr. Arturo E. Pichardo Egea and Dra. Erika Enriquez Elizalde

our work has focused on our patient’s goals, not only medical Our center was established in 1999 with the following mission: Recognizing and preserving their human dignity, we help children outcomes, because we know that what happens to one person with neuromusculoeskeletal disorders trough a holistic and com- affects his entire environment and therefore his family and prehensive rehabilitation model that promotes their full develop- loved ones as well.

Our admission criteria to the program are children 0 to 18 ment and involvement in society.

Thus was born the first center in figure 1 our network of non-profit rehabilitation centers in Mexico. Today, we VOLUNTEER WORK PUBLIC INQUIRY SERVICE have 21 centers around the country SCRIPT operating as part of the “Sistema de INITIAL ASSESMENT Centros de Rehabilitación Infantil Clinic accompanying Preassessment Reference / Orientation INTEGRAL CLINIC Teleton” or “CRIT System”. Our physician: Diagnosis by CIE10 main source of income is an annual Gross Motor television program called “Teleton” REFERENCES Weefim ACCEPTANCE Services that raises funds in on the national provided by Partner Hospital broadcast networks and which, partner Hospital: Community Sociodemopgraphic study Consultant physicians x over time, has become an emblemProtocol Psycological assessment (self referrals) 1 Supplementary Diagnostic Family functioning atic event of national unity.

Tests Surgery From these formative years in Orthosis & Prosthesis Mexico we developed our next viCLINIC Interdiscp. / Coord.

TREATMENT sion: Teleton aims to be the best Outlining of Physical Therapy RPSE Treatment Occupanctioncal Therapy network of children’s rehabilitaObjectives, Language Therapy Revision of Goals Discharge tion centers worldwide, promotDischarge Time Psychological & Integration Family Care ing human values and culture that Social Integration Expectation enhances social involvement of all 1 Thanatology Special Projects 1 disabled individuals.

Our quality philosophy is HUMAN MATERIAL SYSTEMS MANAGEMENT “Love and science for life” and this DEVELOPMENT RESOURCES statement reflects our treatment Editors Note: Thanatology is the accompanying and spiritual support of the terminal stages of some degenerative conditions like approach to our families and pa- muscular dystrophy. Special projects involve helping skills and competences in children to achieve their social inclusion, outdoor tient’s. In fact, since the beginning, activities with some Teleton friend’s (young volunteers under 20) and the support of medical staff.

28 BRAIN INJURY PROFESSIONAL

years old, with neuromuscular and skeletal disabilities or with multiple disabilities, including sensorial or intellectual ones, accompanying the motor disorders. Our care model is an outpatient program.

We have treated nearly 100,000 patients historically, of which about 30,000 are already active or into the program. We have provided more than 15 million services since our opening, and we are active in 20 different states of Mexico. Our model is comprehensive because we are focused on the biological, social, psychological and spiritual aspects of patient and family. Our model of care is based on clinical organization, management trough clinical operating guidelines, is multi and interdisciplinary, patient focused, based on universal ethical principles and ruled in accordance with quality standards, norms and regulations in force.

Our focus is on three main impairment groups: 1. Group A: Brain injury and cerebral palsy.

2. Group B: Neuromuscular disorders, amputees, ostheoarticular diseases, spinal cord injury and spina bifida, and all genetical and congenital conditions associated with motor and multiple disabilities.

3. Group C: For the little ones with a diagnostic of Risk factors at birth, in an Early Stimulation Program.

These groups are called “Clinics” and are led by a Physical Medicine and Rehabilitation doctor, (the accompanying doctor) who oversees the clinical team and the goal treatment directions. An integrated team of PT’s, OT’s, speech therapists, familiar psychologists, social workers, and orthotics and prosthetics specialists work together and participate in clinical meetings and the critical processes of our medical and care model (Figure 1).

As noted in Figure 2, upwards of 60% of our capacity is dedicated to Brain Injury in different levels of motor compromise according to GMFS. In each case, our teamwork in accordance with patient and family traces the treatment goals and in the timeline of them, the accompanying doctor gives the follow up and update of that goals.

All team members work toward a common goal: the social inclusion of the patient. It is very important to have a periodic functional independence measure through the WeeFIM scale in order to achieve this. If the level of disability is mild to moderate (GMFS I-III), the goals are based on the patient necessities through all the available technics of treatment in a facility based outpatient program. If the motor and intellectual compromise is severe (GMFS IV-V), the treatment goals are centered in their family or the primary caregiver through interdisciplinary teaching programs, home and community based programs, therapies and services in our facility. Our clinical guidelines were developed through the experience of our professionals and an evidence based medicine bibliography review (Figure 3).

Part of our care model is based in traditional physical modalities of treatment, such as hydrotherapy, electrotherapy and emerging technologies applied to rehabilitation such as robotic gait training, robotic mobilization of the upper limbs, immersive virtual reality, and pharyngeal electro stimulation.

Our therapists have various certifications in different neuro-

Patients treated at TELETON

figure 2 CRIT

GMFCS I, II, III

GMFCS IV, V

TOTAL

Edo. Mex

3224

3894

7118

Occ.

2259

2136

4395

Oax.

833

705

1538

Ags.

953

893

1846

Coa.

519

565

1084

Gto.

622

657

1279

Hgo.

402

419

821

Chh.

411

432

843

Chp.

747

885

1632

Qroo

342

372

714

Neza

593

760

1353

Yuc.

362

357

719

Tam.

297

324

621

Dgo.

276

298

574

Ver.

304

313

617

Son.

219

296

515

Bcs.

246

233

479

Pue

224

248

472

Cd. Mex

178

239

417

Gro.

178

204

382

Mich.

152

157

309

3341

14387

27728

The Gross Motor Function Classification System (GMFCS) is a 5 level clinical classification system that describes the gross motor function of people with disabilities on the basis of self-initiated movement abilities. Particular emphasis in creating and maintaining the GMFCS scale rests on evaluating sitting, walking, and wheeled mobility.

developmental techniques and the management of spasticity.

In our program, we also have clinicians participating in a range of specialties including orthopedic surgery, pediatrics, audiology, ophthalmology, genetics, urology, nutrition, dentistry, anesthesiology, and pulmonary rehabilitation, which are all integrated into the team and participating in a comprehensive assessment together with the accompanying doctor. If the patient needs surgery, this is done at an outside hospital (with the participation of our orthopedic surgeon).

We use complementary diagnostic studies including x-rays, CAT scans, EMG, EEG, audiology scans, and Gait and Motion Analysis.

In case of orthotic or assistive technology needs, the team decides and prescribes the appropriate adaptation and an external provider, together with the OT, PT, speech and language therapist and accompanying doctor, verifies the usefulness of the device for the patient.

At the end of the rehabilitation process, the final discharge of the program may be in any of these categories: • Integrated to regular school (fortunately, over 60% of our patients achieve this kind of result), • Integrated to special school (in Mexico we still have this educative model, 4% of the cases), • Achieve normal motor development (most of the patients in group C, 8% of the cases), and • By the strengthening of their family ties for severe cases (28% of the cases).

BRAIN INJURY PROFESSIONAL

29

Clinical operative guideline for Group A. ABI GMFS I-V

figure 3

Withdrawal Referred

Pre-evaluation

Accepted

Schedule • Initial Clinical Evalu- • Initial Family Interview ation and WeeFIM • Customer Service • Integral Clinic • Volunteering Talk • Initial Evaluation

Referral to another Institution Expulsion Death

Referred

Telephone call for enrollment

Assignment of record number and clinic number.

Waiting list

Transfer to another CRIT

Referral to another Institution

Exit

Accompanying Doctor New Clinic

Continue

Change in Clinic

Cover sheet, clinical history, etiologic and oncologic diagnosis, WeeFIM, disability profile, integral diagnosis, rehabilitation plan, rehabilitation prognosis, delivery of work notebook for families

Integral Clinic • Pediatric Rehabilitation • Pediatrics • Pediatric Neurology • Human Communication • Pediatric Orthopedics • Nutrition

Physical Therapy • Mechanotherapy • Electrotherapy • Water therapy • Pre-prosthetic / Prosthetic

Social Integration • Social Evaluation • Social Visit: home and school • School Inclusion • Informative Talks • Social Orientation • Social Analysis • Pediatric Support for Educational Inclusion

Occupational Therapy Language Therapy

Committees • Surgery • Thanatology

Lung Therapy Special Projects Club Amigos Teletón, Teletón Summer, and Workshops

Family Psychology • Treatment Plan • Psychological Evaluation • Family Psychology • Family Group Psychology • Family Orientation • Family Psycho-Analysis

Orthoses, prosthesis, and functional aids Functional Surgery

• Non-fulfillment of the rules • Non-fulfillment of medical instructions • Thanatological Support

Release with WeeFIM • Family Connection • Psychomotor development average reached • Regular school integration • Special education integration • Integration to a CENDI child development center • USAER school integration • Work Integration

Customer Service • Orientation Talk • Schedule

• Change in address • Inconformity with the treatment • Prefers another center or school • Loss of Contact

Definitive

Interconsultants • Pediatrics, Pediatric Neurology, Human Communication, Pediatric Orthopedics, Nutrition, Pediatric Urology, Genetics, Lung Rehabilitation, Anesthesia, Pediatric Dentistry, Paidopsychiatry, Eye Medicine • External Interconsultants Diagnostic Auxiliaries • Radiology and Imaging • Movement Laboratory • Electroneurodiagnostics • External Lab

Nursing and Ambulance

Technological Assistance Volunteering Values, spiritual, support programs

Interdisciplinary, inclusion, and coordination and follow-up clinics

Is important to mention that this is a long term program, as are all of our rehabilitation programs. The average length of stay is 33 months and the average number of services provided during that time is 275 per family and patient. For those with a mild and moderate prognosis, the average points of WeeFIM improvement are 22, regardless the area of achievement.

In the case of severe prognosis, the average of stay is 31 months, with an average of 244 services provided per family and patient. The average points of WeeFIM improvement are 9, regardless the area of achievement.

The average age group is 5 to 8 years old, and the distribution by gender 52% males, 48% females.

Major diagnoses founded in the population are according to the ICD 10 as chart number 4 shows.

We have a program of ongoing quality and continuous Improvement for the follow up of the outcomes of the program, the guidelines of the quality standards, the quality accreditation program both nationally (Health Minister) and internationally (CARF). Other accreditations obtained are Great Place to Work (ranking 27 in Mexico) and ICI (Institution committed with nondiscrimination) for the National Commission Against Discrimination in Mexco (CONAPRED).

30 BRAIN INJURY PROFESSIONAL

All of the collaborators in our rehabilitation centers are proud to serve persons with disabilities and to participate of the Teleton Mission. We are committed to improving the quality of life of our patients and families and our promise of quality of care and with be always better giving love, being compassionate and passionate to work in order to get our vision someday.

References

Coutiño B, et al. Daño neurológico encefálico por encefalopatía no progresiva. Única edición.

Aguascalientes México: 2002 www.global-help.org. Febrero 2006 Stokes M. Rehabilitación neurológica. Harcout, colección de fisioterapia II. 1ª. ed. Madrid: 2001 Macías L., Fisioterapia en pediatría. McGraw Hill-Interamericana. 1a.ed. España: 2002 Howard I, Hurting, et al. Clínicas Neurológicas de Norteamérica volumen 3. Macgraw Hill- Interamericana; 2001 Métayer M. Reeducación cerebromotriz del niño pequeño. 2ª. Reimpresión. Barcelona: Masson; 2001

About the Authors

Dr. Arturo E. Pichardo Egea is a medical specialist in the Laboratorio de Movimiento CRIT Estado de México. He is also the medical director of the Sistema de Centros de Rehabilitación Infantil Teletón, México.

Dra. Erika Enriquez Elizalde is a specialist in medical rehabilitation with a subspeciality in pediatric rehabilitation at the Sistema de Centros de Rehabilitación Infantil Teletón, México.

legal spotlight Confronting Jury Biases in the Civil Justice System Co-written by Yeemee Chan, JD and Frank Toral, JD. Biases are prevalent everywhere, and the civil justice system is no exception, especially when it comes to traumatic brain injury (“TBI”). The average juror has a difficult time awarding damages for pain and suffering and future medical care in brain injury cases because most TBI survivors make good physical recoveries and do not exhibit obvious signs of disability. It is only until you interact with the person that you realize the deficits lay beneath the surface. Nevertheless, due to the inherent biases of our society, common deficits experienced by TBI survivors, such as problems with memory, attention, processing information, lack of motivation, and aggressive behavior, are often misinterpreted as character flaws rather than injury-related behaviors. Furthermore, the typical defense of a brain injury case focuses on the plaintiff’s pre-existing health problems such as attention deficit disorder, alcohol/drug use, depression, and anxiety. These defense tactics confirm inherent jury biases and present difficult challenges for the plaintiff’s attorney to overcome. There are specific ways to handle jury bias in TBI cases, thus, it is vital for plaintiffs to retain counsel with the requisite knowledge, skill, and experience in TBI litigation in order to obtain just compensation for their injuries.

Being a juror is daunting for most people because you are charged with the difficult and uncomfortable task of deciding the outcome of a lawsuit. Many jurors have anxiety when they enter the courtroom because it is a formal, unfamiliar venue.

For the most part, jurors are eager to learn new information and want to render a fair decision. Unfortunately, however, jurors’ minds are not empty canvases. Rather, they are made up of preconceived beliefs, biases and stereotypes. Everything that transpires in the courtroom, from the way lawyers interact with each other, their client, and the judge, to the presentation of witnesses, passes through the filter of the juror’s preconceptions. As such, it is crucial to have a persuasive theme and to tell a compelling story throughout the trial. However, having a solid theme and telling a good story will not end jury biases. To be sure, any unanswered questions or gaps in information will undoubtedly be replaced with juror bias.

TBI plaintiffs are often walking and talking by the time trial takes place. Therefore, from the moment jurors hear that the case involves a TBI and they look over at the plaintiff who appears seemingly normal, they will immediately draw conclusions about the plaintiff based upon their biases. Thus, the TBI plaintiff is challenged with overcoming a huge hurdle even before the first witness testifies. The presentation of trustworthy and believable witnesses that will carry out the plaintiff’s theme will help to disintegrate the inherent biases that exist. One of the most important witnesses in a TBI case is the “before and after” witness. “Before and after” witnesses are persons who can testify about what the plaintiff was like before and after the injury, such as the plaintiff’s pastor, employer, family, and friends. These wit-

nesses play a large role in shaping the credibility of the plaintiff and his or her case, allowing the jury to relate to the plaintiff, and having the plaintiff’s injuries come to life. Testimony from “before and after” should transform the jurors’ perceived reality into the plaintiff’s reality.

Another way to control juror bias is through the use of objective data. Jurors rely on hard data, or the lack thereof, to support their position on the merits of the plaintiff’s case. Presenting objective data for cases involving broken bones and burns is simple because the injury is visible or objectively verifiable through xrays and other diagnostic tests. While many brain injuries are visible on MRI’s or CT scans, which are accepted by courts as scientific evidence of injury, some brain injuries are only visible on newer diagnostic testing such as SPECT and PET scans.

These newer tests are not yet accepted by all courts; therefore, the plaintiff faces another challenge to get these tests admissible in court. Without objective findings of TBI, it will be extremely difficult to overcome juror bias.

Every litigant faces biases in the civil justice system, but, in TBI cases, jurors’ minds are often made up when they hear the words, “traumatic brain injury” and they see the plaintiff. Although there are unique tools and techniques that can be used to defeat jury bias in a TBI lawsuit, only a legal team experienced in TBI is equipped to leverage them and maximize the recovery for the plaintiff.

About the Author

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

BRAIN INJURY PROFESSIONAL

31

literature review Traumatic Brain Injury: Rehabiltaiton for Everyday Adaptive Living (2nd Edition)

By Jennie Ponsford, Sue Sloan, and Pamela Snow Hove and New York: Psychology Press, 2013.

There are three things that come ringing through as you read the 2nd edition of Traumatic Brain Injury by Ponsford, Sloan and Snow: (1) the authors have deep and extensive experience in the rehabilitation of individuals with brain injury and their families. (In fact, the lead author, Jennie Ponsford, has been working in this field since rehabilitation of individuals with brain injury began in earnest in the late 1970s.) (2) They are very knowledgeable in the clinical research literature in brain injury.

(In fact, a substantial portion of this literature has been generated by their group in Melbourne.) (3) And perhaps most importantly, they are able to integrate their knowledge of the literature with their clinical experience to provide readers with practical, effective practice recommendations that are both goal-oriented and sensitive to the emotional and experiential needs of individuals with brain injuries and their close others.

Contained in the subtitle of the book, “Rehabilitation for Everyday Adaptive Living”, the REAL approach to brain injury rehabilitation advocated throughout the book illustrates this latter point. REAL stands for: Rehabilitation oriented to improve Everyday community functioning and integration through Adaptive learning and adjustment to develop high quality Living in the long term.

Overall the book guides the reader through care of the patient with brain injury from early mechanisms of recovery through managing impairment of consciousness; planning for community re-entry; assessing and managing cognitive, communication, adjustment, relationship, and behavior problems; and making the final steps toward community reintegration including return to work or school, driving, and social and leisure activities. Separate chapters discuss how to work with families and the special considerations in working with children with in brain injury. Sections in each chapter follow a similar pattern in addressing this range of clinical issues. First, the relevant literature is critically reviewed. Then, the major lessons from the literature are integrated with the authors’ clinical experience to offer clear guidelines and recommendations to providers for addressing the identified issue. Finally, one or more case studies are provided to illustrate the implementation of recommended techniques and practices.

Early on in the book, the authors emphasize that the importance of providers keeping their focus on the long term goals of the individual recovering from brain injury. They echo Covey’s admonition to “begin with the end in mind”: “In order to ensure a focus on meaningful outcomes, rehabilitation needs to begin with a vision of the end in mind. That is, an understanding of the individual’s previous or desired life roles within the context of their social and community environment is the key to devising cognitive rehabilitation programmes that result in meaningful outcomes.” (p. 67) 32 BRAIN INJURY PROFESSIONAL

They caution against rehabilitation that focuses entirely on the remediation of impairment without consideration of the long term goals of the individual with brain injury: “As a consequence of failure to consider Participation Restriction, many rehabilitation professionals do not fully understand how individuals with TBI are actually disadvantaged in their social and community context. This results in many well-intentioned rehabilitation efforts having a minimal long-term impact.” (p. 68) Also commendable is the authors’ appreciation that individuals with residual disabilities after brain injury, like individuals with other chronic medical conditions, will likely need care throughout their lives.

Ongoing care may involve rehabilitation refreshers, interventions to address social or work/school problems as they arise, or ongoing medical care.

While the authors clearly have the “big picture” on brain injury, the bulk of this text details what to do and how to do it to address the array of challenges to fully re-entering community life for individuals with brain injury and their close others. In this regard, the book will be of high value to those entering the field to provide an overview as well as specific recommendations to enhance practice. Although I’ve been in this field awhile, I also found great value in this book. It highlighted and reinforced the lessons we have learned in the last 30 years and filled in the gaps in my knowledge in areas on the periphery of my practice. The authors have packed a wealth of information into a relatively small space (a little over 300 pages of information and another 45 of references).

There’s very little not to like about the book. If I were pressed to identify a few weaknesses, I might note that the concept of “person first language” does not appear to have migrated to the Land Down Under.

The chapter on children provides an excellent overview and, like the other chapters, many helpful hints. However, those whose practices are devoted to pediatric brain injury rehabilitation will also want to peruse primary sources. And although there is a very nice color reproduction of a DTI scan, the publishers failed to reproduce the CT scans in the early part of the book very clearly. Apparently Psychology Press did not realize what a gem they have here.

About the reviewer

James F. Malec, PhD is Professor and Research Director in PM&R IUSM and RHI, Professor Emeritus of Psychology at the Mayo Clinic, and Board Certified in Clinical Neuropsychology and in Rehabilitation Psychology. Dr. Malec is currently Co-Director of the IUSM/ RHI TBI Model System and directed the Mayo TBI Model System from 1999 through 2007. For the past 30 years, he has worked as a clinician and researcher in neuropsychology and brain injury rehabilitation with a particular interest in postacute rehabilitation and outcome measurement. He has over 130 peer-reviewed publications, and has received a number of professional recognitions including: the North American Brain Injury Society Research Award, and the Moody Prize for Distinguished Initiatives in Brain Injury Research and Rehabilitation.

non-profit news NORTH AMERICAN BRAIN INJURY SOCIETY

Mark your calendars for the next NABIS meeting which will be held April 30-May 2, 2015, at the Westin Riverwalk Hotel in San Antonio, Texas!

The 2015 program will be chaired by Jonathan Silver, MD, of the New York University School of Medicine. Dr. Silver will be supported by an outstanding scientific committee of multidisciplinary brain injury professionals from across North America. As in previous NABIS meetings, the organizers welcome the submission original brain injury research for consideration for possible presentation at the conference. Abstracts are now being accepted via the NABIS on-line submission site. For details, or to submit your research, visit: www.nabis.org.

Brain Injury association of america

The Brain Injury Association of America (BIAA) was an invited participant at the White House Healthy Kids and Safe Sports Concussion Summit on May 29, 2014. Greg O’Shanick, M.D., BIAA’s medical director emeritus, represented the organization and discussed BIAA’s efforts surrounding youth concussion interventions. With a generous grant from SAP, BIAA is developing an app that will give parents, teachers, coaches, and allied health professionals a platform to communicate with one another. It will also provide tools to help students return safely to school after concussion. BIAA endorsed the Jacob Sexton Military Suicide Prevention Act of 2014, which passed through the Senate Armed Services Committee and will be taken up by the Senate as part of the National Defense Authorization Act (NDAA) for FY2015. BIAA has a number of webinars scheduled for people with brain injuries, caregivers, and professionals working in the field of brain injury. Visit www.biausa.org/webinars.

DEFENSE CENTERS OF EXCELLENCE FOR PSYCHOLOGICAL HEALTH AND TRAUMATIC BRAIN INJURY With the steadfast mission to advance psychological health and traumatic brain injury (TBI) care of the nation’s service members, veterans and their families, DCoE continues to cultivate an awareness of and influence policy pertaining to TBI care. The Defense and Veterans Brain

Injury Center (DVBIC) – The TBI operational center for DCoE – collaborates with the armed services to excel TBI prevention and care for service members stationed worldwide, and develops tools to enable health care providers to quickly assess and treat concussions sustained in the deployed and non-deployed settings.

The Concussion Management Algorithm

(CMA) and Military Acute Concussion Evaluation (MACE) tools are resources that reflect

the latest scientific research in acute mild TBI (concussion) care. The CMA offers standards and processes to evaluate and manage concussions in the deployed setting. Evaluation can be further enhanced by using the MACE that contains brief cognitive and neurological exams as well as symptom results to help first responders precisely screen service members who may have sustained a concussion. Together, these resources enable first responders and health care providers to rapidly evaluate service members who sustain a concussion and provide them with the initial care they need anywhere, anytime. To download or order these and other TBI related resources, visit www.dvbic.dcoe.mil.

In addition to the CMA and MACE tools, DCoE also offers around-the-clock resources for individuals seeking TBI support. As TBI continues to be a pressing health concern around the globe, the DCoE Outreach Center is positioned to provide information to address psychological health and TBI questions and/or needs. Visit www.dcoe.mil/families.help.aspx to learn more or speak with a trained health resource consultant who specializes in psychological health and TBI support.

INTERNATIONAL BRAIN INJURY ASSOCIATION

The International Brain Injury Association’s Tenth World Congress on Brain Injury was held March 19-22, in San Francisco. IBIA enjoyed record attendance with over 1,400 delegates present at the meeting. There was an excellent variety of topics, various learning formats and attendees and speakers from well over 40 countries. A complete recap of the Congress, as well as information on IBIA’s 2014 award winners, has been posted on the IBIA website.

Members of NABIS are encouraged to mark their calendars for the next World Congress scheduled to take place March 2-5, 2016, at

the Hague World Forum in the Netherlands.

For details, visit: www.internationalbrain.org.

NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS

Join the National Association of State Head Injury Administrators (NASHIA) in celebrating 25 years of the annual State of the States in Head Injury Meeting, first held in 1990. This conference will be held in Philadelphia, Pennsylvania, October 27-30, 2014 at the Downtown Marriott Courtyard. The theme of this year’s conference is “Invention, Innovation, and Interventions in Brain Injury”.

A Pre-conference session, Watching Their Steps: Children & Older Adults and Falls, will be held on Monday, October 27, 2014. Register for the pre-conference to learn about how to address fall-related injuries among these ages.

Visit our website to access the information on our recently held three part webinar series on Public Funding. Also available: “Special

Education Definition: An extensive summary of state definitions and guidance for educating Students with TBI-related disabilities”. Author:

Susan Vaughn, Public Policy Director. Visit: www.nashia.org

UNITED STATES BRAIN INJURY ALLIANCE

Barbara Geiger-Parker, Chair of the United States Brain Injury Alliance (USBIA) Board of Directors, was invited and participated in the White House’s Healthy Kids & Safe Sports Concussion Summit held on May 29. The summit brought together researchers, parents, coaches, professional athletes and sportscasters to help shine a brighter light on the issue. USBIA is also launching a new online learning community for brain injury resource facilitation. For more information, please visit www.usiba.org.

In addition, USBIA is pleased to welcome Marilyn Price Spivack to its Board of Trustees.

Marilyn is Founder/Past President of the Brain Injury Association of America (BIAA), formerly the National Head Injury Foundation (NHIF).

Her combined wealth of knowledge and experience will strengthen USBIA’s commitment to improving lives of children and adults by preventing brain injuries, increasing awareness, promoting understanding, and building support.

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33

legislative roundup All great achievements require time.

— Maya Angelou In late May, President Barack Obama hosted a White House Summit on Healthy Kids & Safe Sports to raise awareness among young athletes, parents, school administrators, clinicians, coaches and youth sports programs about identifying, treating and preventing concussions among students. During the Summit, the President announced financial support from the National Football League, National Institutes of Health (NIH) and others which are addressing research to improve safety initiatives.

Since the release of the report last fall by the Institute of Medicaid (IOM) and the National Research Council, much attention has been focused on the need for prevention, diagnosis, treatment and management of sports-related concussions. In April, the U.S. Senate Committee on Commerce, Science, and Transportation passed S. 1014, the Youth Sports Concussions Act, sponsored by Senator Tom Udall (D-NM) and Chairman John D. (Jay) Rockefeller (DWV), to protect youth athletes by curbing false advertising claims that sports equipment manufacturers make in order to sell protective sports gear. The Rockefeller-Udall bill now awaits action by the full Senate.

Last fall, Congressman Bill Pascrell, Jr. (D-NJ) introduced the Concussion Treatment and Care Tools Act of 2013 or ConTACT Act of 2013, (H.R. 3113) and Senator Robert Menendez (D-NJ) introduced the companion legislation, S. 1516, which directs the Department of Health and Human Services to establish guidelines for states on the implementation of best practices for diagnosis, treatment, and management of mild traumatic brain injuries (MTBIs) in school-aged children, including best practices relating to student athletes returning to play after an MTBI. The bill requires the Pediatric MTBI Guideline Expert Panel of the Centers for Disease Control and Prevention (CDC) to issue a final report on such best practices by March 15, 2015. As reported previously in the Legislative Roundup, Congresswoman Joyce Beatty (D-OH) introduced the Concussion Awareness and Education Act of 2014 (H.R. 3954), which contains the recommendations of the IOM report.

During March Brain Injury Awareness Day, Congressional Brain Injury Task Force Co-chairs, Pascrell and Tom Rooney (RFL) announced the introduction of H.R.4251, the National Traumatic Brain Injury Research and Treatment Improvement Act of 2014, directing the Centers for Disease Control and Prevention (CDC) to evaluate existing TBI surveillance and data collections, including concussion data, to further research on brain injury.

As of January 30th, all states have enacted legislation regarding “return to play” guidelines, education and training to minimize the effects of sports-related concussions. At least three states have addressed “return to learn” guidelines to help identify and address potential problems affecting academic performance after a sportsrelated concussion.

In April, Barbara A. Mikulski (D-MD), Chairwoman of the Senate Appropriations Committee, convened the Committee’s first-ever crosscutting look at innovation and the federal investment in research. More than 100 organizations submitted written 34 BRAIN INJURY PROFESSIONAL

statements ahead of the Committee’s hearing on “Driving Innovation through Federal Investments”, including organizations and coalitions interested in disability, rehabilitation and brain injury research.

A month later, the Presidential Commission for the Study of Bioethical Issues released volume one of its two-part response to President Obama’s request related to the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative. Released in May the report, Gray Matters: Integrated Approaches for Neuroscience, Ethics, and Society, includes four recommendations for institutions and individuals engaged in neuroscience research.

The President’s budget proposal doubles the federal investment in the BRAIN Initiative from about $100 million in fiscal year (FY) 2014 to approximately $200 million in FY 2015.

After months of negotiations, House and Senate leaders announced a bipartisan, bicameral bill to address employment and job training, including supports and services for youth with disabilities transitioning from school to work or postsecondary education. The Workforce Innovation and Opportunity Act, H.R. 803, reauthorizes the Workforce Investment Act of 1998 and reauthorizes certain provisions of the Rehabilitation Act of 1973.

The legislation moves the Independent Living program and the National Institute on Disability and Rehabilitation Research (NIDRR) from the Department of Education to the Administration for Community Living (ACL) within the Department of Health and Human Services. The legislation also incorporates “independent living” in the name and mission of NIDRR. Among other provisions, the bill requires states to produce one strategic plan as to how they will provide training, employment services, adult education and vocational rehabilitation through a coordinated, comprehensive system.

At the time of this article, both the House and Senate appropriators were working on funding for federal agencies and programs for FY 2015, which starts October 1st. Aside from appropriations, there are many issues still needing to be resolved by this Congress.

This includes the reauthorization of the TBI Act, which has cleared the House Committee on Energy and Commerce and is waiting for full House deliberations. Hopefully, brain injury issues, including research and prevention, will continue to be addressed as Members approach August recess and fall elections.

About the Editor

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

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

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