moving ahead: a new centre of research excellence in brain ... · keywords: traumatic brain injury,...

CLINICAL PRACTICE: CURRENT OPINION

Moving Ahead: A New Centre ofResearch Excellence in BrainRecovery, Focusing on PsychosocialReintegration Following TraumaticBrain Injury

Skye McDonald,1 Vicki Anderson,2 Jennie Ponsford,3 Robyn Tate,4 Leanne Togher,4

Angela Morgan,2 Jennifer Fleming,5 Tamara Ownsworth,6 Jacinta Douglas,7 andBruce Murdoch5

1 University of New South Wales, Sydney, Australia2 Murdoch Childrens Research Institute, Melbourne, Australia3 Monash University, Melbourne, Australia4 University of Sydney, Sydney, Australia5 University of Queensland, Brisbane, Australia6 Griffith University, Brisbane, Australia7 La Trobe University, Melbourne, Australia

Severe traumatic brain injury (TBI) is the most common cause of brain injury in theWestern world and leads to physical, cognitive and emotional deficits that reduceindependence. Changes to psychosocial function are the most disruptive, resultingin vocational difficulties, family stress and deteriorating relationships, and are amajor target for remediation. But rehabilitation is expensive and its evidence baseis limited. Thus, new collaborative initiatives are needed. This article details thedevelopment of ‘Moving Ahead’, a model for a Centre of Research Excellence (CRE)for Traumatic Brain Injury Rehabilitation. This CRE offers several major innovations.First, it provides an integrated, multi-faceted approach to addressing psychosocialdifficulties embracing different clinical standpoints (e.g., psychological, speechpathology, occupational therapy) and levels of investigation (e.g., basic science tocommunity function) across the lifespan. It is based upon a close relationship withclinicians to ensure transfer of research to practice and, conversely, to ensure thatresearch is clinically meaningful. It provides an integrated platform with whichto support and train new researchers in the field via scholarships, postdoctoralfellowships, websites, meetings, mentoring and across-site training, and thus buildworkforce capacity for individuals with TBI and their families. It has input fromthe international community to contextualise research more broadly and ensurescientific rigour. Finally, it provides collaboration across sites to facilitate researchand data collection.

Keywords: traumatic brain injury, rehabilitation, psychosocial function

Severe traumatic brain injury (TBI) from motor ve-hicle crashes, assaults and falls, is the most com-mon cause of brain injury in the Western world

Address for correspondence: Professor Skye McDonald, School of Psychology, University of NSW, Sydney, 2052,NSW, Australia. E-mail: [email protected]

and will surpass many diseases as the major causeof death and disability by the year 2020 (Hyder,2007). Ten million people are affected worldwide

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MOVING AHEAD: CENTRE OF RESEARCH EXCELLENCE IN BRAIN RECOVERY

annually. In the USA, 5.3 million people live withdisability from TBI, with 230,000 new cases perannum and up to 90,000 surviving with severe dis-abilities (Thurman, 1999). In Australia, there werean estimated 1493 new cases of moderate TBI and1000 new cases of severe TBI in 2008 (AccessEconomics, 2009).

Severe TBI leads to physical, cognitive andemotional deficits that reduce independence.Changes to psychosocial function are the most dis-ruptive, resulting in vocational difficulties, fam-ily stress and deteriorating relationships (Tate,Broe, Cameron, Hodgkinson, & Soo, 2005). Thecost of poor social behaviour is profound. Peoplewith TBI have fewer employment opportunities(Doctor et al., 2005; Ponsford, Olver, Curran, &Ng, 1995), poorer quality of life (Dahlberg et al.,2006) and experience social isolation (Demakiset al., 2007). They are also at high risk of de-pression, which further impacts on their abilityto integrate back into the community (Gomez-Hernandez, Max, Kosier, Paradiso, & Robinson,1997). Deterioration in function and social isola-tion results in dependence on recurrent governmenthealth funding, e.g., the lifetime costs of brain in-juries in Australia, in 2008 alone, were $A8.6 bil-lion (Access Economics, 2009). With normal lifeexpectancies and more casualties each year, thesocial burden is cumulative and climbing rapidly.Children with such injuries are doubly disadvan-taged as they are ill-equipped to learn normal skillsin the process of becoming mature, socially com-petent adults.

Clearly, psychosocial difficulties are a majortarget for remediation. But rehabilitation is aston-ishingly expensive and the evidence base for ex-isting remediation techniques is limited (Cullen,Chundamala, Bayley, & Jutai, 2007) especiallyfor social reintegration (McCabe et al., 2007). Al-though intervention studies are being published ata rapid and exponential rate: e.g., 1970s (n = 5),1980s (n = 47), 1990s (n = 125), and 2000s (n =240) (PsycBITE: www.psycbite.com), the quantityand quality of the evidence is patchy and incom-plete (Cicerone et al., 2011). While interventionscan be effective, there is a pressing need for re-search to partial out effective components of com-plex therapies and to focus upon relevant, func-tional outcomes (Cicerone et al., 2011). Lack oftheoretical sophistication in remediation researchis another drawback that leads to vague, non-specific treatments (Whyte & Hart, 2003). Theseissues reflect the fragmented nature of remediationresearch in this field and highlight the need fora coherent framework with which to guide futureresearch and researchers. This article details thedevelopment of a Centre of Research Excellence

(CRE) for Traumatic Brain Injury Rehabilitationwhich has been funded by the Australian NationalHealth and Medical Research Council (NHMRC),commencing in 2012. We have called this CRE‘Moving Ahead: a CRE in Brain Recovery’ to re-flect the notion that the CRE is about growth anddevelopment in terms of research, clinical practiceand ultimately psychosocial outcomes for peoplewith TBI.

We argue that a CRE in TBI Rehabilitationis urgently needed for several reasons. First, thesocial consequences of TBI are complex and pro-found. Increasing social participation requires amulti-faceted approach. Currently, individual re-search groups in North America, the UK and, un-til recently, Australia, are investigating specific is-sues, often taking discipline-specific approaches,with limited collaboration. The establishment ofMoving Ahead with an integrated approach is aworld first, providing a platform to tackle psy-chosocial deficits resulting from TBI on a numberof co-ordinated fronts.

Second, rehabilitation for TBI requires a closerelationship with clinicians to ensure translationof research into practice and to foster a cultureof research in practice. What is known about psy-chosocial competencies after TBI and their reme-diation comes almost exclusively from the alliedhealth field. Australian brain injury rehabilitationcentres lead the world in terms of allied healthpatient care and management. Currently, there arefew formal mechanisms for engaging clinicians inresearch and increasing their involvement in thedevelopment and implementation of cutting-edge,evidence-based therapies. Our CRE has the po-tential to provide a pivotal interface to translateresearch to clinical practice.

Third, currently there is a dearth of research ca-reer opportunities for clinicians from allied healthprofessions, including clinical and neuropsychol-ogists, occupational therapists, speech-languagepathologists and social workers, despite their directrelevance to psychosocial disorders following TBI.Indeed, with the exception of some of the seniormembers of Moving Ahead, there are few healthprofessionals in Australia working in research po-sitions dedicated to brain injury. There are a num-ber of obstacles that mean that once graduates havecommenced clinical careers, it is challenging to at-tract them back to research. Generally, there arefew research opportunities available. Relatedly, amajor hurdle is that the field of psychosocial dis-orders associated with TBI is fragmented, relyingupon specific individuals in separate institutionsconducting independent research. This situation isnot conducive to capacity building or training ofclinical researchers in the multidisciplinary field

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of psychosocial rehabilitation. Moving Ahead willprovide the structure and support for highly skilledclinicians to move into independent research ca-reers via scholarships, postdoctoral fellowships,training programmes, workshops and mentoring.

Fourth, individuals with brain injury are clin-ically heterogeneous and dispersed in the healthsystem, making it difficult to recruit sufficient par-ticipants for large-scale research in any single cen-tre. Significant in-roads into TBI rehabilitation can,therefore, only be achieved through a collective ef-fort to concentrate expertise, enable skills sharing,unify divergent approaches and facilitate data col-lection across sites. Finally, a CRE in TBI Rehabil-itation requires the co-operation and collaborationof an interdisciplinary mix of researchers and clin-icians with proven track records in research andtranslation.

The Conceptual Framework forMoving AheadFrom the Bedside to the BarbequeMoving Ahead works on a model of psychoso-cial functioning (Beauchamp & Anderson, 2010)which recognises that psychosocial deficits fol-lowing TBI arise from a number sources: pre-existing, internal factors (e.g., personality), im-pairment from brain damage, activity limitationdue to loss of skills, and indirect effects such asanxiety and depression. Importantly, they also re-flect external factors, such as social opportunitiesfor participation which provide the context withinwhich skills are exercised. Basic remediation re-search aims to ameliorate impairment of damagedneural, cognitive, emotional processes and activ-ity limitation by training skills. These are criticalcomponents of rehabilitation. But in addition, weneed to maximise relevance, motivation and so-cial opportunities to practice new skills (Ylvisaker,Turkstra, & Coelho, 2005) by tailoring remediationto personalised contexts. We also need to addresssecondary (indirect) effects such as depression andanxiety. Increasing participation, in turn, increasesefficacy of remediation of impairment and skills.

It is All About TimingDifferent deficits impede remediation at differentpoints in the recovery trajectory. For example, im-pairments in fatigue, emotion regulation, speechand emotion perception interfere with early phaseremediation. Self-awareness is especially criticalfor the transition back to the community. Deficitsin communication and social skills may presentmajor limitations when individuals are placed in

demanding social contexts, such as work, schoolor with friends. Furthermore, loss of social op-portunity as a result of the TBI, or failure to en-gage effectively with available social resourcesfollowing return to the community, can deny in-dividuals with TBI the opportunity to participate.The indirect consequences of depression and anx-iety often emerge later on, when the individ-ual is confronted with real-life feedback on im-pairments and limitations. Moving Ahead basesits research activities on a model for psychoso-cial rehabilitation that builds upon the model ofBeauchamp and Anderson (2010) and which addi-tionally operationalises transitions across time (seeFigure 1 with target areas for remediation shaded).By providing remediation at the right time andplace (context) and by engaging community re-sources, we will capitalise on brain plasticity, mo-tivation, opportunities for learning and opportuni-ties for success.

Focus on Evidence-based PracticeReviews in the area of psychological interventionshave consistently concluded that empirically sup-ported models encompass: (1) empirical advancesin understanding structural brain damage, plas-ticity and recovery (e.g., Kleim & Jones, 2008;Robertson & Murre, 1999); and (2) cognitive be-havioural therapy (CBT) approaches (Chambless,1993; McGinn & Sanderson, 2001). Accordingly,the research of Moving Ahead will use these em-pirically supported theoretical frameworks in a co-ordinated research programme spanning direct re-mediation of neural impairments underlying psy-chosocial dysfunction through to the application ofthe latest empirically validated CBT approachesto improve social skills and psychosocial adjust-ment, while taking into account the need for ther-apy adaptations and contextual supports.

Developing a Unified Research ParadigmAs emphasised in their major review (Ciceroneet al., 2011), patient characteristics, e.g., the sever-ity of cognitive impairment and the presence ofspecific impairments, notably executive dysfunc-tion, influence response to interventions and over-all psychosocial outcomes. Conclusions of this andother systematic reviews repeatedly highlight theneed to identify: (1) the characteristics of thosewho benefit from treatment; and (2) componentsof treatment that are effective. It is urgent that wetake stock of current research directions, ratherthan simply proliferate treatment trials. A majorfunction of Moving Ahead is to increase collab-oration across studies in order to: (1) employ acommon framework for measuring outcomes; (2)

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FIGURE 1

(Colour online) Model for rehabilitation emphasising transitions – from impairment to participation – from hospitalto community. Different kinds of rehabilitation targets emerge at different points in these transitions and effectiveremediation needs to be guided by this. Domains (shaded) represent major targets for the CRE.

identify effective components of treatment by us-ing measures specific to each component (target-ing impairment, activity and participation); and(3) examine process variables, e.g., severity andnature of cognitive deficits, working alliance, self-efficacy, treatment expectations and engagement,as mediators/moderators of outcomes. This willprovide a pool of data across sites and studies thatcan be used to identify characteristics of those whobenefit from treatment generally from those whodo not. The collection of data in this standardisedmanner will magnify the value of individual re-search programmes and generate opportunities formeta-analyses.

Research Projects of Moving AheadAll of the research to be implemented in Mov-ing Ahead addresses psychosocial deficits frombasic impairment through to their effects on par-ticipation, and can be categorised as focused on ei-ther self-competency (i.e., self-regulation, fatigue,mood and self-awareness) or social competency(i.e., speech, social cognition, social skills andcommunication).

Self-competencyEmotional dysfunction includes acquired impair-ments in self-regulation of emotion due to neuro-pathology disrupting cortico-limbic neural cir-cuitry (Jorge et al., 2004; Larson, Kaufman,

Schmalfuss, & Perlstein, 2007) and secondary ef-fects of depression, anxiety and related problemswith fatigue and sleep disturbance. Collectively,these symptoms present problems for more than60% of all TBI survivors and are associated withpoorer psychosocial outcomes (Olver, Ponsford,& Curran, 1996; Whelan-Goodinson, Ponsford,& Schonberger, 2008). In addition, impaired self-awareness is a key barrier to successful progress inrehabilitation and is largely unaddressed in con-ventional rehabilitation practice (Ownsworth &Clare, 2006). Individuals with persisting awarenessdeficits have long-term difficulties in regaining in-dependence and work, and maintaining relation-ships (Ownsworth et al., 2007). Moving Aheadfocuses upon these fundamental issues as follows.

Remediating Disorders of Self-regulation: Controland DriveDisorders of control (e.g., anger management) areprevalent, seen in 34–67% of those with severeTBI in the first year of injury (Brooks, Camp-sie, Symington, Beattie, & McKinlay, 1987; Kim,Manes, Kosier, Baruah, & Robinson, 1999) and aremaintained over time (Brooks et al., 1987; Oddy,Coughlan, Tyerman, & Jenkins, 1985). Disordersof drive are evidenced by lowering of arousaland motivation resulting in apathy, difficulties inmaintaining initiative, low spontaneity and cogni-tive flexibility, and are seen in 43–78% of peo-ple with severe TBI (Kant, Duffy, & Pivovarnik,1998; Lane-Brown & Tate, 2009; Oddy et al.,

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1985), with clinically significant degrees of apa-thy occurring in 15% at 18 months post-trauma(Tate et al., 2006). Traditional approaches to im-proving social and emotional behaviour have fo-cused upon skills training and CBT (Alderman,2003; Denmark & Geneinhardt, 2002). Such tech-niques applied to anger management in people withTBI have demonstrated some success (Alderman,2003; Medd & Tate, 2000) although they may bemore successful in the acute stages of recovery.Treatments to address apathy are extremely limited(Lane-Brown & Tate, 2008). Current approaches ofMoving Ahead build upon experimental researchinto CBT but are also investigating biofeedback asa direct remediation technique.

Treatments for Fatigue, Anxiety and DepressionFatigue following TBI has been shown to be as-sociated with attentional impairments, sleep dis-turbance and mood. Light therapy is a safe, non-invasive, non-pharmacological intervention thatacts via a novel photoreceptor system mediatingthe circadian effects of light. Short-wavelength(blue) light has demonstrated efficacy in reducingsleepiness, enhancing reaction time and alleviatingmood disturbance in healthy and patient groups.Members of the CRE based at Monash Univer-sity are conducting a randomised controlled trial(RCT) to examine the effectiveness of blue lighttherapy versus yellow light therapy (placebo) and‘treatment as usual’ on subjective daytime sleepi-ness and fatigue. This novel study is the first RCTof a non-pharmacological treatment for sleepinessand fatigue following TBI. If shown to be effec-tive, Moving Ahead will use knowledge translationmethods to disseminate a therapy protocol to clin-icians.

Symptoms of anxiety and depression are com-mon following brain injury, frequently persist overmany years and even increase with time. Suchsymptoms are often identified by those with TBIand their families as particularly devastating, im-pacting on the capacity for participation within thecommunity. Pharmacological interventions havelimited effectiveness in the general population.There has been little research evaluating the useof psychological treatments, such as CBT, partic-ularly in those with moderate–severe TBI, whosecognitive impairments may impede engagement inand benefit from such therapy. Our CRE is cur-rently evaluating three approaches for reducingmood disturbance, one that is relevant for childrenand adolescents and two for adults.

First, we are currently conducting research us-ing the Cool Kids programme that was developedfor reducing anxiety in non-injured adolescents(Rapee et al., 2006). We have found that a modified

version of this programme has relevance to chil-dren with brain injury. For example, in a single casestudy of an adolescent boy with TBI treated withthe Cool Kids approach, we have shown that al-though typical questionnaire measures were insen-sitive to change, analysis of daily activities iden-tified significant improvements in social participa-tion (Soo, Tate, & Rapee, 2012). The CRE is nowlinked into an RCT of the Cool Kids programme,modified for adolescents with TBI and deliveredvia internet and telephone as well as face to face.

Second, an NHMRC-funded RCT led by Pons-ford and colleagues from Monash University, isevaluating the effectiveness of two interventions:(1) CBT alone, and (2) Motivational Interviewing(MI: a brief intervention aimed at enhancing treat-ment engagement and response rate to CBT) andCBT combined; in alleviating self-reported anxi-ety and depression in adults with TBI. MI uses anumber of specific strategies to explore and resolveambivalence to change (Miller & Rollnick, 2002).Its efficacy has been shown both as a stand-alonetreatment, and as a preparatory intervention prior toother treatment such as CBT (Burke, Dunn, Atkins,& Phelps, 2004; Westra & Dozois, 2006). BothCBT and MI have been adapted specifically for acommunity sample with moderate–severe TBI, inorder to accommodate their cognitive limitations.A secondary aim is to investigate the associationof cognitive factors, including IQ, memory, self-monitoring and self-awareness, with positive re-sponse to the intervention. Results from a pilotstudy provide support for the hypothesised effects(Hsieh et al., 2012). Following completion of thistrial, the Moving Ahead programme will providea platform for translating these manualised inter-ventions to clinicians around Australia.

A third psychological approach is the appli-cation of Acceptance and Commitment Therapy(ACT), including mindfulness-based approaches.ACT represents part of the third wave of be-havioural therapies. It focuses upon enabling peo-ple to re-engage with meaningful life goals and haspromising effectiveness in improving functionalityand well-being in a variety of populations that havepsychological disturbances and/or medical prob-lems (Kangas & McDonald, 2011). Our CRE isdeveloping research into the application of ACTfor those with TBI of varying severity.

Treatment for Self-awarenessSelf-awareness is comprised of two broad skills:‘self-knowledge’, or the ability to accurately per-ceive personal strengths and limitations; and ‘on-line awareness’, which is the capacity to self-monitor and self-regulate behaviour during taskperformance (Toglia & Kirk, 2000). Members of

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Moving Ahead have established a metacognitiveintervention framework that focuses on develop-ing self-awareness of deficits and self-regulationskills through activity participation (Ownsworth,Fleming, Desbois, Strong, & Kuipers, 2006). Thisapproach uses systematic feedback and gradedprompts to target the following processes: (1)learning to routinely stop, check and correct er-rors on daily tasks; (2) reflecting on the meaningof errors on tasks to promote awareness of deficits;and (3) anticipating errors in everyday situationsand planning strategy use accordingly. The optimaltiming for delivery of self-awareness interventionsand their impact on long-term social participationneeds to be determined.

Social Competency – Basic SkillsImpaired social competence is the most distress-ing facet of TBI for individuals and their families(Kinsella, Packer, & Olver, 1991). If not addressed,social isolation and dependence are inevitable. Ba-sic abilities underpinning social competence arefrequently disrupted in people with TBI. Two ma-jor facets of social competence are currently beingtargeted by our CRE – inability to identify emo-tional expressions in others (impaired in 30% ormore of people with TBI) (Babbage et al., 2011;Croker & McDonald, 2005; McDonald & Saun-ders, 2005) and inability to speak clearly and accu-rately (dysarthria), affecting two-thirds of peoplewith TBI) (Cahill, Murdoch, & Theodoros, 2002).

Emotion PerceptionThe neuropsychological mechanisms underpin-ning disorders of emotion perception followingTBI are not well understood. To address this, labsin our CRE based at the University of New SouthWales are exploring the role of emotional respon-sivity and empathy in emotion recognition. Usingskin conductance changes (SCR), muscle move-ment (measured by electromyography; EMG) andheart rate changes, we have found that poor emo-tion perception and empathy are common afterTBI, as are reduced physiological responses (i.e.,arousal and mimicry) to emotional faces (de Sousaet al., 2011; McDonald et al., 2011). However, therelationship between these disorders remains un-clear. Nor do we fully understand the mechanismsunderpinning impaired recognition of emotion invoice. We are, therefore, exploring very early au-tomatic responses to facial and vocal expressionsusing electroencephalography (EEG) and evokedresponse potentials (ERP).

Speech ProductionMoving Ahead is also applying novel electro-physiological and imaging methods to: (1) revealthe neurophysiological basis of dysarthria associ-ated with TBI; (2) identify prognostic biomarkersfor speech outcome; and (3) trial new interven-tion techniques for managing dysarthria. Specif-ically, collaborative work across the Universityof Queensland and Murdoch Childrens ResearchInstitute (MCRI) is using EEG and cutting-edgestructural (e.g., fibre tractography) and functionalmagnetic resonance imaging (MRI) approaches(e.g., functional connectivity analyses) to deter-mine whether there are ‘critical regions’ subserv-ing speech production that, when damaged, placean individual at heightened risk for developingspeech disorder. The longer-term aim of elucidat-ing such prognostic biomarkers is earlier identifica-tion and treatment for ‘at risk’ patients to optimiseoutcomes for those individuals. The final arm ofthis work is the first-ever application of Transcra-nial Magnetic Stimulation (TMS) for the treatmentof dysarthria in adults after TBI. Preliminary workis promising, suggesting that TMS may be a suc-cessful application with long-lasting treatment ef-fects well beyond the period of original treatment(Murdoch, Ng, & Barwood, 2012).

Social Competency – In the CommunityPsychosocial difficulties following TBI peak whenindividuals are faced with the complexities of re-turning home. Opportunities to practise and im-prove deficit skills are maximised when addressedin context and can be enhanced by providing ap-propriate supports. The following projects withinthe CRE examine contextual supports for social–communicative skills from childhood and adoles-cence through to late adulthood.

Facilitating Home LifeChallenging social behaviours in children post-TBI are a major stress for parents. We have modi-fied an established intervention, Signposts, a pro-gramme that utilises cognitive–behavioural prin-ciples, aimed to increase parent knowledge andcompetence in managing a child’s challenging so-cial difficulties. Based on pilot data, a supplemen-tary module specific to TBI has been developedby our team at the MCRI (Woods et al., under re-view), and a pilot study has been completed, inwhich we assessed parents and children pre- andpost-intervention, and at 6 and 18 months, to mea-sure the efficacy of the interventions (Woods, Cat-roppa, Barnett, & Anderson, 2011). Findings arepromising, with improvements post-treatment inparent stress and mental health, as well as child

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behaviour. Importantly, these improvements havebeen maintained over time (Woods, Catroppa, &Anderson, 2012).

Facilitating FriendshipsReturning to study (school, technical colleges, uni-versity) and maintaining friendships following TBIis a challenging process for both the person withTBI and their peers (Mealings & Douglas, 2010;Mealings, Douglas, & Olver, 2012; Shorland &Douglas, 2010). There are two approaches to deal-ing with this issue.

One method is to improve the communicationand coping skills of the person with TBI so thatthey have strategies to use when faced with diffi-cult situations. This approach has been trialled in aproject with adults with severe TBI in the commu-nity, funded by the Victoria Neurotrauma Initiativeled by Douglas and colleagues at La Trobe Univer-sity, with promising results. This communication-specific coping intervention programme has nowbeen modified for use in the context of communi-cation with friends in the return to study environ-ment.

The second approach is to provide famil-iar communication partners with conversationalstrategies to facilitate everyday communication in-teractions. This approach has been the focus of asubstantial body of research led by Togher. Togherand colleagues have developed a communicationpartner training programme entitled TBI Expresswhich has proven successful in improving the inter-actions of people with TBI when talking with theirfamilies (Togher, McDonald, Tate, Power, & Ri-etdijk, 2009; Togher, Power, Rietdijk, McDonald,& Tate, 2012) and paid caregivers (Behn, Togher,Power, & Heard, in press). However, there has beena paucity of research evaluating the effectivenessof working with the friends of people with TBIas they return to work and school. The CRE isexamining a two-pronged approach to deal withthis: (1) teaching young people and adults withTBI coping strategies to manage communicationin the context of friendship prior to return to study;and (2) providing training to friends regarding theTBI with provision of communication strategiesto deal with changed communication behavioursbefore they return.

Facilitating Meaningful OccupationOnly 40% of adults, including older adults, re-turn to work after severe TBI (Ponsford et al.,1995) leaving 60% with ‘free’ time, which, forthe majority, is not spent in meaningful occupa-tion (Tate, Lulham, Broe, Strettles, & Pfaff, 1989),further limiting opportunities to practise/regain so-cial skills. Moving Ahead is, therefore, conducting

work to target disorders of drive to enhance effi-cacy of our Meaningful Occupation Program (Tateet al., 2009) to increase leisure activity.

Transfer of Research to PracticeMoving Ahead is designed, not only to conductquality clinical research, but to ensure this trans-lates to greater effectiveness of remediation forpsychosocial impairments. As such, its charter isto engage the expertise of the broad clinical com-munity. This has two major advantages. By involv-ing and consulting clinicians and stakeholders inthe research process we ensure that the researchprogramme is directed towards studies identifiedas most important, timely and relevant for advanc-ing current practice. Second, such involvement en-sures a direct avenue for the translation of researchevidence into clinical practice via clinicians, andclinical policy via key stakeholders in health anddisability sectors.

Moving Ahead has five approaches to engagewith the broader clinical community.

1. Clinical orientation to research. As all chiefinvestigators of Moving Ahead are clinician-researchers, their clinical experience pervadestheir research, ensuring that research questionsare firmly tied to improving clinical outcomes.

2. Integration with an existing research and ed-ucational organisation. Members of MovingAhead are office bearers, Fellows and/or mem-bers of the Australasian Society for the Studyof Brain Impairment (ASSBI). ASSBI is aself-funded, not-for-profit organisation with thecharter to promote education and research re-garding brain impairment. By engaging ASSBI,Moving Ahead has access to a fully organised,fully funded, clinical outreach programme.ASSBI has a membership of 400 financialmembers comprising clinicians and researchersacross disciplines, providing an expansive net-work of contact with clinicians across geo-graphic regions.

3. Promotion of evidence-based databases.Members of Moving Ahead have devel-oped two freely available databases Psy-cBITE (www.psycbite.com) and SpeechBITE(www.speechbite.com) (see Figure 2). Theseindex all empirical studies that provide dataon the efficacy of treatments for psychoso-cial, speech and other psychologically baseddisorders in people with brain impairment.The databases are well established (2011 hits≈ 1,638,929) and used nationally (≈ 65%) andinternationally (≈ 35%). They make a pivotal

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FIGURE 2

(Colour online) Home pages of PsycBITE and SpeechBITE.

mechanism for transferring research outcomesinto practice.

4. Partnerships with clinical centres nationallyand internationally. Members of the team holdjoint appointments or are affiliated with nu-merous clinical facilities and research institu-tions, providing a system of engagement withmultidisciplinary clinical teams in key neu-roscience and neurorehabilitation units in themost populous states of Australia (NSW, Vic-toria, Queensland), USA, UK, Canada and theNetherlands.

5. A formal model system for engaging with clin-icians in the workplace. Moving Ahead has anestablished and successful model for engagingwith clinicians: the Research and Evidence inPractice (REP) model (Caldwell, Whitehead,Fleming, & Moes, 2008) which is designed toengage clinicians as consumers, participatorsand generators of research evidence. Our appli-cation of this model is detailed in the followingsection.

Engaging Clinicians as Consumers

The focus of Moving Ahead on developing a uni-fied framework for treatment research has directimplications for clinicians and should ultimatelyprovide real benefits for those working clinically.Most rehabilitation trials focus on treatment ofspecific problems in isolation. In practice, clientspresent with a myriad of psychological difficul-ties which should be treated concurrently for opti-

mal outcomes. Clinical profiles of participants withTBI differ not only due to cognitive impairmentbut also according to levels of emotional distress,awareness of deficits and motivation (Fleming,Strong, & Ashton, 1998). Intervention approachesneed to be flexible with respect to focus and in-tensity. At present, there are no evidence-basedguidelines to assist clinicians to match approacheswith different clinical presentations. To developguidelines there needs to be consistency in mea-surement across treatment trials to allow them tobe collated and compared. As a world first, MovingAhead will develop a uniform approach to treat-ment research by collecting common predictor andoutcome measures across treatment studies, stan-dardising occasions of outcome measurement andusing measures of impairment, activity and par-ticipation specific to each treatment component.The results of this approach will assist cliniciansto make informed decisions regarding what worksand for whom, and will be available via the usualclinically relevant publications and conferences.

Moving Ahead has developed a website(www.moving-ahead.com.au) to interface withclinicians and researchers (see Figure 3). Oneof the major functions of this website is toprovide access to the databases PsycBITE andSpeechBITE. Our research (Perdices et al., 2006)shows that for TBI rehabilitation, less than 30%of practitioners consult the literature to deter-mine their choice of intervention. By integrat-ing PsycBITE and SpeechBITE into the Mov-ing Ahead website, along with links to sisterdatabases PEDro (www.pedro.org.au), OTseeker

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FIGURE 3

(Colour online) Home page of Moving Ahead.

(www.otseeker.com) and other TBI treatment web-sites such as http://www.projectlearnet.org/ we areproviding an internet platform to facilitate knowl-edge transfer. The website also provides informa-tion regarding other activities and resources ofMoving Ahead, opportunities for research partici-pation and feedback, and links to useful websitessuch as advocacy and support groups.

Despite the burgeoning literature on treatmentsfor the psychological consequences of TBI, and theexpectation that clinicians will use evidence-basedprinciples in their work, many do not know howto interpret the quality of research data or eval-uate conclusions (Metcalfe et al., 2001; Young,Glasziou, & Ward, 2002). We have developed anon-line program that provides training in how toevaluate the methodological quality of treatmenttrials, using step-by-step tutorials, case examplesand mastery quizzes. Moving Ahead will promoteand disseminate this free training (launched at the

9th Conference of the Neuropsychological Re-habilitation Special Interest Group of the WorldFederation of Neuro Rehabilitation (WFNR) inBergen, July 2012) to clinicians and researchersvia PsycBITE and SpeechBITE.

Another major strategy for engaging clin-icians as consumers is via the publication oftreatment manuals and resources. The Ameri-can Psychological Association (APA) taskforceon empirically based psychological treatmentsinsists that treatment manuals be manda-tory (Chambless, 1993) but manuals informedby research rarely reach clinicians. MovingAhead is collaborating with ASSBI Resources(http://www.assbi.com.au/assbiresources.html) topublish evidence-based treatment manuals arisingfrom research. To date, four such manuals havebeen published. These are linked on the MovingAhead website, ensuring easy access to cliniciansin rural and city areas.

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Yet another initiative is to generate rehabilita-tion summaries. Despite APA recommendations,many evidence-based treatments in the field ofTBI use experimental procedures, are based uponsingle-case designs, or simply lack published man-uals, making it difficult for clinicians to readilyaccess an overview of possible treatments. To ad-dress this, PsycBITE has a series of rehabilita-tion summaries. These summaries provide a stan-dardised, concise, structured overview of the tech-niques, time frame, resources and outcome mea-sures used in published treatment trials, along witha rating of the methodological quality of the trial.PsycBITE currently has 150 summaries of inter-vention for different cognitive and behavioural dis-orders, and it is intended that Moving Ahead willpublish a set specific to evidence-based treatmentsfor psychosocial disorders in children and adultswith TBI. This will be a valuable resource for su-pervisors and clinicians in situations where theyare unfamiliar with the current literature, treat un-usual conditions, practise in remote areas or havelimited access to resources. The function of reha-bilitation summaries is not to replace the originalarticle but to provide more detailed and targetedinformation than is available in a journal abstract,so the clinician can quickly grasp the elements ofthe therapy programme, the target behaviours orclinical condition that was treated, efficacy of thetherapy and the methodological quality of the trial.

In addition to the ‘virtual’ access providedby the Moving Ahead, PsycBITE, SpeechBITEand ASSBI websites, regular face-to-face presen-tations are part of the platform of Moving Ahead.At a local level, continuing education workshopswill play an important interface between clini-cian and researchers. This programme will occurwithin ASSBI’s well-established Continuing Ed-ucation programme, which organises workshopsacross Australia and the Pacific region, designed tomeet the needs of local clinicians. Moving Aheadwill also interface with annual meetings of ASSBIand other relevant societies in the region (e.g., theAustralian Psychological Society College of Clin-ical Neuropsychologists) and further afield (e.g.,the International Neuropsychological Society, theNeuropsychological Rehabilitation Special Inter-est Group of the WFNR, International Brain InjuryAssociation, International Neurotrauma Society)to present symposia and workshops showcasingrecent research.

Engaging Clinicians as StakeholdersThe organisational governance of Moving Aheadis designed to ensure that clinicians have directinput into the policies and research directions of

the CRE. A Stakeholders Advisory Board com-prises interested clinicians and/or consumer groupsand provides input into whether proposed researchprojects meet their needs, mechanisms for trans-lation of research findings into practice and newresearch directions.

Engagement of Clinicians as ResearchersA major directive of Moving Ahead is to engageclinicians as researchers, and a number of strate-gies are in place. For example, where appropriate,clinicians who are engaged in the collection of re-search data and/or delivery of experimental treat-ments will be affiliates of the CRE. Indeed, wealready have many talented clinicians involved inexisting projects. The CRE will also work closelywith key clinicians to assist development of theirown research directions. Support mechanisms in-clude opportunities for a research mentoring re-lationship between clinicians and local membersof Moving Ahead, seeding funds for new researchproposals, pilot studies or development of grantapplications by clinicians, part-time postdoctoralfellowships and PhD scholarships.

Training the Researchers of TomorrowMoving Ahead’s strategy to build research capac-ity is to emulate other groups, such as medicaldoctors and scientists, who typically conduct re-search in a supported environment with large es-tablished teams (e.g., in significant public healthfields such as dementia, cancer or stroke research).This provides a number of opportunities for goodtrack record development at early career stages.Moving Ahead can provide this kind of opportu-nity. Further, the CRE has a number of strategies inplace to attract new researchers and allied healthclinicians into the field of brain injury research,including working collaboratively with cliniciansand advertising via extensive university, researchinstitute and clinical networks, and the use of itsown website and that of ASSBI.

Training Clinical Researchers at DifferentLevels of Expertise

The strategic plan focuses on training and de-veloping clinician-researchers who will enter theprogramme at different skill levels: (1) postdoc-toral researchers; (2) clinical affiliates who are ex-perienced clinicians without PhDs; (3) PhD stu-dents; (4) Masters and Honours students. Posi-tions directly funded by Moving Ahead are adver-tised nationally and internationally via our insti-tutions, networks and the Moving Ahead website.

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Additional PhD, Masters and Honours students af-filiated with Moving Ahead are funded via externalschemes or existing programmes. All will be en-couraged to develop new research projects benefit-ing from the collaborative opportunities affordedby the CRE network.

Researchers in training with Moving Aheadwill have opportunities to gain a variety of spe-cialist skills that are internationally unique (e.g.,speech pathologists with training in neurosciencetechniques; clinical psychologists trained in psy-chophysiology) and trans-disciplinary (across clin-ical and neuropsychology, neurosciences, occu-pational therapy and speech pathology). Theywill be exposed to training in: (1) specific con-ceptual areas (e.g., the World Health Organisa-tion ICF model, mechanisms and specific be-havioural impacts of TBI of varying severity,common co-morbidities of TBI); (2) methodol-ogy (e.g., epidemiological design and n-of-1 tri-als, neuronal modelling, qualitative research ap-proaches, use of functional magnetic resonanceimaging (fMRI)); (3) practical expertise in the useof cutting-edge equipment and analysis techniques(e.g., electrophysiological methods of EEG, ERP,electromagnetic articulography; MRI data anal-ysis techniques); and (4) research analysis andwriting skills (e.g., meta-analysis and systematicreviews).

These skills will be gained via a system oftraining strategies. First, opportunities will be pro-vided for short- and long-term visits by newresearchers to collaborative institutions to gainhands-on training in techniques critical to their re-search projects. Moving Ahead will also run annualtraining workshops at alternating sites, the topicof training chosen to be of maximum benefit tonew research team members, e.g., designing andwriting competitive large-scale funding applica-tions, development of clinical guidelines and trans-lational research. Third, in addition to the daily su-pervisory support trainees receive, there will be asystem of formal mentoring of postdoctoral/PhDstudents by members of the CRE other than theirdirect supervisor.

Engaging with the International ResearchCommunityMembers of the CRE have links with institutionsacross the USA, Canada, UK and Europe, ensur-ing that Moving Ahead is contextualised withinthe worldwide clinical research community andmaximising opportunities for translation. In ad-dition, Moving Ahead has an Expert AdvisoryBoard consisting of internationally renowned re-searchers in brain recovery and rehabilitation: Pro-

fessor Sureyya Dikmen, University of Washington,Seattle, USA; Professor Jonathan Evans, Univer-sity of Glasgow, Scotland; Professor Tessa Hart,Moss Rehabilitation Research Institute, Philadel-phia, USA; Associate Professor Mary Kennedy,University of Minnesota, USA; Professor HarveyLevin, Baylor College of Medicine, Texas, USA;Professor Brian Levine, University of Toronto,Canada; Professor James Malec, Mayo Clinic, In-dianapolis, USA; Professor Lyn Turkstra, Univer-sity of Wisconsin, USA; Professor Sheri Wade,University of Cincinnati, USA; Professor JohnWhyte, Moss Rehabilitation Research Institute,Philadelphia, USA; and Professor Barbara Wilson,Medical Research Centre, Cambridge, UK. Mem-bers of the Expert Advisory Board have been cho-sen to provide input on the scientific directions ofMoving Ahead, especially with respect to standar-dising outcome measures, translation of researchinto practice and strengthening collaborations.

Governance of the CREThe CRE includes key health disciplines (psychol-ogy, neuropsychology, speech pathology, occupa-tional therapy) and is integrated with educationaland clinical institutions in Australia and interna-tionally. It has a team of Associate Investigatorswho will be pivotal in facilitating the translationof research into practice. The following AssociateInvestigators help co-ordinate CRE activities onclinical sites: Associate Professor Ian Baguley,Research Director, Westmead Brain Injury Unit,Sydney; Dr Ron Hazelton, Director, Brain InjuryRehabilitation Unit, Princess Alexandra Hospital,Queensland; Dr Clayton King, Director, Brain In-jury Unit, Royal Rehabilitation Centre, Sydney;Professor John Olver, Director of Rehabilitation,Epworth Hospital, Melbourne; Associate Profes-sor Adam Sheinberg, Director, Victorian Paedi-atric Rehabilitation Service, Melbourne; Dr Gra-hame Simpson, Research Director Liverpool BrainInjury Unit. Other associate investigators provideunique research skills to our team: Associate Pro-fessor Cathy Catroppa, MCRI, Melbourne (pae-diatric rehabilitation); Professor Glynda Kinsella,Latrobe University, Melbourne (older adults withTBI) and Dr Robert Heard, University of Sydney(expertise in statistical analysis).

Thus, Moving Ahead builds upon existingnetworks to establish a system of engagementwith multidisciplinary clinical teams in key neuro-sciences and neurorehabilitation units nationallyand internationally. Both the Expert and Stake-holder Advisory Boards will ensure that the re-search goals and research quality meet interna-tional standards, ensure accountability, provide

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FIGURE 4

(Colour online) Governance of Moving Ahead and Key Success Indicators of increased collaboration and researchtraining.

input into the research priorities of the CRE andfacilitate translation of research into practice. Thestructure of governance of the CRE is depictedin Figure 4. The CRE Board, comprising Chiefand Associate Investigators will make decisionsregarding the prioritisation and implementation ofresearch and funds. The Board of Management willbe involved in training and supervision of doctoraland postdoctoral students. To maximise skill shar-ing, funds are allocated for students to travel acrosssites, to learn new skills and to provide opportuni-ties to work collaboratively.

Communication occurs via monthly gover-nance tele-meetings and one face-to-face meet-ing organised around training meetings and/or atASSBI annual conferences. The Moving AheadExecutive meet in person or by teleconferencemore frequently, as required, and communicateswith the CRE Board between meetings. The web-site plays a pivotal role in the dissemination and ex-change of information. Both the Expert AdvisoryBoards and the Stakeholder Advisory Board are tomeet annually with the CRE Board via webcamin separate consultative meetings. These meetingswill facilitate feedback from the advisory boards onCRE policies and research directions for the com-ing year. Communication between other membersof the CRE occurs via the training and researchseminars, cross-facility visits and mentoring.

ConclusionsMoving Ahead provides a model for a Centre ofResearch Excellence in TBI Rehabilitation thatis unique in the world. It represents a signifi-cant concentration of talent in this field, creat-ing the potential for major gains in understand-ing the social consequences of TBI and ways ofameliorating these for the benefit of people withTBI and their families. It provides the opportu-nity for researchers currently working in differ-ent domains (education, research, service provi-sion) to share skills in specialist technologies andremediation techniques, to combine research ap-proaches, expand data collection and establish col-laborative databases and build work-force capac-ity. TBI is a major source of disability and new,innovative inroads are needed. Finally, we believewe are Moving Ahead. www.moving-ahead.com.au

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