Vocational rehabilitation after traumatic brain injury: Models and services

Transcription

1 NeuroRehabilitation 31 (2012) DOI /NRE IOS Press Vocational rehabilitation after traumatic brain injury: Models and services Andy Tyerman Community Head Injury Service, The Camborne Centre, Jansel Square, Aylesbury, Buckinghamshire, HP21 7ET, UK Tel.: ; Abstract. Background: A recent systematic review suggests that around 40% of people with traumatic brain injury (TBI) return to work (RTW). Yet in the UK currently only a small minority of people with TBI receive vocational rehabilitation (VR) to enable a RTW. Agencies with an interest in developing such services are likely to favour different models of VR. Objective: The primary objective of this paper was to review models of specialist VR after TBI and their outcomes to inform service development across relevant agencies. Method: A literature review on VR after TBI was undertaken in MEDLINE, EMBASE and PsychINFO (from 1967 to date). Papers reporting models of VR were selected for more detailed consideration. Results: Illustrative examples of VR models are outlined: brain injury rehabilitation programmes with added VR elements, VR models adapted for TBI, case coordination/resource facilitation models, and consumer-directed models. Models differ, both within and across these four broad categories, in provision of core TBI rehabilitation, work preparation, work trials and supported placements. Methodological variation limits direct comparison of outcomes across models with few comparative or controlled studies. Conclusions: There is evidence to support the benefits of a wide range of models of specialist VR after TBI. However, there remains a need for controlled studies to inform service development and more evidence on cost-effectiveness to inform funding decisions. Keywords: Brain injury, return to work, vocational rehabilitation models 1. Introduction Return to work (RTW) is a key element in quality of life and life satisfaction for people with traumatic brain injury (TBI) [12,28,48,62], yet only a minority return to employment [36,59,70]. Lack of employment after TBI has major economic implications [6,20,31, 39]. The provision of vocational rehabilitation (VR) to enable a RTW after TBI is a core component of community rehabilitation [4,21,37,55]. The extent of difficulties in RTW after severe TBI were highlighted in a neurosurgical follow-up study in Glasgow with 86% employed pre-injury but just 29% at 2 7 years [5]. Whilst few of this latter group received rehabilitation, early outcome studies from neurorehabilitation centres in the UK were disappointing with RTW in the region of 35 40% [29,46,73]. Coetzer et al. [10] highlight the challenge of RTW in an economically disadvantaged rural area of North Wales with employment falling from 80% pre-injury to just 25% overall and from 58% to 15% for those with severe TBI. In a multi-centre study of the Model Systems TBI programs (which include access to VR services) in the US, competitive employment rates were 23% at 1 year, 17% at 2 years and 25% at 3 years and under 40% even for those previously employed [59]. In a subsequent study the degree of job instability (27%) was highlighted, although competitive employment rates rose from 35% at one year to 37% at two year and 42% at 3/4 years [36]. In an Australian rehabilitation follow-up 33% of those employed prior to injury were employed full-time and 9% part-time at two years [53]. However, by 5 years, 32% of those employed at two years were no longer employed and, of those at school at the time of injury, only 29% were employed [47]. A recent sys- ISSN /12/$ IOS Press and the authors. All rights reserved

2 52 A. Tyerman / Vocational rehabilitation after traumatic brain injury: Models and services tematic review of RTW after TBI for those previously in paid employment or voluntary work is reported by van Velzen et al. [70]. Pooling figures across 35 TBI studies (after excluding outliers), RTW rates of 40.7% at one year and 40.8% at two years were reported. Numerous reports have identified a wide range of factors that predict RTW after TBI in specific study populations. However, in a meta analysis of 41 studies Crepeau and Scherzer [14] found that the majority of factors were only weakly or moderately related to RTW. In a subsequent review of 50 studies Ownsworth and McKenna [50] found that the factors most consistently associated with RTW included pre-injury occupational status, functional status at discharge, global cognitive functioning, perceptual ability, executive functioning, involvement in VR services and emotional status. However two recent systematic reviews found only limited evidence to support the prognostic value of such factors [44,69]. Whilst noting that injury severity and lack of self-awareness appear the most significant factors, Shames et al. [61] concluded that there appears to be a complex interaction between pre-morbid characteristics, injury factors, post-injury impairments, personal and environmental factors after TBI, which influences RTW and makes prediction difficult. Whilst definitive predictive factors across studies have proved elusive, there have been numerous studies documenting the challenges facing people with TBI experiencing difficulty in RTW. This includes a marked reduction in cognitive and motor skills, a wide range of subject complaints (somatic, cognitive, behavioural, and communication/social), difficulties with behaviour and social interaction at work, social and environment/ organisational obstacles,health and safety concerns and difficulties in work attitude, skills, performance and behaviour. These employment-related concerns stem from a variety of sources including assessments by VR providers [18,67]; family members [79]; vocational practitioners [51]; calls to the Job Accommodation Network [25]; and feedback following separation from supported employment placements [35]. In spite of the above challenges, Shames et al. [61] expressed the view that a significant proportion of people with TBI (including those with severe injuries) areabletortw ifsufficient and appropriate rehabilitation effort is invested. However it was noted that the model of VR employed varies greatly depending on the location and the type of health care system. In the UK all neurorehabilitation services are expected to identify and address vocational needs, with people with complex needs referred to specialist VR programmes [16]. In a survey of VR provision after acquired brain injury (ABI) in the UK, 62% of neurorehabilitation services reported that they address vocational issues but only 8% provided specialist VR [17]. However 80% referred on to VR services, provided by a variety of agencies including the National Health Service, independent brain injury services, VR providers and further education providers. However it was estimated that VR provision was less than 10% of that required with very few services geared specifically to ABI. With limited opportunities for expansion in provision there remains a need for development of specialist VR provision in the UK. However, agencies with an interest in developing such services are likely to favour different models of VR. The primary objective of this paper was to review models of specialist VR after TBI and their outcomes to inform service development across relevant agencies. Challenges in developing specialist VR services will be illustrated by experience in the UK. 2. Models of brain injury vocational rehabilitation A variety of models of VR after TBI have emerged over the last 30 years. Some key models were identified previously as part of the development of guidelines on VR after ABI in the UK [8]. These were supplemented by a review of the literature in MED- LINE, EMBASE and PsychINFO from 1967 onwards, using the following thesaurus terms: (1) BRAIN IN- JURIES/Exploded; (2) REHABILITATION, VOCA- TIONAL/Exploded; and (3) 1 and 2. Available abstracts were reviewed and papers reporting models of VR after TBI selected for more detailed consideration. Specific programme examples with published outcomes were selected to illustrate the range of models in clinical practice. These include brain injury rehabilitation services with integrated or added VR elements, VR models adapted for TBI/ABI, case coordination models and consumer-directed models. Some key examples are outlined below ABI programmes with integrated or added vocational components Some models of VR after TBI are rooted in brain injury rehabilitation but with specificvrelements,either integrated within the programme or added as a supplementary phase. An early example was the specialist therapeutic workshop environment developed for brain-

3 A. Tyerman / Vocational rehabilitation after traumatic brain injury: Models and services 53 injured soldiers at Loewenstein Rehabilitation Hospital, Israel [57]. This included psychotherapy, cognitive re-training, training in use of aids, group and family work, combined with elements of VR (i.e. vocational assessment, exposure to work and job placements). Therapeutic gains were noted within this sheltered therapeutic milieu but with less success in generalising these effects outside this environment. One of the most influential ABI models has been the New York University Head Trauma Program in which VR elements were added to out-patient brain injury rehabilitation [2]. The programme involved three phases: (1) remedial intervention (intensive individual/group work 4 days a week for 20 weeks, focussing on cognitive remediation, self-awareness/acceptance and social skills), (2) guided voluntary occupational trials (3 9 months) and (3) assistance in finding suitable work placements. The occupational trials (generally within the university medical centre complex) involved work under the guidance/supervision/tutoringof a vocational counsellor. In the placement phase participants were assisted in finding suitable work, in familiarisation with the new job and, when needed, in making initial adjustments to the new work environment. Outcomes are reported for 94 people with very severe TBI entering the programme at on average 3 years post-injury. Of these previously unemployable/unproductive participants, 84% were considered to have the ability to engage in productive endeavours on completion of the occupational trial phase (63% at a competitive level, 21% in a sheltered/subsidised level). The great majority were employed over the next three years and employability ratings held up well at 3 years [2]. Numerous examples of holistic out-patient ABI programmes with VR elements have been developed both in the USA, where 5 of 16 TBI Model Systems programs utilised such an approach [23], and also in Europe, for example in Denmark [63], the UK [78], Finland [60] and Sweden [3]. Early interventions to support people with TBI through a managed return to previous work under special conditions following post-acute rehabilitation were reported by Johnson [29] at Addenbrooke s Hospital, Cambridge, UK. This might include part-time work, easier work (i.e. easier job or restricted duties), a work trial (same or different job), an informal return (unpaid, reduced/flexible hours), liaison with employers, training to address specific work problems, workplace support (e.g. by a work colleague) and/or tolerance (e.g. about unscheduled days off). A successful RTW was achieved by 38% of people with severe TBI a further 28% attempted but failed to RTW. In a 10 year followup 34% were employed full-time, 10% part-time with 6% in sheltered work [30]. The Working Out Programme, Community Head Injury Service, Aylesbury, UK, was developed for those who had been unable to return to previous work. This programme blends ABI rehabilitation and VR through flexible individually-tailored access to four overall programme components: vocational assessment, work preparation, voluntary work trials and supported work placements [66]. The specialist assessment process combines interviews with formal testing and feedback from employers and/or observation of practical activities in the workplace or on VR activities in the community. The work preparation phase integrates elements of VR (i.e. work preparation group, VR activities working with voluntary organizations in the community, individual work projects and vocational counselling) with access, as required, to core ABI rehabilitation elements (e.g. educational programme, cognitive rehabilitation group, psychological support group, and individual psychological therapy). Individually selected voluntary work trials are set up with local employers with on-site job coaching (when required) and off-site support including a fortnightly placement support group. Clients are then assisted in finding, applying for, setting up and establishing themselves in work placements with ongoing monitoring and support and on-site job coaching, as required. Once established there is usually a phased withdrawal of support but with ongoing access to a placement support group and open re-access to further guidance and support, as required. In the R&D phase of the programme 40 people with severe TBI completed the programme: 50% returned to paid employment or vocational training with another 35% to permitted work or voluntary work, with outcomes maintained at one and two year follow-up [68]. The programme was broadened subsequently to include other ABI and complex long-term job retention interventions. Updated VR outcomes (64% paid employment or vocational training) were reported by Tyerman and Tyerman [65] Vocational rehabilitation models adapted for brain injury A contrasting approach has involved adaptation of existing VR models (e.g. supported employment for people with learning disabilities) for use with people with TBI or ABI. The primary VR model adapted for ABI is the supported placement model developed at

4 54 A. Tyerman / Vocational rehabilitation after traumatic brain injury: Models and services Virginia Medical College [77]. Characterised by onsite training, counselling and support by a job coach, this model has four phases: Job placement: matching job needs to abilities/potential, encouraging communication, establishing travel arrangements/providing travel training, and analysing the job environment to verify potential obstacles. Job site training and advocacy: behavioural training (e.g. skills, time-keeping, behaviour and communication) and advocacy on behalf of client (e.g. orientation to workplace, communication between all parties, counselling about work behaviours). Ongoing assessment: evaluation from both the supervisor and client. Job retention and follow along: regular on-site visits, phone calls, reviews of supervisor evaluations, client progress reports and family/caretaker evaluations. Of 53 people referred at on average 7 years after severe TBI, 41 were placed in competitive employment with 71% remaining in work at follow-up [76]. This required an average of 291 hours of job coaching. In an analysis of average costs, 73 clients (referred on average 10 years after TBI) required 245 hours of intervention over 18 weeks to achieve job stabilization, plus 2.24 hours per week of support to enhance job retention over the first year. Total average costs were $10,198 [74]. In a long-term follow-up of 59 people with TBI (91.7% severe) the average number of months of employment was months. Whilst over half worked for less than two years, 25% worked for over 7 years and 10% for over 12 years [75]. Factors leading to separation from such placements were reported by Sale et al. [58]. The most common primary factors were (1) interpersonal relationships 32%, (2) employment setting issues (e.g. change in supervisor/assigned duties, perceived lack of upward mobility, and poor match between client preference/ability and job characteristics) 26% and (3) mental health, substance abuse or criminal activity 24%. However the majority of separations involved multiple reasons. A supported placement model has been adopted by other providers, especially in the US where 6 of 16 TBI Model Systems programs were reported to use this approach [23]. This model was also adapted by Rehab UK and Momentum in the UK. The Rehab UK programmes in Birmingham, London, Newcastle incorporated supported placements following a centre-based pre-placement VR phase in a three stage process [42]: pre-placement work preparation: focusing on compensatory strategies, work-related social skills, training in numeracy, literacy and information technology, self-awareness/abi knowledge and identification of realistic and appealing vocational goals. in-situ vocational trial phase: work placements in real settings sourced, overseen and monitored by a job coach, who supports both the client and the employer. final placement phase: support with job search, job applications/interviews and job coaching into new work role with follow-up support for up to 5 years. The following vocational outcomes were reported for 232 people with ABI (62% with TBI) after on average 50 weeks on the programme: paid competitive employment 41%, mainstream training/education 15%, voluntary work 16%, discharged to other treatment 15% and withdrew from programme 13% [42]. A flexible, highly individualized, VR model was developed in the Work Reentry Program at Sharp Memorial Rehabilitation Center, San Diego [1]. This focuses on the least restrictive employment environment that matches the individual s interests, skills and abilities. With a philosophy that there is more than one blueprint for RTW after TBI, the programme includes flexible access to elements of both work rehabilitation (i.e. vocational evaluation, simulated work samples, work hardening, work adjustment experience, vocational counselling and job seeking/keeping skills) and supported placements (including on-site job coaching and an off-site adjustment/support group). These are drawn on according to clients individual competencies, abilities, aptitude, potential and preferences. Clients received typically about 60 hours of input, significantly less (around 41 hours) for those returning to previous employment work [22]. Of 142 clients with TBI (of variable severity), who had been unable to obtain or sustain RTW, 65% obtained employment within one year, 75% within the study 45 month observation period and 55% remained in work at the last follow-up. Of those successful in RTW, half were working fulltime and 75% more than half-time, with 24% returning to their previous employer. In the Community-Based Training Programme, Rehabilitation Institute of Michigan, Wall et al. [71] describe a 16 week programme that combines work adjustment, training and supported employment. This focuses on serving economically disadvantaged people, who often have limited work histories. An individual-

5 A. Tyerman / Vocational rehabilitation after traumatic brain injury: Models and services 55 ized return to work plan was developed for each client. This started with an week unpaid training phase in one of 15 job sites within the medical center in order to develop general work skills and behaviours in a work adjustment model, supported by a job coach. The person was then assisted in identifying and obtaining a competitive position, with transitional job coaching support. Follow-up services were provided at intervals of 1, 2, 3, 6 and 12 months, with additional support as required. Outcomes were reported for 38 people with neurological conditions (31 with TBI), of whom only 37% were in work at time of onset. At months follow-up (on average 9 years post-injury) 38% were employed, but only 58% completed the programme. Of those completing the programme 59% were competitively employed, 24% unemployed with 18% still within the placement process [72]. The average cost of the programme was $4299 per person. Recognising lower rates of access and less positive vocational outcomes for people with TBI through state vocational rehabilitation [32], O Neill et al. [49] described an enhanced Program Without Walls (PWW) in New York. In terms of assessment an assigned PWW staff member reviews neuropsychological results, evaluates vocational interests, achievement and aptitudes and undertakes a functional community assessment of capabilities/skills. Following assessment the PWW member sets up, observes and discusses mock job interviews, helps to identify an appropriate job, reviews the job (e.g. requirements, environment, structure, supervision) and helps with learning, integration and maintaining work performance with ongoing support. In a controlled study 21 people with TBI receiving PWW were compared with 21 matched controls (age, sex, ethnicity, education but not TBI severity) receiving traditional state VR (i.e. individual RTW plan, services from outside agencies, progress monitoring). Of the consumers choosing PWW, 57% were successfully placed compared with 24% receiving traditional state VR. The PWW group worked on average 32 hrs per week (compared with 17.8 hrs) and earned higher average weekly earnings ($329 compared with $124). The PWW additional costs were just $260 greater ($3586 vs. $3326) [49]. An alternative VR model is the Coworker as Trainer Project in Seattle, Washington and Minot, North Dakota [15], drawing on experience of a co-worker training model for youths with cognitive and behavioural difficulties. Key components included formal assessments, short-term work trials or job tryouts (to assess skills, determine support needs), a psycho-educational group (to discuss adjustment and vocational issues), individualised job matching and training of co-workers trained in a specified teaching sequence (i.e. verbal instruction, model, observe, coach). The employment specialists monitored progress and provided suggestions to coworker trainers and participants. Of nine participants with severe TBI receiving the co-worker model at on average 10 years post-injury, 7 were employed Case coordination/resource facilitation models Some models have vocational case coordination as a core feature, facilitating the VR process, in liaison with other rehabilitation, vocational and community services. A Vocational Case Co-ordinator model at the Mayo Medical Centre, Minnesota, integrates medical and vocational services through a brain injury vocational co-ordinator based in the medical centre, who links with community and vocational services. Key elements of the role include the integration of vocational goals into core rehabilitation, assessing vocational readiness, developing comprehensive return to work plans, providing vocational counselling/evaluation and adjustment to disability counselling, linking with local work rehabilitation centres, completing on-the-job evaluations, educating employers and providing follow-up support [9]. Of 80 participants with ABI (52 with TBI) seen at on average 64 months post-onset, 40% were placed in a job within 3 months (most to competitive employment) and 70% within 12 months (most in community-based employment). In a replication study 138 participants entered the project on average 3.5 years (median 0.6 years) after ABI (61% TBI); 84% were unemployed and the remainder were failing at work. Average time to placement was 132 days. At one year after placement 80% remained in community-based employment (56% with no support) [41]. A case co-ordination approach was identified in 5 of 16 TBI Model Systems programs in the USA [23]. A client-centred ABI vocational case management model is also provided by the Australia Commonwealth Rehabilitation Service in Melbourne, Australia [45]. Clients seen at a median of 21 weeks postonset are allocated a rehabilitation consultant, with whom they work one-to-one for an average of 36 hours. In an audit of 27 files, the minimum number of different interventions used by 7 practitioners was 14. Work training placement was rated the most effective, followed by graded return to work programmes, teaching compensatory strategies, coach-

6 56 A. Tyerman / Vocational rehabilitation after traumatic brain injury: Models and services ing clients regarding the hidden job market, vocational counselling and coaching regarding work behaviours. Post-placement support included telephone calls to client, telephone calls to employer, scheduled workplace visits, ongoing support/counseling outside work hours and s to clients. All of these mechanisms were rated positively, although the most highly rated ( s to clients) was only used by two practitioners. The employment rate for those completing the programme with ABI was 50% [45]. Recognising poor coordination, limited or scattered specialized services and providers lacking specialized skills, Trexler et al. [64] describe a small prospective controlled randomised trial of Resource Facilitation (RF). Resource facilitators contact participants every two weeks and organise regular case conferences. Services focus, when appropriate, on pro-actively engaging former employers in a RTW plan. Employer education, titrating RTW schedules and functions, and facilitating utilisation of job supports through both clinical and employment specialists (in collaboration with state vocational rehabilitation agency) were common strategies. Mean RF intervention was just 10.6 hours (median 8.0). At 6 month follow-up, 64% of 12 people with ABI who received RF were employed, compared with 36% of 11 people who received standard follow-up Consumer-directed approach An alternative model of VR is provided by a more consumer-directed approach in which people with ABI play a major role in running the programme. The Clubhouse model, developed originally to provide peer support for people with psychiatric conditions, is reported to have potential in assisting people with ABI in RTW. This is a consumer-directed, community-based, day program that is operated by and for its members [26]. Most members have been considered to be unsuitable for VR or have been unsuccessful in past job placements. Staff are deployed opportunistically according to member preferences, goals and activities, acting in a facilitative rather than a directive role reviewing progress, establishing goals and identifying resources. Members are involved in centre based tasks within work units selected by participants, focusing on practical skills. Those with the requisite skills are supported in seeking paid positions in the community. Over a 3.5 year period in one Clubhouse 24% of members progressed to compensated community work experience, 9% participated in transitional employment settings and 18% entered competitive community employment, of whom half remained employed [27]. Noting that professional services are not always available to support people with ABI in RTW, Kolakowsky-Hayner and Kreutzer [34] described a selfdirected approach with questions provided in a selfguided therapeutic RTW program. Whilst no outcomes were reported for this approach, Niemeier et al. [43] reported a controlled trial of a Vocational Transitions Program (VTP). This is a consumer-driven, manualized, employability-enhancing intervention, for people with ABI who were attending work-centred clubhouses in Virginia. The 20 group sessions follow a similar 5-part format: (1) discussion of a typical challenge after ABI and how it may affect RTW, (2) a brief survey or questionnaire of clients own experiences, (3) a skit depicting ways of coping or a compensatory strategy, (4) demonstration of strategies and ideas for addressing ABI challenges, and (5) wrap-up time to reinforce the session. Modestly significant treatment effects were reported for both employment and overall productivity (i.e. working and/or volunteering). In the VTP group (n = 39) the percentage working increased from 13.5% pre-treatment to 23.1% posttreatment. Productivity also increased slightly from 75.7% to 80.8%. In contrast in the control group (n = 32) the percentage working fell from 26.9% to 14.3% and productivity fell from 65.4% to 46.4%. 3. Effectiveness of brain injury vocational rehabilitation The above models of VR after TBI report generally positive RTW with in most cases more than half the group returning to paid employment the relatively low figures for the Clubhouse studies are not surprising given the nature of the population involved. Direct comparison of outcomes is not possible as the programmes differ in target population (TBI vs ABI), severity of TBI, time post-injury and exclusion criteria (e.g. prior TBI, psychiatric conditions, substance abuse, residential care and programme compliance). The detailed cost-benefit analysis reported by Abrams et al. [1] suggests that specialist brain injury vocational programmes are cost effective. Total operational costs over 5 years were on average $ 4,377 per person. However, taking into account taxes paid and savings in state benefits, the reported average payback period was just 20 months for individuals who would otherwise most likely face a lifetime of unemployment

7 A. Tyerman / Vocational rehabilitation after traumatic brain injury: Models and services 57 and financial dependency. However few of the programmes have been evaluated in controlled studies. In a rare comparative study Malec and Degiorgio [40] reported vocational outcomes for 114 people with ABI (64% with TBI) accepted at a median of 12.7 months post-injury on one of three rehabilitation pathways, determined clinically: specialist vocational service (SVS) only, SVS plus a three hour per week community reintegration outpatient group (CROG), and SVS plus a 6 hour per day comprehensive day treatment (CDT) programme. At one year follow-up community-based employment (CBE) outcomes did not differ across groups: SVS 77%, CROG 85% and CDT 84%.(Rates for return to previous employer were as follows: SVS 50%, CROG 32%, and CDT 32%). It was concluded that different rehabilitation pathways can result in RTW after ABI if the intensity of the service is matched appropriately to the severity of the disability, time since injury and other participant characteristics [40]. Kendall et al. [33] report a quantitative synthesis of 26 outcome studies involving 3688 adults with TBI. Aggregated results indicated that VR programmes produced higher and quicker RTW than in non-intervention follow-up studies. In order to increase the proportion of people with TBI in competitive employment, earlier and intensive emphasis on preparation for full-time employment was recommended. Fadyl and McPherson [19] report a systematic review of the evidence for three broad models of VR after TBI: program-based, supported employment and case coordination. Disappointingly few studies met the inclusion criteria and, of these, very few were judged to be of high quality and none compared different VR approaches. It was concluded that there is currently little clear evidence to suggest what constitutes best practice in VR after TBI. 4. Discussion From the review of outcome studies it seems reasonable to conclude that up to around 40% of people with moderate to severe TBI will RTW and that specialist VR provision using a variety of models increases RTW to some degree. However, the number of studies excluded from systematic reviews is of major concern with conclusions drawn from surprisingly few studies. As highlightedby numerousauthors, definitive figures continue to be constrained by methodological factors. Kendall et al. [33] suggested that the enormous variability in reported RTW (20 90%) reflects methodological inconsistency, the heterogeneous nature of rehabilitation, the prevalence of methodological problems, lack of a standardized definition of outcome variables and measurement insensitivity regarding RTW outcomes. Variable definition of RTW is highlighted as a particular issue. Some studies report only full-time competitive employment; others include other paid employment (e.g. part-time or supported) or vocational training. Some studies also include sheltered, therapeutic or voluntary work and/or adult education. As noted by Shames et al. [61], even when looking at paid employment, there is a need to specify whether this is previous or alterative work, with or without modifications, full-time or part-time, at an equivalent or reduced level, with or without additional training and at a competitive level or not. Both in advancing our understanding of RTW after TBI and in evaluating effectiveness of VR programmes there is a need for consensus about a minimum dataset to allow for meaningful comparison across studies. It is suggested that this might need to include: details of general background (e.g. sex, age at onset, education background). occupation at injury (e.g. status, occupational group, hours, time in post). TBI specific factors (nature, severity, neurosurgical interventions, hospital stay). rehabilitation received (in-patient, out-patient, community and vocational). status on referral (e.g. time since injury, occupational status, role, hours). vocational rehabilitation input (e.g. nature of input, frequency and time period). post-return/placement support (e.g. nature of input, frequency and time period). vocational outcomes at placement and follow-up (e.g.1,2,5and10years). Even with improved data collection definitive predictors of RTW may prove elusive, as least with respect to predicting previous work, due to the potential mismatch between existing job requirements and work performance/behaviour post-tbi. Two people with similar personal backgrounds and comparable effects of TBI will have differential capacity for RTW depending on the specific requirements of their respective jobs. Equally, people with the same job will be differentially constrained by the effects of contrasting disability after TBI. As such, whilst we might reasonably expect to be able to guide both the emphasis and components of VR service developmentsin the future, individual RTW prospects and VR needs are likely to remain a matter

8 58 A. Tyerman / Vocational rehabilitation after traumatic brain injury: Models and services of individual judgment, taking into consideration all relevant factors. It is now over 20 years since Conder [11] commented on the plethora of VR models and the need for a mechanism to decide which type of intervention is most appropriate for each individual. We remain some way off achieving this. Evaluation of outcome has an additional complication in that VR programmes are likely to be increasing baseline RTW figures to some extent. There is the further complication of variation in the base employment rate both nationally and internationally and also over time in response to fluctuating economic conditions. As such, we need more controlled studies, comparing models of specialist VR with core brain injury rehabilitation, generic vocational provision (e.g. government funded provision) and also with other specialist VR models. RTW is quite reasonably a key goal for rehabilitation services. However, we need to be wary of regarding RTW as a universal outcome measure as not all people view RTW as a primary goal. In particular, we need to be alert to the risks of a premature RTW without adequate support, which can have negative effects both vocationally and psychologically. Levack et al. [38] note that RTW can lead to catastrophic consequences for some individuals in terms of stress, psychological wellbeing and quality of life. The need to consider how the job contributes to feelings of meaningful productivity and to a positive sense of identity and self-worth is stressed, as is the need for subjective measures of RTW (such as work satisfaction). For those unable to RTW then a supported return to alternative occupation (such voluntary work) may be a key goal. This may be as important to the quality of life for a particular person and family, as RTW is for others. In evaluating VR we also need to be explicit about the input provided. In reviewing the models there was often uncertainty about the nature and particularly the extent of the input. It is clear that reviews have interpreted some individual programmes differently. Whilst this may reflect in part different perspectives, particularly working in different national systems of care, it also reflects the need for more detailed information on process. In a recent UK study of supported RTW after TBI a content analysis of occupational therapy interventions was developed [52] a similar approach to other VR interventions would inform programme comparison but would also be of value in costing programmes. In order to inform funding decisions we need to be able to demonstrate cost-effectiveness as well as clinical effectiveness, as demonstrated by Abrams et al. [1]. However programme costs are not routinely reported. In an investigation of 5 US TBI Model Systems programmes providing post-placement interventions, Hart et al. [24] found that support in the 6 months after placement varied markedly in both intensity and location: mean hours of input varied from 4 to 88 hours across centres and mean proportion of treatment delivered in the workplace ranged from less than 1% to over 50%. It was noted however that the programmes providing less intensive treatment also tended to be supporting less impaired clients early post-injury, mostly in a return to previous jobs. It was concluded that the less intensive, clinic-based treatment may be sufficient for clients with milder injuries and existing jobs, whereas more intensive programmes may have evolved to meet the long-term needs of clients with more severe injuries. Comparable RTW rates across rehabilitation pathways similarly led Malec and Degiorgio [40] to conclude that people with less disability seen early post- ABI may require less intensive input than those with more extensive long-term disability. Our experience of running a specialist VR programme is that different interventions are required for different vocational needs. In its R&D phase this programme was set up for people unable to return to previous occupation. As the programme has evolved to assist people with complex return to previous employment needs and long-term job retention needs, so we have added a specialist job retention component, running in parallel with the original work preparation/placement programme. However the expectation remains that relatively straight-forward RTW will be supported by our core community ABI rehabilitation team, with referral to the specialist VR programme reserved primarily for more complex vocational needs. Such service-based observations require further evaluation. In the meantime there remains a high level of unmet vocational need in the community. In a large telephone survey one year after injury the fourth and sixth most commonly reported unmet needs were vocational in nature improving your job skills (11.2%) and finding work (9.3%). However when an outstanding need existed the vocational needs were the ones least likely to be met: finding paid employment (95.9%) and improving job skills (83.6%) [13]. In a survey of employment concerns at an average of 7 years post-injury, respondents expressed dissatisfaction with the availability and quality of work preparation, placement and post-employment services, particularly inadequate access to placement assistance by a professional knowledgeable about TBI [56]. So how can we develop services to address these needs?

9 A. Tyerman / Vocational rehabilitation after traumatic brain injury: Models and services Brain injury vocational service provision in the UK Developing specialist VR services to address unmet vocational need in the UK has proved challenging. Of 36 vocational services identified in the UK survey of VR after ABI [17], some were specialist ABI VR programmes, some ABI services with added vocational element and some generic vocational, educational or training programmes that see people with ABI. Not surprisingly the specialist VR programmes in the National Health Service (NHS) tend to use an ABI model with an integrated or added VR component, whereas those in the independent sector tend to use adapted supported employment models. (In the UK a case coordination approach is commonly used by independent case managers funded through compensation claims. Headway, the brain injury association, is likely to favour a consumer-directed approach.) As only 5 of the 36 services identified in the above survey were within the NHS, we have depended in large part on services funded by Jobcentre Plus, an executive agency of the Department for Work and Pensions (DWP). In a key development specialist ABI VR providers worked with Jobcentre Plus to develop a national DWP framework for contracting for brain injury work preparation, geared to the needs of people with ABI. Drawing on models of VR after TBI and their core components, inter-agency guidelines were also developed on vocational assessment and rehabilitation for people with ABI [8]. A specific Quality Requirement on Vocational Rehabilitation was also included in a National Service Framework for Long-term Conditions [16]. This requires access to appropriate vocational assessment, rehabilitation and ongoing support (from local rehabilitation and/or specialist VR services) to enable people with a long-term neurological condition to find, regain or remain in work and access other occupational and educational opportunities. Implementation of the above National Service Framework has been severely constrained by lack of dedicated funding. There has been increased interest within ABI services in supporting people in return to previous work. A preliminary cohort comparison study, evaluating the effectiveness of a guided/supported return to work by an occupational therapist within a specialist TBI team has recently been completed in Nottingham. A higher proportion (75%) of 40 people with TBI of mixed severity returned to work after the specialist Occupational Therapy intervention than in a control group (60%), who received less specialist care [54]. Funding has also recently been made available for a feasibility study for a multi-centre trial of RTW after TBI. In contrast there has been limited opportunity to develop specialist VR provision for those unable to return to previous employment. New Jobcentre Plus funded specialist disability employment provision ( Work Choice ) is now delivered through large regional generic VR providers. Whilst there was the expectation that Work Choice providers would sub-contract with specialist provision, this development signals the end of Jobcentre Plus directly funded specialist ABI provision. Given the move away from specialist provision, joint working across the National Health Service, Jobcentre Plus, local Councils and other statutory, independent and voluntary agencies is essential. This has been incorporated in guidance on VR for people with neurological conditions [7]. Recommendations for implementation include the need for: inter-agency review of local services, development of local inter-agency referral criteria and protocols, establishment of ongoing service links, review by all relevant professional groups of training in VR, an inter-agency approach to training, research to identify new and effective VR and regular audit of current provision against relevant standards and guidelines. In the absence of any funding to develop specialist VR provision ABI services are encouraged to prioritise RTW and extend their services to assist as many people with TBI as possible to return to and maintain previous employment (albeit perhaps in a reduced role). For those unable to return to previous work we strive to retain the existing specialist provision but also advocate pro-active joint working across ABI services, Jobcentre Plus, Social Services and independent/voluntary providers in order to pool expertise and resources to support as many people with TBI as possible into alternative employment or alternatives to employment. In the current financial climate a pragmatic joint approach is likely to be critical in addressing current unmet vocational need after TBI. 6. Conclusions There are a number of models of VR after TBI which differ in their relative emphasis on core ABI rehabilitation, work preparation, works trials and supported placements. There is some evidence of the benefits of specialist TBI VR but there remains a lack of high quality research, particularly controlled studies, to evaluate effectiveness over core brain injury rehabilitation

10 60 A. Tyerman / Vocational rehabilitation after traumatic brain injury: Models and services and/or their added value relative to generic VR provision. There is increasing recognition and some emerging evidence to support the view that different models may be differentially suited to different vocational needs at different stages post-injury. There is a need for consensus over the minimum dataset necessary for comparative evaluation of RTW and the effectiveness of current VR models. There is also a need for more evidence on cost-effectiveness to inform funding decisions. Our clinical experience in the UK is that without such evidence there is a high risk that specialist VR provision will be seen as unnecessary and/or unaffordable (particularly in the current economic climate) and that without such provision people with TBI will continue not to achieve their vocational potential, thereby undermining the quality of their lives. 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