http://informahealthcare.com/bij ISSN: 0269-9052 (print), 1362-301X (electronic) Brain Inj, 2015; 29(1): 25–32 ! 2015 Informa UK Ltd. DOI: 10.3109/02699052.2014.948067

ORIGINAL ARTICLE

Functional outcomes of community-based brain injury rehabilitation clients Christine Curran1, Diana Dorstyn1, Con Polychronis2, & Linley Denson1 1

School of Psychology, Faculty of Health Sciences, University of Adelaide, Adelaide, South Australia, Australia and 2Brain Injury Rehabilitation Community and Home Service, Felixstow, South Australia, Australia Abstract

Keywords

Background: Community-based rehabilitation can help to maximize function following acquired brain injury (ABI); however, data on treatment outcome is limited in quantity. Objective: To describe and evaluate client outcomes of an outpatient programme for adults with moderate-to-severe traumatic and non-traumatic ABI. Methods: Two phase design involving retrospective and longitudinal study of programme completers with ABI (n ¼ 47). Changes in functioning were measured with the Mayo-Portland Inventory (MPAI-4), administered pre- and immediately post-rehabilitation and at 3 years follow-up. Self-ratings were supplemented with MPAI-4 data from significant others (n ¼ 32) and staff (n ¼ 32). Results: Injured individuals and informants reported improved physical and psychosocial functioning immediately following the completion of community rehabilitation, with mediumto-large and significant treatment gains noted on the MPAI-4 ability, adjustment and participation sub-scales (Cohen’s d range ¼ 0.31–1.10). A deterioration in individuals’ adjustment was further reported at follow-up, although this was based on limited data. Issues with longer-term rehabilitation service provision were additionally noted. Conclusions: The data support the need for continuity of care, including ongoing emotional support, to cater to the complex and dynamic needs of the ABI population. However, these results need to be considered in the context of a small sample size and quasi-experimental design.

Brain injury, neurorehabilitation, outcome assessment, rehabilitation

Introduction Historically, adult acquired brain injury (ABI) rehabilitation comprised an acute hospital phase of medical and nursing treatment [1]. Today, rehabilitation has evolved to include a continuum of multi- and inter-disciplinary services that extend from the acute to community-based setting [2]. This focus on continuity of care is particularly important given the ongoing service needs reported by injured individuals within the first year of recovery. This includes issues relating to the accessibility and availability of specialist medical and allied health services, such as cognitive rehabilitation and vocational training [3–5]. Despite the potential value of longer-term and multidisciplinary rehabilitation in helping to maximize physical, cognitive and psychological outcomes following ABI, evidence relating to treatment outcome and efficacy is limited in quantity [6–10]. This is partly due to the complexity of

Correspondence: Diana Dorstyn, School of Psychology, University of Adelaide, North Terrace campus, Adelaide, SA 5000, Australia. Tel: 61 08 8313 0649. Email: [email protected]

History Received 26 February 2014 Revised 20 July 2014 Accepted 21 July 2014 Published online 27 August 2014

conducting research with a heterogeneous population encompassing different neurological conditions (i.e. traumatic and non-traumatic ABI), with distinct trajectories (i.e. natural recovery, stabilization or decline) for progressive and nonprogressive brain damage [6]. This heterogeneity is further complicated by demographic and injury-related variables such as age [11, 12], injury severity [13] and vascular risk factors [14]. The available outcome research has also rendered inconsistent findings. Randomized controlled trials (RCTs) have demonstrated significant and non-significant treatment gains in relation to personal care, mood and enhanced community integration skills following outreach neurorehabilitation for adults with moderate-to-severe traumatic brain injury [15, 16] and severely disabled individuals with diffuse axonal injury or post-stroke [14, 17]. Importantly, these studies incorporated informant ratings to address the social desirability bias commonly associated with self-report measures [18, 19]. However, it is difficult to determine whether treatment gains are maintained once post-acute rehabilitation has ceased, with limited longitudinal data available [20]. There is also an argument that the results highlighted by available RCTs do not accurately capture the complexities of ABI

26

C. Curran et al.

rehabilitation [21, 22]. This includes the development of viable controls, with argument that it is unethical to randomize participants into no treatment or standard care conditions, particularly when no alternatives to specialist interventions exist [20]. The extended length of rehabilitation for an individual with severe ABI can also impede the use of wait-list control groups [20]. This study adds to the evidence base for ABI rehabilitation by reporting the results of a longitudinal trial that describes and evaluates client outcomes associated with a specialised multi- and inter-disciplinary outpatient service. The primary aim was to determine the outcomes of community ABI rehabilitation clients, based on self- and informant-reported changes in individuals’ physical and psychological outcomes over time. A secondary aim was to examine perceived service needs and service satisfaction. It was broadly hypothesized that goal-directed outpatient ABI rehabilitation would contribute to short-term gains in functional ability, in the subacute to chronic stages after ABI; however, longer-term outcomes were unknown.

Methods Client group Consecutive admissions to the Brain Injury Rehabilitation Community and Home Service (BIRCH), based in South Australia, were recruited between 2010-2012. Participants had to meet the following entry eligibility criteria, namely: (1) adult age (i.e.  18 years); (2) with English comprehension (i.e. at least primary school level); and (3) requiring a multi-disciplinary service involving at least three allied health disciplines. ABI was defined as brain damage that occurs after birth due to traumatic (e.g. physical trauma due to motor vehicle accident, assault) or non-traumatic causes (e.g. hypoxia, ischaemia, brain tumour, stroke) [23]. This excluded brain injury due to degenerative diseases such as multiple sclerosis or Parkinson’s disease. Clients also had to have cognitive capacity deemed sufficient to give informed consent (as determined by the treating team) and the physical ability to participate in rehabilitation. Significant others’ group Adult (i.e. aged 18 years) family members (i.e. parents, partners, siblings) and close friends identified (by the individual or family) as the main source of contact for those in the client group were also sourced for the current study. Consent to contact significant others had to be provided by the respective BIRCH client. Staff Informant ratings obtained from the treating team (i.e. allied health staff) employed at BIRCH during the study period were included. Procedure Phase 1 Following approval by the Royal Adelaide Hospital Research Ethics Committee (protocol no. 130314), a retrospective data

Brain Inj, 2015; 29(1): 25–32

analysis was conducted. This involved examining a series of self-report and informant (significant other, staff) questionnaires collected prospectively by the BIRCH team on a client’s admission (Time 1) and discharge (Time 2) from the service during a 2-year time frame (2010–2012). Of 78 participants screened for eligibility, complete (i.e. pre- and post-BIRCH datasets) were available for 47 adults with ABI. Of these, 32 individuals had completed Time 1 and Time 2 ratings from significant others and staff. Phase 2 Following Phase 1, an attempt was made to capture follow-up data (Time 3) and qualitative feedback from recruiting programme graduates. Data collection occurred over a 4-month period (April–July) in 2013. Eligible individuals were invited to participate by a mailed study pack which included a letter of introduction, information sheet, two consent forms, an opt-out form (to be completed by those who chose not to participate) and a series of self-report measures. Three weeks after this initial mail-out, significant others were invited to participate in the follow-up study, provided that the corresponding client did not opt for their exclusion. Significant others received a similar mail pack with an abbreviated survey. As seen in Figure 1, the initial mail out produced a low response rate, with less than 20% of completed questionnaires received. A second mail out to non-responders increased the response rate to 37% for individuals with ABI and significant others. Of 15 clients who consented to a follow-up telephone interview, four were non-contactable (due to the telephone being disconnected or no answer, despite repeated calls), hence interview data was available from 11 clients. The brief interview was conducted by the first author (CC) and took 5–10 minutes. Clients were asked three openended questions regarding the perceived advantages and disadvantages of community-based ABI rehabilitation and suggestions for service improvement, based on their experiences. Brain injury community and home service BIRCH provides a combination of centre-based and home and community services according to a client’s needs and availability. Access to a centre allows the service to provide a more comprehensive physical programme through the use of a gymnasium and hydrotherapy pool as well as an intensive inter-disciplinary rehabilitation programme by being able to organize successive sessions within a day. Therapy also needs to be contextualized by extending to the environments and contexts most relevant to the individual (e.g. in their community, home, workplace). Referrals to the BIRCH service are received from metropolitan acute and sub-acute facilities, country centres and interstate facilities. Selfreferrals from both families and individuals affected by ABI are also accepted. Consistent with the ABI literature, BIRCH services are person-centred with therapy intensity and duration tailored to individual goals and needs [24–26]. A collaborative approach with the client, their everyday supports (i.e. family, friends, carer support staff, work colleagues) is considered important

Community rehabilitation outcomes

DOI: 10.3109/02699052.2014.948067

27

Patients assessed for eligibility (n = 78)

Phase 1

Pre- & post- MPAI 4 assessments conducted Patient group (n = 47) Significant other ratings (n = 32) Staff ratings (n = 32)

Phase 2

Excluded (n = 31) Deceased (n = 2) Unable to give informed consent (n = 4) Incarcerated (n = 1) Incomplete data (n = 24)

First mail out Patient group (n = 47) Significant other group (n = 29; after 3 excluded by patient group)

Questionnaires returned

1.

Patient group (n = 8, plus 5 opt out slips/incomplete questionnaires returned) Significant other group (n = 4, plus 2 opt out slips/incomplete questionnaires returned)

Second mail out to non-responders Patient group (n = 33) Significant other group (n = 23)

Questionnaires returned Patient group (n = 9) Significant other group (n = 7, plus 1 opt out slip returned)

Total analysed Patient group Pre & post-assessment/Time 1–2 (n = 47) Follow-up/Time 3 (n = 17) Significant other group Pre & post-assessments/Time 1–2 (n = 32) Follow-up/Time 3 (n = 11)

Figure 1. Flow chart of study participation.

in achieving meaningful and sustainable change in a person’s everyday living [25]. Given the diverse effects of a brain injury on an individual, a holistic perspective in rehabilitation which considers physical, cognitive, emotional, social and financial aspects of an individual’s situation is also crucial. This approach requires an integrative setting whereby clients, significant others and staff work towards common goals, rather than discipline-specific objectives [24]. The following group and/or individual-based therapies are offered to BIRCH clients, depending on an initial needs-assessment: Clinical Psychology; Medical Rehabilitation; Neuropsychology;

Occupational Therapy; Physiotherapy; Physical Education; Recreational Coordination; Social Work; Speech Pathology and Vocational Coordination. Assessment of function Available socio-demographic and injury information was retrieved from clients’ BIRCH records. This included gender, age, time since ABI and injury cause (i.e. traumatic vs. non traumatic). This data was supplemented with a series of standardized measures.

28

C. Curran et al.

Mayo-Portland Adaptability Inventory–Fourth Revision (MPAI-4) This 35-item self-report scale consists of three sub-scales which measure functional ability, psychosocial adjustment and community participation problems post-ABI [27]. Lower sub-scale scores represent higher functioning. The MPAI can be completed by professional staff, people with ABI and their significant others in order to provide a potentially more representative assessment of post-injury functioning [27]. Psychometric research supports the concurrent validity of the MPAI ( ¼ 0.81) and its reliability when completed by the aforementioned rater groups [28]. BIRCH clients routinely complete an MPAI-4 upon entry and exit of their multidisciplinary rehabilitation programme (Time 1  Time 2), with a staff member being available to answer any questions that may arise during their completion of the inventory. Where possible, a close family member or friend (significant other) and the BIRCH team also complete this questionnaire to obtain varying perspectives, which are often critical for effective rehabilitation planning and for revealing more subtle problem areas [28]. Given the time commitments of significant others and their unavailability in certain circumstances, the MPAI manual is provided to family members of BIRCH clients. For the current study, clients and significant others were asked to complete an additional MPAI-4 at 12–24 months following cessation of their BIRCH programme (Time 3). Although a professional was not present for the follow-up ratings, participants had completed the questionnaire on previous occasions and were encouraged to contact research staff if they had any problems or queries. Depression, Anxiety and Stress Scale-21 (DASS-21) This 21-item scale assesses the severity of current depression, anxiety and stress-related symptoms [29]. Higher scores indicate greater endorsement of psychological distress symptoms, with severity cut-offs available for qualitative comparison [29]. The clinical application of the DASS-21 in samples with ABI is supported, yielding acceptable internal consistency and concurrent validity [30]. For the purpose of this study, the DASS-21 was administered only to the client group at follow-up (Time 3) to provide a general indicator of current mood state. Service Obstacles Scale (SOS)–Satisfaction with Services sub-scale This 4-item sub-scale is designed to assess individuals’ perception of the quality and accessibility of brain injury services [31]. Lower scores indicate improved satisfaction with services. The SOS has demonstrated a strong capacity to capture the perceptions of brain injury services in the community, including good internal consistency and criterion-related validity [31]. The SOS was administered to clients and their significant others at follow-up only (Time 3). Statistical analyses Analyses were performed using SPSS statistics 20.0 (IBMÕ , New York, NY). Demographic data (i.e. age, gender) from participants with ABI were initially compared

Brain Inj, 2015; 29(1): 25–32

(using independent samples t-tests and chi square) to those with incomplete data and/or lost to follow-up in order to determine the extent to which results could be generalized to the larger outpatient population at BIRCH. Treatment outcome was evaluated by conducting a repeated measures 3  2 design ANOVA for each MPAI-4 sub-scale (group: client, significant other, staff  time: pre- and post-MPAI-4 sub-scale scores). Sub-group analyses, using independent samples t-tests, were also conducted to identify differences in MPAI-4 ratings depending on ABI type (i.e. traumatic vs non-traumatic ABI). Cohen’s d effect sizes were additionally calculated to determine the magnitude of change in scores for each group [32]. Cohen’s d is a recommended statistic in neurorehabilitation research, particularly when large samples are not feasible [33]. Effect sizes were calculated using responder analysis, in which only the data for participants who completed questionnaires were included [34]. Effect sizes were interpreted based on the guidelines provided by Cohen [32], with values of 0.2, 0.5 and 0.8 indicating small, medium and large treatment effects, respectively. Effect sizes were standardized so that positive values indicated an improvement with rehabilitation, whereas negative values indicated deterioration. Ninety-five per cent confidence intervals (CIs) were additionally calculated to assess the clinical significance of each effect size [35, 36]. An a priori power calculation indicated that a minimum sample size of 26 was required to detect statistically significant (p50.05) and large (d40.80) treatment effects, with power at 80% (twotailed) [32]. The smaller sample size in Phase 2 limited statistical power. Group differences in MPAI scores at follow-up (i.e. from Time 2 to Time 3) were therefore examined using the non-parametric Mann Whitney U and Wilcoxon Signed Rank tests. Descriptive statistics and Spearman rho correlations for the MPAI-4, DASS-21 and SOS (Time 3 only) highlighted psychosocial issues of concern among those ABI individuals who completed follow-up assessments (n ¼ 17), in addition to the service issues flagged by significant others at this time point (n ¼ 11). These quantitative data were supplemented with feedback obtained from follow-up phone interviews conducted with 11 consenting clients by the first author (CC), who transcribed the interviews. The aim was to provide a basic understanding of the responses to three interview questions: (1) advantages versus (2) disadvantages of the BIRCH service; and (3) suggestions for service improvement, while highlighting potential avenues for more in-depth qualitative research.

Results Sample characteristics Independent t-tests indicated no significant group differences between the mean ages of drop-outs and non-drop-outs among eligible participants (t(71) ¼ 0.29, p ¼ 0.78). The two groups were also comparable in relation to average time since injury, with most having lived with their brain injury for 3 years (t(71) ¼ 0.62, p ¼ 0.54). A chi-square test for independence indicated a similar male:female (3:2) ratio between the two groups (2(1) ¼ 0.24, p ¼ 0.63,  ¼ 0.06).

Community rehabilitation outcomes

DOI: 10.3109/02699052.2014.948067

Pre- and post-MPAI-4 assessments (i.e. Time 1, Time 2) were available from 28 males (59%) and 19 females (40%). On average, these individuals were 41 years of age (SD ¼ 13.1; range ¼ 18–65 years) and between 1 to 8 years post-ABI (X = 3.0, SD = 1.3 years). Traumatic injuries (n ¼ 21, 45%) and brain damage due to cerebrovascular accident (n ¼ 21, 45%) were the most common type of injury, followed by brain tumour (n ¼ 3, 6%) and encephalitis (n ¼ 2, 4%). Additional socio-demographic details were available for 29 participants, the majority of whom were married or in a relationship (n ¼ 18, 62%), whilst 79% (n ¼ 23) were living with another family member. A significant minority had been diagnosed with an affective (n ¼ 5, 17%) or substance abuse disorder (n ¼ 2, 7%; based on Diagnostic and Statistical Manual of Mental Disorders 4th edition, DSM-IV). Client outcomes of community rehabilitation Pre–post BIRCH MPAI-4 scores decreased during the course of rehabilitation (see Tables I and II), with clients, significant others

29

and staff reporting significant (p50.001) improvements in functional ability (F(1, 102) ¼ 21.41), emotional adjustment (F(1, 99) ¼ 25.84) and community participation levels (F(1, 86) ¼ 58.13) over time. The medium-to-large treatment gains are further highlighted by the effect sizes associated with the MPAI-4 sub-scales (see Table II). Participation was additionally associated with a significant interaction effect (F(2, 86) ¼ 3.25, p ¼ 0.043)—with staff reporting greater improvement in this area in comparison to clients and significant others. Sub-group analyses revealed differences in perceived MPAI-4 outcomes, pre- to immediately post-rehabilitation, depending on injury cause. Family members of individuals with a traumatic injury reported less improvement in ability; a finding which neared significance (t(30) ¼ 2.06, p ¼ 0.047), whereas clients with traumatic ABI reported poorer adjustment outcomes in comparison to peers with a non-traumatic injury (t(42) ¼ 2.74, p ¼ 0.011). However, these differences were not confirmed by staff, who reported similar (p  0.10) MPAI-4 ratings at Time 2 across the two injury groups.

Table I. Descriptive statistics for the individual outcome measures.

Measure MPAI-4 Ability Adjustment Participation DASS 21 Depression Anxiety Stress SOS Satisfaction

Patient (n ¼ 47, T1–T2) (n ¼ 17, T3) M (SD)

Time point Time Time Time Time Time Time Time Time Time

1 2 3 1 2 3 1 2 3

14.46 11.58 13.87 12.64 9.48 16.57 10.89 7.05 10.17

(7.23) (7.28) (8.07) (9.65) (8.15) (10.03) (6.01) (5.62) (7.23)

Time 3 Time 3 Time 3

11.29 (14.14) 5.25 (9.00) 12.12 (9.96)

Time 3

12.14 (4.88)

Staff (n ¼ 32, T1–T2) M (SD)

Significant other (n ¼ 32, T1–T2) (n ¼ 11, T3) M (SD) 15.05 11.67 10.13 12.64 10.88 17.00 12.24 8.73 9.00

(6.00) (7.56) (6.40) (9.65) (8.77) (12.51) (6.66) (7.50) (8.26)

Scale range

17.53 (6.36) 11.23 (6.90)

0–47

19.06 (8.61) 12.59 (6.94)

0–46

18.22 (6.31) 11.26 (8.16)

0–30

0–21 0–21 0–21 13.67 (7.55)

0–28

T1, Time 1 (baseline/admission assessment), T2, Time 2 (discharge assessment immediately post-BIRCH rehabilitation), T3, Time 3, follow-up assessment; M, Mean; SD, standard deviation; scale range ¼ minimum and maximum scale score, MPAI-4, Mayo Portland Adaptability Inventory– fourth edition; DASS 21, Depression Anxiety Stress Scales–21 item; SOS, Service Obstacles Scale.

Table II. Cohen’s d and associated confidence intervals for MPAI-4 change scores over time. Patient (n ¼ 47, T1–T2) (n ¼ 17, T3)

Significant other (n ¼ 32, T1–T2) (n ¼ 11, T3)

95% CI Measure MPAI-4 Ability Adjustment Participation

Staff (n ¼ 32, T1–T2)

95% CI

95% CI

Time point

d

Lower

Upper

d

Lower

Upper

d

Lower

Upper

T1–T2 T2–T3 T1–T2 T2–T3 T1–T2 T2–T3

0.40* 0.31* 0.33* 0.87* 0.64* 0.56*

0.11 0.60 0.04 1.20 0.33 0.87

0.69 0.02 0.62 0.54 0.95 0.25

0.56* 0.20 0.18 0.70* 0.53* 0.04

0.19 0.15 0.17 1.09 0.16 0.39

0.93 0.55 0.55 0.31 0.90 0.35

0.99*

0.57

1.41

0.75*

0.36

1.14

1.10*

0.69

1.51

T1, Time 1 (baseline/admission assessment); T2, Time 2 (discharge assessment immediately post-BIRCH rehabilitation); T3, Time 3, follow-up assessment; CI, 95% confidence interval for mean effect size d; MPAI-4, Mayo Portland Adaptability Inventory–fourth edition. *Significant treatment effect: 95% CI does not span zero.

30

C. Curran et al.

Follow-up The follow-up client sample (n ¼ 17) had a gender distribution of seven males and 10 females and included traumatic (n ¼ 9) and non-traumatic (n ¼ 8) injuries. Time since injury varied, with individuals being assessed at an average of 3 years post-ABI (SD ¼ 0.93, range ¼ 1.8–4.8 years). Fortyseven per cent (n ¼ 8) were married or in a supportive relationship, whilst 53% (n ¼ 9) were living with their immediate family (e.g. spouse, parents, siblings, children) at the time of assessment. Thirty-five per cent (n ¼ 6) also experienced mental health complications with a diagnosed (DSM-IV) affective disorder. As seen in Table I, clients endorsed mild symptoms of depression at follow-up, according to DASS severity ratings [29]. The standard deviations also reveal large within-group variation. This included five participants who reported moderate (n ¼ 2, 12%) to extremely severe symptoms of depression (n ¼ 3, 18%), in combination with severe anxiety and/or stress. Wilcoxon Signed Rank Tests revealed a statistically significant deterioration in clients’ perceived ability (z ¼ 2.35, p ¼ 0.019), although the magnitude of this change was small (d50.40, see Table II). Both clients and their significant others also noted a deterioration in adjustment scores over the longer term, as demonstrated by the large and negative effect sizes (d  0.70). In addition, clients reported a significant reduction in their level of community participation at follow-up (d ¼ 0.55), although significant others reported minimal change in this area in comparison to their Time 2 ratings (d50.05). MPAI-4 ratings significantly correlated with the DASS-21, with individuals who endorsed higher depression, anxiety and/or stress symptoms also reporting poor functional ability (depression  ¼ 0.61, p ¼ 0.015; stress  ¼ 0.69, p ¼ 0.004) and emotional adjustment (depression  ¼ 0.89, p ¼ 0.000; anxiety  ¼ 0.72, p ¼ 0.005; stress  ¼ 0.75, p ¼ 0.002). In relation to satisfaction with ABI resources, both clients and their significant others reported general satisfaction with the quality and accessibility of local community support services (see Table I). However, service satisfaction (SOS) correlated with DASS-21 ratings: clients with higher levels of distress reported greater dissatisfaction with available resources (stress  ¼ 0.63, p ¼ 0.015). Service satisfaction was also dependent on time since injury: those in the chronic stages of ABI reported increased dissatisfaction ( ¼ 0.58, p ¼ 0.029), along with their significant others ( ¼ 0.72, p ¼ 0.030). There were no significant group differences for the SOS (U ¼ 55.00, z ¼  0.51, p ¼ 0.613), suggesting comparability of client and significant other ratings on this measure. Client feedback The 11 telephone interviews provided important adjunct information in relation to individuals’ rehabilitation experiences. Given the small and select sample, however, this preliminary data cannot be generalized to the broader BIRCH population. Comments relating to the positive aspects of the BIRCH programme primarily focused on staff characteristics,

Brain Inj, 2015; 29(1): 25–32

with the team being described as ‘brilliant’, ‘friendly’, ‘helpful’ and ‘professional’. Clients also noted the importance of service accessibility and availability, including tailoring treatment to meet individual needs; the convenience of home visits; and the use of physiotherapy and gym equipment. Negative aspects of service delivery were identified by four clients and revolved around difficulties inherent in time-lined goals. These difficulties included: travel time for clients located in rural and remote locations; change of staff and the consequent disruption to an individual’s programme; need for extended input in relation to complex lifestyle goals such as return to work; and community transition issues, with loss of emotional and social support upon completion of the BIRCH programme. Suggested service improvements revealed a need for ongoing monitoring and peer support, increased staffing and equipment resources to improve client intake, and increased awareness of BIRCH services from acute and community-based healthcare professionals to ensure timely referral—with one individual noting that they ‘stumbled upon BIRCH information on the internet’.

Discussion This study aimed to examine the physical and psychosocial outcomes of community-based ABI rehabilitation clients, in addition to their perceived service needs. Retrospective and prospective analyses revealed that outpatient rehabilitation was associated with immediate and significant gains across physical and psychosocial domains. A decline in emotional functioning, in the longer-term, was also reported, although the findings need to be considered in the context of a small sample size. Service satisfaction was additionally noted, with community supports rated as accessible and available, although the importance of continued rehabilitation services beyond the duration of the formal post-acute programme was emphasized. These data are generally consistent with the available effectiveness research in ABI rehabilitation, which highlights the debilitating nature of brain injury and the need for lifetime service provision [2, 4, 5, 7]. The data also potentially challenges previous research, which suggests that functional changes are maintained up to 2 years following the cessation of rehabilitation [15]. The sample characteristics may, in part, explain this discrepancy. In particular, this study reviewed individuals who had acquired a brain injury through either traumatic or non-traumatic means—whereas much of the brain injury rehabilitation literature has focused on the former [6, 15]. There is evidence that injury type impacts on treatment requirements and long-term outcomes, with traumatic and non-traumatic injuries varying in psychological sequalae [27, 28]. The current sample also included individuals with psychiatric co-morbidities, which may confound symptoms of ABI [30], but also impact on recovery [33]. Moreover, there is a possibility that the depressed clients in this sample demonstrated a negative judgement bias in selfreport ratings of their ability. Longitudinal trials across both traumatic and non-traumatic ABI groups which supplement self-report with clinician-based interviews would allow for a better understanding of psychosocial recovery trajectories over time.

Community rehabilitation outcomes

DOI: 10.3109/02699052.2014.948067

That clients and significant others reported lower service satisfaction ratings over time highlights the complexity of ABI and continuity of care. Timely rehabilitation services, with active involvement of significant others throughout the rehabilitation process, can help to maximize client outcomes as well as provide a level of care and support for primary caregivers [37], including opportunity to address concerns relating to the emotional and physical burden that comes with managing ABI [38]. Given that recovery from ABI will continue for many years post-injury, this support is needed on an ongoing basis with services modified to meet an individual’s changing needs over time [9]. This continuity of care model was supported by client feedback in this study, with suggestion that psycho-education may help to increase public awareness of the BIRCH service. Further insight into individuals’ personal experiences of ABI rehabilitation, including systemic and personal barriers that impact on outcomes, may additionally be gained through well-developed qualitative research. This might include email-facilitated interviews, which have demonstrated clinical feasibility among individuals with cognitive impairment, [39] and analytic methodologies such as grounded theory [40] or interpretive phenomenological analysis [41]. A related service need is cross-disciplinary training so that allied health professionals can work closely with other disciplines (i.e. general practitioners) in order to provide the right skill set to achieve effective interventions for the ABI group [42]. With post-acute rehabilitation services, particularly within Australia, being in short supply [43], the feasibility and accuracy of performing multi-disciplinary ABI rehabilitation assessment and intervention via cost-effective and accessible means, including the use of telerehabilitation to support long distance health care, may be an avenue for future research [44]. Although interesting, these findings need to be considered in the context of the study’s methodological limitations. A notable shortcoming was the large attrition rate, which resulted in a small sample size at follow-up. The attrition rates were also higher than the recommended maximum of 40% [20], restricting the use of data imputation techniques [45]. In recognition of the restricted sample size, Cohen’s d values were utilized to quantitatively evaluate treatment outcome [32, 33]. However, statistically significant small treatment effects, which can be important clinically, would have been difficult to detect [32]. Sample attrition is a potential problem associated with practice-based research where the onus is on consumers to respond [46]. Loss to follow-up can also bias outcome [33]. In this instance, baseline MPAI-4 ratings indicated that the target sample involved individuals with moderate-to-severe ABI. Consequently, those with greater functional disability may have been unable to respond to the mailed survey, whilst others may have been reluctant to ask relatives for assistance, due to privacy reasons. In addition, the sample was recruited from a single community setting, which may limit the extent to which the findings can be generalized to the ABI population at large. Future practice research might enhance sample retention and generalizability through the use of different sources, including online media in participant recruitment. Another limitation relates to the uncontrolled study design, thereby preventing examination of the efficacy of

31

rehabilitation [46]. The use of a community control or a comparison group of adults from the general population might be considered in future research [33]. Given the small sample size, treatment efficacy could also be evaluated by using a methodological design that focused on individual change in participants over time. One example of this is the multi-phase design which commonly involves assessment at baseline, followed by a treatment phase, withdrawal of treatment (return to baseline) and a second treatment phase [47]. Such designs control for the above-mentioned threat to internal validity because they allow for individual variability in the behaviour being evaluated and, importantly, address small sample sizes [47]. Additionally, the replicability of these experimental designs permits the methodological flexibility that is required for ABI research in clinical settings [46]. Despite these limitations, the results of the current study are promising, with collaborative brain injury rehabilitation helping to determine physical and psychological outcomes in the community setting. Large-scale and longitudinal research is needed to confirm these findings in addition to assessing the maintenance of rehabilitation gains over time. These data would contribute to evidence- and practice-based standards of care for this population, by providing more detail in relation to the minimum requirements needed to achieve effective rehabilitation practice.

Declaration of interest C. Polychronis is a registered Clinical Psychologist employed at the study setting.

References 1. Wade DT. Measurement in neurological rehabilitation. New York: Oxford University Press; 1992. 2. Prvu Bettger JA, Stineman MG. Effectiveness of multidisciplinary rehabilitation services in postacute care: State-of-the-science. A review. Archives of Physical Medicine and Rehabilitation 2008;88:1526–1534. 3. Corrigan J, Whiteneck G, Mellick D. Perceived needs following traumatic brain injury. Journal of Head Trauma Rehabilitation 2004;19:205–216. 4. Heinemann AW, Sokol K, Garvin L, Bode RK. Measuring unmet needs and services among persons with traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2002;83: 1052–1059. 5. Pickelsimer EE, Selassie AW, Sample PL, Heinemann AW, Gu JK, Veldheer LC. Unmet service needs of persons with traumatic brain injury. Journal of Head Trauma Rehabilitation 2007;22:1–13. 6. Lu J, Gary KW, Neimeier JP, Ward J, Lapane KL. Randomized controlled trials in adult traumatic brain injury. Brain Injury 2012; 26:1523–1548. 7. Prvu Bettger JA, Stineman MG. Effectiveness of multidisciplinary rehabilitation services in postacute care: State-of-the-science. A review. Archives of Physical Medicine and Rehabilitation 2007;88:1526–1534. 8. Kim H, Colantonio A. Effectiveness of rehabilitation in enhancing community integration after acute traumatic brain injury: A systematic review. American Journal of Occupational Therapy 2010;64:709–719. 9. Gordon WA, Zafonte R, Cicerone K, Cantor J, Brown M, Lombard L, Goldsmith R, Chandna T. Traumatic brain injury rehabilitation: State of the science. American Journal of Physical Medicine & Rehabilitation 2006;85:343–382. 10. Brasure M, Lamberty GJ, Sayer NA, Nelson NW, Macdonald R, Ouellette J, Wilt TJ. Participation after multidisciplinary rehabilitation for moderate to severe traumatic brain injury in adults: A

32

11. 12. 13. 14. 15.

16.

17. 18.

19.

20.

21. 22.

23. 24. 25. 26. 27.

28.

C. Curran et al. systematic review. Journal of Head Trauma Rehabilitation 2013;22: 26–30. McIntyre A, Mehta S, Aubut J, Dijkers M, Teasell RW. Mortality among older adults after a traumatic brain injury: A meta-analysis. Brain Injury 2013;27:31–40. McIntyre A, Mehta S, Janzen S, Aubut J, Teasell RW. A metaanalysis of functional outcome among older adults with traumatic brain injury. NeuroRehabilitation 2013;32:409–414. Stevens RD, Sutter R. Prognosis in severe brain injury. Critical Care Medicine 2013;41:1104–1123. Cumming TB, Marshall RS, Lazar RM. Stroke, cognitive deficits, and rehabilitation: Still an incomplete picture. International Journal of Stroke 2013;8:38–45. Powell J, Heslin J, Greenwood R. Community based rehabilitation after severe traumatic brain injury: A randomised controlled trial. Journal of Neurology, Neurosurgery & Psychiatry 2002;72: 193–202. Cicerone KD, Mott T, Azulay J, Sharlow-Galella MA, Ellmo WJ, Paradise S, Friel JC. A randomized controlled trial of holistic neuropsychologic rehabilitation after traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2008;89: 2239–2249. Bender A, Bauch S, Grill E. Efficacy of a post-acute interval inclient neurorehabilitation programme for severe brain injury. Brain Injury 2014;28:44–50. Wilde EA, Whiteneck GG, Bogner J, Bushnik T, Cifu DX, Dikmen S, et al. Recommendations for the use of outcome measures in traumatic brain injury research. Archives of Physical Medicine and Rehabilitation 2010;9:1650–1660. Leininger S1, Strong CA, Donders J. (2014). Predictors of outcome after treatment of mild traumatic brain injury: A pilot study. J Head Trauma Rehabil 29(2):109–116. doi: 10.1097/ HTR.0b013e3182860506. Turner-Stokes L, Nair A, Sedki I, Disler PB, Wade DT. Multidisciplinary rehabilitation for acquired brain injury in adults of working age. Cochrane Database of Systematic Reviews (Internet) 2005;3:CD004170. Available online at: http://www.bibliotecacochrane.com/pdf/CD004170.pdf, accessed 20 July 2014. Malec JF. Ethical and evidence-based practice in brain injury rehabilitation. Neuropsychological Rehabilitation 2009;19: 790–806. Kersten P, Ellis-Hill C, McPherson K, Harrington R. Beyond the RCT - understanding the relationship between interventions, individuals and outcome - the example of neurological rehabilitation. Disability and Rehabilitation 2010;32:1028–1034. Victorian Disability Act 2006, Act No 23, Part 1(S3) Definitions. Available from: http://www.austlii.edu.au/cgi-bin/sinodisp/au/legis/ vic/consol_act/da2006121/s3.html Accessed 20 July 2014. Kuipers P, Carlson G, Bailey S, Sharma A. A preliminary exploration of goal setting in community-based rehabilitation for people with brain impairment. Brain Impairment 2004;5:30–41. Ylvisaker M, Feeney TJ. Collaborative brain injury intervention: Positive everyday routines. San Diego, CA: Singular Publishing Group; 1998. Ylvisaker M, Jacobs H, Feeney T. Positive supports for people who experience behavioural and cognitive disability after brain injury: A review. Journal of Head Trauma Rehabilitation 2003;18:7–32. Malec JF, Moessner AM, Kragness M, Lezak MD. Refining a measure of brain injury sequelae to predict post-acute rehabilitation outcome: Rating scale analysis of the Mayo-Portland Adaptability Inventory. Journal of Head Trauma Rehabilitation 2000;15: 670–682. Malec JF, Thompson JM. Relationship of the Mayo-Portland Adapatability Inventory to functional outcome and cognitive

Brain Inj, 2015; 29(1): 25–32

29. 30.

31. 32. 33.

34. 35.

36.

37. 38.

39. 40. 41.

42. 43. 44.

45. 46.

47.

performance measures. Journal of Head Trauma Rehabilitation 1994;9:1–15. Lovibond SH, Lovibond PF. Manual for the Depression Anxiety Stress Scales. Sydney: Psychology Foundation; 1995. Dahm J, Wong D, Ponsford J. Validity of the Depression Anxiety Stress Scales in assessing depression and anxiety following traumatic brain injury. Journal of Affective Disorders 2013;151: 392–396. Kolakowsy-Hayner SA, Kreutzer JS, Miner KD. Validation of the Service Obstacles Scale for the traumatic brain injury population. NeuroRehabilitation 2000;14:151–158. Cohen J. A power primer. Psychological Bulletin 1992;112: 155–159. Carroll LJ, Cassidy D, Holm L, Kraus J, Coronado VG. Methodological issues and research recommendations for mild traumatic brain injury: The WHO collaborating centre task force on mild traumatic brain injury. Journal of Rehabilitation Medicine 2004;(Suppl 43):113–125. Snapinn SM, Jiang Q. Responder analyses and the assessments of a clinically relevant treatment effect. Trials 2007;8:1–6. Viechtbauer W. Approximate confidence intervals for standardized effect sizes in the two-independent and two-dependent samples design. Journal of Educational and Behavioral Statistics 2007;32: 39–60. Ferrin JM, Bishop MM, Tansey TN, Frain M, Swett EA, Lane FJ. Conceptual and practical implications for rehabilitation research: Effect size estimates, confidence intervals and power. Rehabilitation Education 2007;21:87–100. Leith K, Phillips L, Sample P. Exploring the service needs and experiences of persons with TBI and their families: The South Carolina experience. Brain Injury 2004;18:1191–1208. Kreutzer JS, Stejskal TM, Ketchum JM, Marwitz HF, Taylor LA, Menxel J. A preliminary investigation of the brain injury family intervention: Impact on family members. Brain Injury 2009;23: 535–547. Egan J1, Chenoweth L, McAuliffe D. (2006). Email-facilitated qualitative interviews with traumatic brain injury survivors: a new and accessible method. Brain Injury, 20(12):1283–1294. Godwin E, Chappell B, Kreutzer J. Relationships after TBI: A grounded research study. Brain Injury 2014;28:398–413. Hoosen JM, Coetzer R, Stew G, Moore A. Patients’ experience of return to work rehabilitation following traumatic brain injury: A phenomenological study. Neuropsychological Rehabilitation 2013;23:19–44. Ponsford J, Sloan S, Snow P. Traumatic Brain Injury: Rehabilitation for everyday adaptive living. 2nd ed. Hove, UK: Psychology Press; 2012. Winkler D, Farnworth L, Sloan S. People under 60 living in aged care facilities in Victoria. Australian Health Review 2006;30: 100–108. Bergquist TF, Thompson K, Gehl C, Munoz Pineda J. Satisfaction ratings after receiving internet-based cognitive rehabilitation in persons with memory impairments after severe acquired brain injury. Telemedicine Journal and eHealth 2010;16:417–423. Hollis S, Campbell F. What is meant by intention to treat analysis? Survey of published randomised controlled trials. British Medical Journal 1999;319:670–674. Maas AIR, Menon DK, Lingsma HF, Pineda JA, Sandel ME, Manley GT. Re-orientation of clinical research in traumatic brain injury: Report of an International Workshop on Comparative Effectiveness Research. Journal of Neurotrauma 2012;29:32–46. Perdices M, Tate RL. Single-subject designs as a tool for evidencebased clinical practice: Are they unrecognised and undervalued? Neuropsychological Rehabilitation 2009;19:904–927.

Copyright of Brain Injury is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.