The Australian and New Zealand brain injury lifespan cohort protocol: Leveraging common data elements to characterise longitudinal outcome and recovery.

INTRODUCTION: Cognitive, behavioural, academic, mental health and social impairments are common following paediatric traumatic brain injury (TBI). However, studies are often reliant on small samples of children drawn from narrow age bands, and employ highly variable methodologies, which make it challenging to generalise existing research findings and understand the lifetime history of TBI. METHOD AND ANALYSIS: This study will synthesise common data sets from national (Victoria, New South Wales, Queensland) and international (New Zealand) collaborators, such that common data elements from multiple cohorts recruited from these four sites will be extracted and harmonised. Participant-level harmonised data will then be pooled to create a single integrated data set of participants including common cognitive, social, academic and mental health outcome variables. The large sample size (n=1816), consisting of participants with mild, moderate and severe TBI, will provide statistical power to answer important questions that cannot be addressed by small, individual cohorts. Complex statistical modelling, such as generalised estimation equation, multilevel and latent growth models, will be conducted. ETHICS AND DISSEMINATION: Ethics approval was granted by the Human Research Ethics Committee (HREC) of the Royal Children's Hospital (RCH), Melbourne (HREC Reference Number 2019.168). The approved study protocol will be used for all study-related procedures. Findings will be translated into clinical practice, inform policy decisions, guide the appropriate allocation of limited healthcare resources and support the implementation of individualised care.

A randomized controlled trial of cognitive behavioural therapy for managing anxiety in adolescents with acquired brain injury.

The aim of this randomized controlled trial was to evaluate an adapted cognitive behavioural therapy (CBT) programme for treating anxiety in adolescents with acquired brain injury (ABI). Participants with ABI (12-19 years, N = 36) recruited from two sites were randomly allocated into either the intervention receiving 11 sessions of CBT (n = 19) or a wait-list control group (n = 17). The primary outcome was participants' anxiety and secondary outcomes were participants' depression, self-perception, and participation in daily activities, and parental stress, measured at (i) pre-intervention, (ii) immediately post-intervention, (iii) 2 months post-intervention and (iv) 6 months post-intervention. Repeated measures ANOVAs revealed significant treatment effects with the intervention group demonstrating greater improvements in self-reported anxiety, as well as self- and parent-reported depression from pre- to immediately post-treatment, compared to wait-list controls. Little evidence of treatment effects was found for the remaining outcomes (parent-reported anxiety, self-perception, daily participation, and parental stress). Significant improvement in self-reported anxiety found immediately post-treatment was maintained at two- and six-month follow-up. Findings provide support for adapted CBT as an effective means of reducing anxious and depressive symptomatology in adolescents with ABI compared to waitlist controls, and offer support for the use of these techniques to manage anxiety in this population..

Trait Mindfulness as a Mediator of Anxiety and Psychosocial Functioning in Young People with Acquired Brain Injury.

Objective: Following acquired brain injury (ABI), young people may experience increased anxiety as well as difficulties with their psychosocial functioning. This study examined trait mindfulness as a mediator of the relationship between anxiety and psychosocial domains of School and Leisure Activities (SLA), Interpersonal Relationships (IR) and Daily Living Skills (DLS).Method: Participants were adolescents with ABI (aged 12-19 years, N = 38). Standardised measures were used to assess anxiety, trait mindfulness, and psychosocial functioning.Results: Higher levels of anxiety were found to be associated with reduced IR (p < .05) and DLS (p < .05). Increased trait mindfulness was found to be associated with lowered anxiety (p < .01), as well as with better IR (p < .05) and DLS (p <.01). Mediation analyses found a significant indirect effect for the relationship between anxiety and DLS through trait mindfulness.Conclusion: Findings highlight the contribution of trait mindfulness as a mediator between anxiety and psychosocial functioning, such that increased mindfulness and lower levels of anxiety are related to better DLS.

Assessing psychosocial functioning following childhood acquired brain injury: The Sydney Psychosocial Reintegration Scale for Children.

OBJECTIVE: The Sydney Psychosocial Reintegration Scale for Children (SPRS-C) assesses psychosocial functioning in children with acquired brain injury (ABI). This article aims to: (1) describe normative data for the parent-rated SPRS-C and, (2) evaluate the discriminant validity of the SPRS-C. METHODS: For Aim 1, participants were parents of typically developing children (TDC) aged 5-14 years (N = 200). For Aim 2, participants with ABI were aged 5-14 years (n = 26). A matched group of TDC was sampled from the larger normative sample to serve as a control group (n = 26). RESULTS: For Aim 1, SPRS-C scores across the 10 age-bands were in the higher ranges. Correlation coefficients of SPRS-C total score with child's age and parent occupational skill level were not statistically significant. For Aim 2, SPRS-C scores for the ABI group were significantly lower than the control group. CONCLUSIONS: These data provide a guide for clinical interpretation of the SPRS-C for measuring psychosocial functioning in children with ABI.

Evaluation of an attention and memory intervention post-childhood acquired brain injury: Preliminary efficacy, immediate and 6 months post-intervention.

OBJECTIVE: Impairments in attention and memory are common sequelae following paediatric acquired brain injury (ABI). While it has been established that such impairments are long-term and, therefore, affect quality-of-life, there is a scarcity of evidence-based interventions to treat these difficulties. The current study aimed to pilot the efficacy of the Amsterdam Memory and Attention Training for Children (Amat-c: English version) using both neuropsychological and ecologically sensitive measures. It was expected that children with attention and memory difficulties post-ABI would show improved performance post-intervention on cognitive and ecological measures, with maintenance at 6 months post-intervention. METHODS AND PROCEDURES: Ten children with an ABI, between the ages of 8-13 years at the time of recruitment were identified through audits of presentations to a metropolitan paediatric hospital. Each child underwent screening, the 18 week intervention programme, pre-intervention, immediate and 6 month post-intervention assessments. OUTCOMES/RESULTS: Findings supported the hypothesis that children would show post-intervention (immediate and 6 month) improvement in areas of attention and memory, with generalization to everyday life. CONCLUSIONS/IMPLICATIONS: Preliminary results provide support for the efficacy of the Amat-c post-childhood ABI. A larger study is needed to confirm these findings, as a reduction in attention and memory difficulties will enhance everyday functioning.

Does what we measure matter? Quality-of-life defined by adolescents with brain injury.

OBJECTIVES: To determine if domains included in popular measurement systems (e.g. the Peds QL™) reflect the adolescent survivor of a brain injury's sense of QoL and explore this relationship in reference to an emerging model of wellbeing in the adolescent with TBI. METHODS: Mixed methods; adolescent QoL assessed using the PedsQL™ self-report and a semi-structured interview created by the lead author. Adolescent self-report was compared to adolescent narratives. RESULTS: Ten adolescents participated. Adolescent PedsQL™ total was within normal limits. Adolescents reported that changes identified by the PedsQL were not important and did not impact on their sense of QoL. The importance on social components of QoL-as opposed to cognitive-provide additional support of the emerging model of wellbeing in adolescents with TBI. CONCLUSIONS: The PedsQL can identify changes post-TBI, but fails to consider whether these changes are relevant to the adolescent. Alternate methods of exploring QoL-which emphasize the interaction of social networks and friendships, should be considered to avoid an oblique view of QoL outcomes after TBI.

"In my before life": relationships, coping and post-traumatic growth in adolescent survivors of a traumatic brain injury.

OBJECTIVE: Explore the individual, adolescent phenomeno-logy of quality of life after traumatic brain injury. SUBJECTS/PATIENTS: Adolescent survivors of traumatic brain injury. METHODS: Qualitative interviews with 10 adolescents, mean age at assessment 17.09 years (SD 1.81). Mean time since injury 4.62 years (SD 2.89). Data were analysed using a primarily interpretative phenomenological analysis approach. RESULTS: Two major findings: (1) perceived quality of life was not automatically impacted by a traumatic brain injury, but when it was, the directionality of impact (positive, negative) varied depending on the life-domain; (2) changes in ability post-traumatic brain injury were attributed to the injury (more often cognitive and physical changes) or to a sense of normal maturation processes (72% and 28%, respectively). Attribution processing permeated themes of personal and social discrepancies, which also yielded themes of: altered family and relationships, roles, responsibilities, independence, coping and post-traumatic growth. All participants reported a happy life at the time of interview. CONCLUSION: The adolescents' appraisal of their identity from pre- to post-injury life was related to their current sense of well-being. Most notably was the sense of balance; participants addressed the negative and positive consequences of brain injury to qualify their sense of wellbeing.

Depression and health related quality of life in adolescent survivors of a traumatic brain injury: a pilot study.

UNLABELLED: Traumatic brain injury is (TBI) a leading cause of morbidity and mortality in youth. Adult survivors of a severe pediatric TBI are vulnerable to global impairments, including greater employment difficulties, poor quality of life (HRQoL) and increased risk of mental health problems. When estimating the health related quality of life in adolescents, the presence of anxiety and depression and the quality of social relationships are important considerations, because adolescents are entrenched in social development during this phase of maturation. The influence of anxiety, depression and loneliness on health related quality of life in adolescent survivors of TBI has not been documented. This pilot study aimed to identify and measure the relationship between anxiety, depression and loneliness and perceived health related quality of life in adolescent survivors of a TBI. METHOD: mixed method/cohort pilot study (11 adolescents, mild to severe TBI; 9 parents), using self-report and proxy-report measures of anxiety, depression, health related quality of life, loneliness and clinical psychiatric interviews (adolescent only). RESULTS: Self-reported depression was significantly correlated with self-reported HRQoL (rs [11] = -0.88, p<0.001). Age at injury was significantly correlated with self-reported HRQoL (rs [11] = -0.68, p = 0.02). Self-reported depression predicted self-reported HRQoL (R2 = 0.79, F [1, 10] = 33.48, p<0.001), but age at injury did not (R2 = 0.19, F [1, 10] = 2.09, p = 0.18). CONCLUSIONS: Our results suggest that depression is a predictor of health related quality of life in youth post-TBI. The possibility of using targeted assessment and therapy for depression post-TBI to improve health related quality of life should be explored.

Psychosocial adjustment following acquired brain injury in childhood and adolescence: executive, behavioural and emotional contributions.

BACKGROUND: A large literature documents psychosocial difficulties affecting participation in everyday activities following acquired brain injury (ABI). This study examined executive, behavioural and emotional contributions to psychosocial outcome in children with ABI. METHOD: Participants with ABI (n = 35; aged 7-18 years) were recruited from a rehabilitation department. Psychosocial functioning was assessed using the Sydney Psychosocial Reintegration Scale for Children (SPRS-C). Executive, emotional and behavioural variables were examined using self and parent-report measures. RESULTS: Thirty-eight per cent of the sample was classified as having good psychosocial functioning, with 54% classified as limited and 8% as poor. The sample was dichotomized on executive, behavioural and emotional functioning comparing those with and without difficulties. Participants classified without behavioural difficulties had better functioning on SPRS-C compared to those with difficulties (p < 0.01). In contrast, for executive and emotional functioning, hardly any SPRS-C variable showed significant group differences. Of the total group, 15-21% had elevated levels on emotional outcome measures. This was, however, dependent on age, with 22-44% of the older sample reporting elevated levels on at least one emotional variable compared to 4-16% of the younger sample. DISCUSSION: The pattern of results highlight the contribution of behavioural functioning to psychosocial outcome post-childhood ABI.

Preliminary efficacy of an attention and memory intervention post-childhood brain injury.

OBJECTIVE: Impairments in attention and memory are common consequences following paediatric acquired brain injury (ABI). Despite this, there is a scarcity of evidence-based interventions for these difficulties. The current study aimed to pilot the feasibility and efficacy of the English version of the Amsterdam Memory and Attention Test for Children (Amat-c) and to identify ecologically valid measures sensitive to post-evaluation improvements. It was expected that children with attention and memory difficulties post-TBI would show improved performance post-intervention on traditional cognitive measures and on measures of everyday performance. METHODS AND PROCEDURES: Three children (case study design) with an acquired brain injury (near drowning, birth delivery complications, fall from a horse) and currently between the ages of 8-13 were identified through audits of presentations to a metropolitan paediatric hospital. Each child underwent screening, pre-intervention and post-intervention assessments (immediate and 6 months). OUTCOMES/RESULTS: Results indicated improved performance in the areas of attention and memory from pre- to post-intervention, with gains maintained at 6 months post-intervention. CONCLUSIONS AND IMPLICATIONS: Findings demonstrate initial support for efficacy of the Amat-c and its use with survivors of child ABI to alleviate common cognitive and functional consequences. A larger study is needed to further confirm these findings.

Ecological assessment of cognitive functions in children with acquired brain injury: a systematic review.

BACKGROUND: Childhood acquired brain injury (ABI) often leads to impairment in cognitive functioning, resulting in disabilities in both the home and school environment. Assessing the impact of these cognitive deficits in everyday life using traditional neuropsychological tests has been challenging. This study systematically reviewed ecological measures of cognitive abilities available for children with ABI. METHOD: Eight databases were searched (until October 2011) for scales: (1) focused on ecological assessment of cognitive functioning; (2) with published data in an ABI population; (3) applicable to children up to 17;11 years of age; and (4) in English. The title and abstract of all papers were reviewed independently by two reviewers. RESULTS: Database searches yielded a total of 12 504 references, of which 17 scales met the inclusion criteria for the review, focusing on executive functions (n = 9), memory (n = 3), general cognitive abilities (n = 2), visuo-spatial skills (n = 2) and attention (n = 1). Four tasks used observation of actual performance in a natural environment, five were proxy-reports and six were functional paper and pencil type tasks, performed in an office. CONCLUSION: Overall, few measures were found; eight were still experimental tasks which did not provide norms. Executive functions were better represented in ecological assessment, with relatively more standardized scales available.

Quality of life in children and adolescents post-TBI: a systematic review and meta-analysis.

UNLABELLED: Traumatic brain injury is (TBI) a leading cause of morbidity and mortality in children and adolescents in first-world nations. Research from our team investigating adult survivors of pediatric TBI indicate that survivors of severe TBI are particularly vulnerable to global impairments, including poorer school performance, greater employment difficulties, poor quality of life (QoL), and increased risk of mental health problems. Investigation into less observable consequences, including QoL, has emerged recently as an important outcome to assess in TBI populations. The status of QoL in pediatric TBI populations is mixed, likely a reflection of the varied methodological and theoretical perspectives on QoL. AIM: This systematic study will clarify the nature of QoL in survivors of pediatric TBI, and identify predictors of QoL in this group. Of 419 articles identified, 11 studies met our inclusion criteria, and 9 were ultimately analyzed in this review. Four studies reported good QoL and 5 poor QoL. The difference between good and poor QoL was statistically significant due to TBI severity [chi-square(3)=77.38, p<0.001], timing of outcome assessment [chi-square(1)=565, p<0.001], and definition of QoL [chi-square(3)=34.73, p<0.001]. The odds of having a poor QoL increased 5.8 times (RR=1.21) when injuries were more severe. Good outcomes are contingent on milder injuries, proxy reporting, and early assessment, whereas poor outcomes reflect more severe injuries and later assessment (≤ 6 months versus ≥ 1 year post-trauma, respectively).

Participation after acquired brain injury: clinical and psychometric considerations of the Sydney Psychosocial Reintegration Scale (SPRS).

OBJECTIVE: To examine the psychometric qualities and develop the clinical utility of the Sydney Psychosocial Reintegration Scale (SPRS) as a measure of participation in people with traumatic brain injury. DESIGN: Data generated from previous prospective studies. SUBJECTS/PATIENTS: Convenience samples of healthy community-based volunteers (n=105) and people with severe brain injury (n=510). METHODS: (i) The equivalence of a new 5-point version of the SPRS was determined vs the original 7-point version; (ii) construct validity was tested using Rasch analyses; (iii) normative and comparative data tables were produced, and data examined for floor/ceiling effects; (iv) a reliable change index score was generated. RESULTS: Patterns of psychometric properties for the 5- and 7-point versions were almost identical (e.g. total scores rs=0.98). Rasch analyses on Forms A and B found good fit to the model, for person (3.36 and 3.03, respectively) and item (7.78 and 7.25, respectively) separation; reliability coefficients were high (all ≥ 0.90). Mean infit statistics met standard criteria (between 0.7 and 1.3). No floor/ceiling effects were detected. The reliable change index value was calculated for the total score for Form A using logit scores, and a conversion table provided. CONCLUSION: The 5-point version of the SPRS demonstrates strong psychometric qualities as a measure of participation after traumatic brain injury.

Validity and responsiveness of the care and needs scale for assessing support needs after traumatic brain injury.

OBJECTIVE: To investigate the validity and responsiveness of the Care and Needs Scale (CANS), which was designed to assess support needs of people with traumatic brain injury (TBI). DESIGN: Two samples of community clients (n=38, n=30) were recruited to examine concurrent, convergent/divergent, and discriminant validity. The ability of the CANS to detect change over a 6-month period from the time of inpatient rehabilitation discharge (predictive validity and responsiveness) was investigated in a third sample of 40 rehabilitation inpatients. SETTING: Two Brain Injury Rehabilitation Units in Sydney, Australia. PARTICIPANTS: People (N=108) aged between 16 and 70 years admitted for rehabilitation after TBI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The CANS, Supervision Rating Scale, FIM, Sydney Psychosocial Reintegration Scale, and Disability Rating Scale. RESULTS: Evidence for concurrent validity was shown with fair to moderate correlation coefficients between the CANS and measures of supervision, functional independence, and psychosocial functioning (absolute value, r(s)=.43-.68; P<.01). Support for convergent and divergent validity was provided by correlation coefficients that were higher for measures tapping similar constructs (absolute value, r(s)=46; P<.01) but lower for measures of dissimilar constructs (absolute value, r(s)=.07-.26; not significant). In addition, the CANS discriminated between levels of injury severity, functional independence, and overall functioning (P<.01). In terms of predictive validity and responsiveness, CANS scores at inpatient rehabilitation discharge predicted the participant's functioning 6 months later. CONCLUSIONS: These results show the CANS is a valid and responsive tool and, together with its previously shown reliability, is suitable for routine application in clinical and research practice.

Psychological treatment for anxiety in people with traumatic brain injury

It provides information about the effects of psychological treatments for anxiety in patients with traumatic brain injuries.

Development and validation of the Paediatric Care and Needs Scale (PCANS) for assessing support needs of children and youth with acquired brain injury.

AIM: The Paediatric Care and Needs Scale (PCANS) is a newly developed scale that assesses support needs following childhood acquired brain injury (ABI). It yields three measures of support: overall, extent and intensity. The developmental process of the PCANS is described and concurrent and construct validity examined. METHOD: In the validation study, 32 parents/caregivers of children with ABI aged 5-18 years completed the PCANS and other validating measures: Vineland Adaptive Behavior Scales (VABS), Functional Independence Measure for Children (Wee-FIM) and King's Outcome Scale of Childhood Head Injury (KOSCHI). VABS and Wee-FIM sub-scales examining similar and dissimilar domains to the PCANS were used to investigate convergent and divergent validity, respectively. Discriminant validity analysis used sub-groups dichotomized by VABS and KOSCHI data. RESULTS: Statistically significant correlation coefficients of moderate-to-strong magnitude were found between the PCANS support intensity score and most of the VABS, Wee-FIM and KOSCHI variables (r(s) = -0.46 to r(s) = -0.77, p < 0.01). Some evidence for convergent and divergent validity was also found. Correlation coefficients between similar domains of the PCANS and other scales were moderately high (e.g. VABS socialization vs PCANS psychosocial items, r(s) = -0.64, p < 0.01). Conversely, correlation coefficients between dissimilar domains were low (e.g. Wee-FIM self-care vs PCANS psychosocial items, r(s) = -0.29). In terms of discriminant group differences, PCANS support extent and intensity scores were able to distinguish between sub-groups dichotomized by VABS and KOSCHI scores. CONCLUSIONS: These findings provide preliminary evidence for the validity of the PCANS for assessing support needs after paediatric ABI.

Reliability of the care and needs scale for assessing support needs after traumatic brain injury.

OBJECTIVE: To investigate the reliability of the Care and Needs Scale (CANS) for measuring the level and types of support needs of people with traumatic brain injury (TBI). METHOD: Interrater reliability was examined in a cohort of 30 community clients with TBI by comparing CANS ratings completed by 2 occupational therapists (OTs) and a case manager. CANS ratings on the same clients were also completed 1 week later to examine test-retest reliability. Reliability of proxy ratings was investigated in a cohort of 40 community clients with TBI by comparing CANS ratings completed by a clinical researcher, multidisciplinary team, relative, and client. RESULTS: Level of support need as measured by the CANS showed excellent interrater reliability both within and across disciplines: ICC = 0.95 between 2 OTs and ICC = 0.93 and 0.96 between OTs and case manager. Test-retest reliability of the CANS over a 1-week period was also excellent (ICC = 0.98). Although the agreement between the clinical researcher and multidisciplinary team was excellent (ICC = 0.92), ICCs with relative and client ratings were variable, ranging from 0.37 to 0.72. CONCLUSIONS: The excellent inter-rater and test-retest reliability findings from this present study, together with the evidence for validity reported previously, indicate that the CANS is a reliable and valid instrument for application in clinical practice.