Mental and Physical Health Comorbidities in Traumatic Brain Injury: A Non-TBI Controls Comparison.

OBJECTIVE: To examine whether aging with a TBI was associated with a greater burden of health-related comorbidities compared with a non-TBI control cohort and examine the associations between comorbidity burden, emotional outcomes, and health-related quality of life (HRQoL) after TBI across ages. DESIGN: Cross-sectional. SETTING: Research center or telephone. PARTICIPANTS: The study included 559 participants (NTBI=291, NControls=268). Participants with TBI were recruited during inpatient rehabilitation and had sustained a moderate-severe TBI 1-33 years previously. Non-TBI controls were a convenience sample recruited through advertisements in the community. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The number of cardiovascular, general physical health, and mental health comorbidities was compared between cohorts and age strata using Poisson regression. The relationships between comorbidities, age, emotional outcomes (Generalized Anxiety Disorder Scale-7, Patient Health Questionnaire-9), and HRQoL (PROMIS Global Health Measure) were examined with linear regression. Distinct subgroups of comorbidities were identified using latent class analysis. Associations between comorbidity classes with demographic and outcome variables were evaluated using multinomial logistic and linear regressions, respectively. RESULTS: TBI participants had a significantly higher comorbidity burden than controls, primarily driven by elevated rates of mental health disorders (RR=2.71, 95% confidence interval [1.37, 5.35]). Cardiovascular and physical health comorbidities were not elevated in the TBI group compared with controls. Both cohorts had 3 similar comorbidity subgroups, suggesting consistent patterns of co-occurring health conditions regardless of TBI exposure. Physical and mental health comorbidities were associated with elevated depression and anxiety symptoms and diminished HRQoL after TBI compared with controls. CONCLUSION: TBI was associated with greater mental, but not physical, health comorbidities in the decades after injury. However, physical and mental health comorbidities significantly affected emotional and HRQoL status after TBI, underscoring a greater need for long-term support for individuals with TBI coping with both physical and mental health comorbidities.

Effectiveness of Non-Pharmacological Interventions for Agitation during Post-Traumatic Amnesia following Traumatic Brain Injury: A Systematic Review.

Agitation is common in the early recovery period following traumatic brain injury (TBI), known as post-traumatic amnesia (PTA). Non-pharmacological interventions are frequently used to manage agitation, yet their efficacy is largely unknown. This systematic review aims to synthesize current evidence on the effectiveness of non-pharmacological interventions for agitation during PTA in adults with TBI. Key databases searched included MEDLINE Ovid SP interface, PubMed, CINAHL, Excerpta Medica Database, PsycINFO and CENTRAL, with additional online reviewing of key journals and clinical trial registries to identify published or unpublished studies up to May 2020. Eligible studies included participants aged 16 years and older, showing agitated behaviours during PTA. Any non-pharmacological interventions for reducing agitation were considered, with any comparator accepted. Eligible studies were critically appraised for methodological quality using Joanna Briggs Institute Critical Appraisal Instruments and findings were reported in narrative form. Twelve studies were included in the review: two randomized cross-over trials, three quasi-experimental studies, four cases series and three case reports. Non-pharmacological interventions were music therapy, behavioural strategies and environmental modifications, physical restraints and electroconvulsive therapy. Key methodological concerns included absence of a control group, a lack of formalised agitation measurement and inconsistent concomitant use of pharmacology. Interventions involving music therapy had the highest level of evidence, although study quality was generally low to moderate. Further research is needed to evaluate non-pharmacological interventions for reducing agitation during PTA after TBI.Systematic review registration number: PROSPERO (CRD42020186802), registered May 2020.

Effectiveness of Pharmacotherapy for Depression after Adult Traumatic Brain Injury: an Umbrella Review.

Symptoms of depression are common following traumatic brain injury (TBI), impacting survivors' ability to return to work, participate in leisure activities, and placing strain on relationships. Depression symptoms post TBI are often managed with pharmacotherapy, however, there is little research evidence to guide clinical practice. There have been a number of recent systematic reviews examining pharmacotherapy for post TBI depression. The aim of this umbrella review was to synthesize systematic reviews and meta-analyses of the effectiveness of pharmacotherapy for the management of post TBI depression in adults. Eligible reviews examined any pharmacotherapy against any comparators, for the treatment of depression in adults who had sustained TBI. Seven databases were searched, with additional searching of online journals, Research Gate, Google Scholar and the TRIP Medical Database to identify published and unpublished systematic reviews and meta-analyses in English up to May 2020. A systematic review of primary studies available between March 2018 and May 2020 was also conducted. Evidence quality was assessed using Joanna Briggs Institute Critical Appraisal Instruments. The results are presented as a narrative synthesis. Twenty-two systematic reviews were identified, of which ten reviews contained a meta-analysis. No new primary studies were identified in the systematic review. There was insufficient high quality and methodologically rigorous evidence to recommend prescribing any specific drug or drug class for post TBI depression. The findings do show, however, that depression post TBI is responsive to pharmacotherapy in at least some individuals. Recommendations for primary studies, systematic reviews and advice for prescribers is provided. Review Registration PROSPERO (CRD42020184915).

Ten-Year Cohort Study of Emotional Distress Trajectories After Moderate-Severe Traumatic Brain Injury.

OBJECTIVE: To characterize trajectories of emotional distress across the first decade after moderate-severe traumatic brain injury (TBI) and explore relations with personal and injury-related factors. DESIGN: Cohort study with follow-ups at 1, 2, 3, 5, and 10 years post-injury. SETTING: Community. PARTICIPANTS: Participants were sampled from a larger longitudinal study of 4300 individuals recruited from consecutive inpatient TBI admissions to a rehabilitation hospital between 1985 and 2021 (N=4300). We analyzed data from 596 unique individuals (13.86% of total dataset; 70.81% male; Mage=40.11 years, SDage=17.49 years; 7.59% non-English-speaking background) with moderate-severe TBI who had complete data on all personal and injury-related variables (collected on admission) and emotional data at 3 or more time-points. There were 464 participants at the 1-year post-injury time-point, 485 at 2 years, 454 at 3 years, 450 at 5 years, and 248 at 10 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The Hospital Anxiety and Depression Scale (HADS). RESULTS: Visualization of the individual HADS symptoms (line graph) showed that the most highly endorsed symptoms at each time-point were feeling slowed down and restlessness. On average, each symptom reduced across the first decade post-TBI, with an overall mild level of emotional distress at 10 years. However, visualization of participants' individual trajectories based on the HADS total score (Sankey diagram) revealed significant heterogeneity. Using latent class analysis, we identified 5 distinct trajectory types based on the HADS total score: "Gradual Improving" (38.93%), "Resilience" (36.41%), "Gradual Worsening" (10.40%), and 2 non-linear trajectories of "Worsening-Remitting" (8.22%) and "Improving-Relapsing" (6.04%). Middle age at injury, lower Glasgow Coma Scale score, comorbid spinal and limb injuries, and receipt of pre-injury mental health treatment predicted earlier and/or worsening post-injury emotional distress. CONCLUSIONS: Emotional distress across the first decade after moderate-severe TBI is dynamic, heterogeneous, and often chronic, underscoring a need for ongoing monitoring and responsive treatment.

Clinical perspectives on delivering a Positive Behaviour Support intervention for challenging behaviours following acquired brain injury.

Challenging behaviours are distressing sequelae for people with acquired brain injury (ABI) and their families. Positive Behaviour Support (PBS) is a collaborative approach focussing on improving quality of life for individuals with ABI presenting with challenging behaviours. This qualitative study explored clinicians' experiences of a 12-month intervention (PBS+PLUS) for adults with ABI and their family/carers. Semi-structured interviews were conducted with eight clinicians trained in neuropsychology (n = 5), occupational therapy (n = 3), speech pathology (n = 2), with two clinicians trained in two of these disciplines. Interviews were analysed through reflexive thematic analysis. Three themes were identified: Shifting clinical identity; Working as equals; Adapting to the environment. Participants experienced PBS+PLUS as a difficult approach to learn but one which enhanced overt client communication and comfort with their clinical fallibility. PBS+PLUS involved giving clients equal status in the clinician-client relationship which for some clients and families was challenging. Finally, PBS+PLUS was perceived as problematic to implement in some work settings (e.g., involving high staff turnover). Clinicians' recommendations for future implementation included thorough training and supervision and early setting of client expectations. With increasing interest in PBS to address challenging behaviours after ABI, these findings will guide PBS+PLUS translation for community clinicians.

Individualized goal attainment scaling during a trial of positive behaviour support in adults with acquired brain injury.

BACKGROUND: Challenging behaviours after acquired brain injury (ABI) cause distress and reduce community participation. Evidence-based and effective interventions are needed. Positive Behaviour Support (PBS) interventions, such as PBS + PLUS, are person-driven and context-sensitive approaches which aim to improve quality of life and enhance behavioural self-regulation. This study aimed to expand the empirical outcomes of a recent waitlist-controlled trial of PBS + PLUS by examining individualized goal attainment. METHOD: Participants were 44 adults with severe ABI sustained on average nine years previously (Range = 0.6-26) from the combined trial cohort who completed the intervention. Using Goal Attainment Scaling, trial therapists developed and reviewed goals collaboratively with the person with ABI and their natural supports. RESULTS: The 182 goals in the sample focussed on psychological wellbeing, interpersonal relationships, routines and self-care. By the end of 12-month intervention, 84.6% of goals were achieved and 53.3% exceeded their expected outcome. CONCLUSIONS: These findings indicate high levels of personally meaningful outcomes in a broad range of life-domains can be obtained for participants with severe ABI using PBS + PLUS. Whilst these results should be considered in combination with the findings of the waitlist-controlled trial, they contribute to the growing literature regarding benefits of PBS in enhancing quality of life post-ABI. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry identifier: ACTRN12616001704482.

Does cognitive decline occur decades after moderate to severe traumatic brain injury? A prospective controlled study.

This prospective controlled study examined long-term trajectories of neuropsychological performance in individuals with traumatic brain injury (TBI) compared to healthy controls, and the impact of IQ, age at injury, time since injury, and injury severity on change over time. Fifty-three individuals with moderate to severe TBI (60.37% male; M = 59.77 yrs, SD = 14.03), and 26 controls (46.15% male; M = 63.96 yrs, SD = 14.42) were studied prospectively (M = 12.72 yrs between assessments). Participants completed measures of premorbid IQ (Weschler Test of Adult Reading), processing speed (Digit Symbol Coding Test), working memory (Digit Span Backwards), memory (Rey Auditory Verbal Learning Test) and executive function (Trail Making Test Part B; Hayling Errors), at a mean of 10.62 yrs (Initial) and 23.91 yrs (Follow-Up) post injury. Individuals with TBI did not show a significantly greater decline in neuropsychological performance over time compared with demographically similar controls. There was no association between change over time with IQ, time since injury or injury severity. Being older at injury had a greater adverse impact on executive function at follow-up. In this small sample, a single moderate to severe TBI was not associated with ongoing cognitive decline up to three decades post injury. Changes in cognitive function were similar between the groups and likely reflect healthy aging.

"I've never been positive I am now": Participant perspectives of a Positive Behaviour Support intervention (PBS + PLUS) for community-living individuals with ABI and their close others.

Challenging behaviours are common following moderate to severe acquired brain injury (ABI). These behaviours cause relationship and community participation difficulties and are a significant source of stress for many individuals with ABI and their close others (COs). A Positive Behaviour Support intervention, PBS + PLUS, was implemented to assist individuals with ABI to collaboratively build meaningful lives and self-regulate their behaviour. This study explored the perspectives of individuals with ABI and COs (family members, friends, and carers) who had completed an individualized 12-month PBS + PLUS intervention. Fifty-two individuals participated in semi-structured interviews, and a thematic analysis of interview transcripts identified the interrelated themes of Openness to Change, Embeddedness, Clinician Connection, and Preparedness for the Future. Participant perceptions of, and engagement with, PBS + PLUS were influenced by an attitude of openness to new ideas and by the intervention itself. Achieving contextual relevance allowed the intervention to become embedded in participants' lives, and the client-clinician relationship was central to participants' positive experiences. While most participants felt better equipped to cope with the future, some experienced difficulties transitioning to post-intervention life. These results suggest PBS + PLUS may assist individuals with ABI to lead meaningful lives and more confidently overcome behavioural challenges, while encouraging supportive and empowered COs.

Surviving the "silent epidemic": A qualitative exploration of the long-term journey after traumatic brain injury.

Previous studies examining life after traumatic brain injury (TBI) have taken a predominantly short-term and quantitative perspective, with generally narrow focus, and have not specifically investigated changes in experience over time post-injury to gain a uniquely long-term perspective. This study therefore aimed to qualitatively explore the broad long-term experience of living for 10 years or more with TBI. Thirty participants completed semi-structured interviews investigating the impact of TBI on various life domains, the rehabilitation experience and support received, and overall perspectives of the long-term journey after TBI. Results demonstrated that: (a) although some participants reported full recovery, several experienced persistent physical, cognitive and emotional problems that impacted their independence, employment and interpersonal relationships; (b) early rehabilitation was very helpful, but some participants experienced difficulties accessing ongoing services; (c) family and social support were important to recovery; (d) most participants drew upon inner strength to find positives in their experience. These findings have identified factors that facilitate and impede long-term recovery from TBI, which may inform better support and care for injured individuals over the years after injury to improve their quality of life.

Positive behaviour support for challenging behaviour after acquired brain injury: An introduction to PBS + PLUS and three case studies.

Challenging behaviours are a common and distressing consequence of acquired brain injury (ABI). There are no evidence-based guidelines for managing challenging behaviours after ABI, leaving clinicians with few resources to guide practice. Findings from case studies and single-subject experimental designs support the use of positive behaviour support (PBS) interventions for challenging behaviour post-ABI. This paper introduces PBS + PLUS: a multi-component and flexible PBS intervention using a person-driven collaborative approach to build a meaningful life and self-regulate behaviour after ABI. PBS + PLUS is currently being examined in a randomized controlled trial (RCT). Three detailed pilot case studies illustrate the highly individualized implementation of the programme, delivered to the individuals with ABI and carers over 12 months by a transdisciplinary team including neuropsychologists, occupational therapists, and psychiatrists. Objective behavioural outcomes are reported for participants using the Overt Behaviour Scale at baseline and four-monthly intervals for two years. Goal attainment scaling was used to measure personally meaningful goals. The qualitative appraisals of the intervention by participants, families and carers, and 12-month follow-up outcomes are described. The advantages and challenges of programme delivery are discussed. These case studies will assist clinicians and service providers to implement PBS + PLUS in anticipation of the results of the RCT.

Pharmacotherapy for the Pseudobulbar Affect in Individuals Who Have Sustained a Traumatic Brain Injury: a Systematic Review.

Pseudobulbar affect is a debilitating condition that significantly reduces quality of life for many individuals following traumatic brain injury (TBI). It is characterized by embarrassing and often uncontrollable episodes of crying or laughter. The aim of this systematic review was to evaluate the effectiveness of pharmacotherapy as compared to all other comparators for the management of pseudobulbar affect in adults who have sustained TBI. Six databases were searched, with additional hand searching of journals, clinical trials registries and international drug regulators to identify published and unpublished studies in English up to June 2018. Studies were eligible for this review if they included adults who had sustained a medically confirmed TBI and presented with pseudobulbar affect. All pharmacotherapy and comparator interventions were considered for inclusion, and study design was not limited to randomised controlled trials. Evidence quality was assessed using Joanna Briggs Institute Critical Appraisal Instruments. Two quasi-experimental studies examining the effectiveness of dextrometamorphan/quinidine (DM/Q) were identified. These studies reported that DM/Q was effective in reducing symptoms of pseudobulbar affect and had a positive safety profile, over follow-up periods of 3 months (n = 87) and 12 months (n = 23). However, both studies were limited by lack of a control group and a high dropout rate. The findings of twelve case reports examining the effectiveness of DM/Q (n = 6) and anti-depressants (n = 6) are also discussed. Further research is required to determine which pharmacological interventions provide the best outcomes for individuals with pseudobulbar affect following TBI, with consideration given to side effect profiles and financial costs.

The experience of a recreational camp for families with a child or young person with acquired brain injury.

The Heads Together organisation provides a weekend camping programme for children with an acquired brain injury (ABI) and their families. Utilising a qualitative approach, this study explored family experiences of the Heads Together Camp (HTC) from the perspective of parents. Semi-structured interviews were conducted with 11 parents who had attended the camp. Thematic analysis identified six themes: ABI and the family; Apprehension and discomfort; Connections and community; Hope and perspective; Fun, relaxation and respite; and Family functioning. Families experienced initial feelings of apprehension at camp, which attenuated as connections developed between camp attendees. These connections were grounded in shared experiences of ABI and enabled families to become part of an accepting community, feel less alone and share information. The camp environment also facilitated fun and relaxation, provided families with hope and perspective, and led to improvements in family relationships. Overall, recreational camps may mitigate some stressors experienced by families affected by ABI. Camps could be used to support families by providing them with connections, fun and relaxation, a sense of normality and hope for the future. Thus, recreational camps may represent an effective allied support service for this population.

Klüver-Bucy Syndrome Following Traumatic Brain Injury: A Systematic Synthesis and Review of Pharmacological Treatment From Cases in Adolescents and Adults.

Klüver-Bucy syndrome (KBS) is a rare clinical presentation following traumatic brain injury (TBI). Symptoms include visual agnosia, placidity, hyperorality, sexual hyperactivity, changes in dietary behavior, and hypermetamorphosis. The purpose of this article was to identify and synthesize the available evidence from case reports and case series on the treatment profile of KBS among adolescents and adults after TBI. Four bibliographic databases (MEDLINE OVID, EMBASE, PsycINFO, and SCOPUS) were searched for relevant literature. No date or language restrictions were applied. All case reports containing original data on KBS following TBI among adolescents and adults were included. Articles were evaluated, and data were extracted according to predefined criteria. The literature search identified 24 case reports of KBS post-TBI published between 1968 and 2017. Most case subjects were male (70.1%), and the mean age at injury was 25.1 years (range, 13-67 years). Injury to one or both temporal lobes occurred in most cases. Inappropriate sexual hyperactivity was the most common KBS symptom, followed by a change in dietary behavior and hyperorality. Visual agnosia was the least reported. In 50% of cases, the patient fully recovered from KBS. One-half of all participants described pharmacological management; the most common medication prescribed was carbamazepine. Overall, there was a lack of data available on pharmacotherapy initiation and duration. The complex presentation of KBS presents challenges in terms of treatment options. Although overall individuals who were prescribed carbamazepine had positive outcomes, given the reliance on case reports, it is difficult to make a definitive recommendation to guide clinical practice.

The lived experience of behaviours of concern: A qualitative study of men with traumatic brain injury.

BACKGROUND AND AIMS: Behaviours of Concern (BoC) are a debilitating consequence of Traumatic Brain Injury (TBI). Whilst perspectives of clinicians, carers and family members on BoC have been previously explored, few qualitative studies have included individuals with TBI. The aim of this study was to explore the lived experience of BoC in individuals with TBI, their close others and clinicians. METHOD: Eleven males with TBI and BoC were recruited and 25 semi-structured qualitative interviews were conducted (9 individuals with TBI, 9 close others, 7 clinicians). A six-phase thematic analysis approach was utilised. RESULTS: Frequent and persistent BoC were reported and the key themes identified included the brain injury, control, environment, mood, identity, social relationships, and meaningful participation. Whilst the brain injury contributed to BoC in all cases, the way the other themes manifested and interacted was variable. CONCLUSIONS: This study enriches our understanding of factors associated with BoC. Themes emerging from this study will inform interventions designed to reduce BoC and ultimately maximise quality of life for individuals with TBI and their families.

The utility of the Cognitive Reserve Index questionnaire in chronic traumatic brain injury.

Objective: This study examined the relationship between cognitive reserve measured with the Cognitive Reserve Index questionnaire (CRIq) and cognitive and functional outcomes in a chronic traumatic brain injury (TBI) cohort compared to a non-TBI cohort. The utility of the CRIq was compared to common proxies of cognitive reserve (premorbid IQ and years of education) in TBI and non-TBI cohorts. Method: Participants were 105 individuals with moderate-severe TBI (10-33 years post injury) and 91 participants without TBI. Cognitive outcome was examined across four cognitive factors; verbal memory, visual ability and memory, executive attention, and episodic memory. Functional outcome was measured using the Glasgow Outcome Scale Extended. The CRIq total score and three subscale scores (education, work, leisure) were examined. Results: In the TBI cohort, associations were identified between two CRIq subscales and cognitive factors (CRIq education and verbal memory; CRIq work and executive attention). There were no associations between CRIq leisure and cognitive outcomes, or between CRIq and functional outcome. Model selection statistics suggested premorbid IQ and years of education provided a better fit than the CRIq for the relationship between cognitive reserve with two cognitive factors and functional outcome, with neither model providing an improved fit for the remaining two cognitive factors. This finding was broadly consistent in the non-TBI cohort. Conclusion: Cognitive reserve contributes significantly to long-term clinical outcomes following moderate-severe TBI. The relationship between cognitive reserve and long-term cognitive and functional outcomes following TBI is best characterised with traditional proxies of cognitive reserve, mainly premorbid IQ, rather than the CRIq.

Altered grey matter structural covariance in chronic moderate-severe traumatic brain injury.

Traumatic brain injury (TBI) alters brain network connectivity. Structural covariance networks (SCNs) reflect morphological covariation between brain regions. SCNs may elucidate how altered brain network topology in TBI influences long-term outcomes. Here, we assessed whether SCN organisation is altered in individuals with chronic moderate-severe TBI (≥ 10 years post-injury) and associations with cognitive performance. This case-control study included fifty individuals with chronic moderate-severe TBI compared to 75 healthy controls recruited from an ongoing longitudinal head injury outcome study. SCNs were constructed using grey matter volume measurements from T1-weighted MRI images. Global and regional SCN organisation in relation to group membership and cognitive ability was examined using regression analyses. Globally, TBI participants had reduced small-worldness, longer characteristic path length, higher clustering, and higher modularity globally (p < 0.05). Regionally, TBI participants had greater betweenness centrality (p < 0.05) in frontal and central areas of the cortex. No significant associations were observed between global network measures and cognitive ability in participants with TBI (p > 0.05). Chronic moderate-severe TBI was associated with a shift towards a more segregated global network topology and altered organisation in frontal and central brain regions. There was no evidence that SCNs are associated with cognition.

The Australian Traumatic Brain Injury Initiative: Review and Recommendations for Outcome Measures for Use With Adults and Children After Moderate-to-Severe Traumatic Brain Injury.

The Australian Traumatic Brain Injury Initiative (AUS-TBI) aims to select a set of measures to comprehensively predict and assess outcomes following moderate-to-severe traumatic brain injury (TBI) across Australia. The aim of this article was to report on the implementation and findings of an evidence-based consensus approach to develop AUS-TBI recommendations for outcome measures following adult and pediatric moderate-to-severe TBI. Following consultation with a panel of expert clinicians, Aboriginal and Torres Strait Islander representatives and a Living Experience group, and preliminary literature searches with a broader focus, a decision was made to focus on measures of mortality, everyday functional outcomes, and quality of life. Standardized searches of bibliographic databases were conducted through March 2022. Characteristics of 75 outcome measures were extracted from 1485 primary studies. Consensus meetings among the AUS-TBI Steering Committee, an expert panel of clinicians and researchers and a group of individuals with lived experience of TBI resulted in the production of a final list of 11 core outcome measures: the Functional Independence Measure (FIM); Glasgow Outcome Scale-Extended (GOS-E); Satisfaction With Life Scale (SWLS) (adult); mortality; EuroQol-5 Dimensions (EQ5D); Mayo-Portland Adaptability Inventory (MPAI); Return to Work /Study (adult and pediatric); Functional Independence Measure for Children (WEEFIM); Glasgow Outcome Scale Modified for Children (GOS-E PEDS); Paediatric Quality of Life Scale (PEDS-QL); and Strengths and Difficulties Questionnaire (pediatric). These 11 outcome measures will be included as common data elements in the AUS-TBI data dictionary. Review Registration PROSPERO (CRD42022290954).

The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological Conditions.

The Australian Traumatic Brain Injury Initiative (AUS-TBI) aims to develop a health informatics approach to collect data predictive of outcomes for persons with moderate-severe TBI across Australia. Central to this approach is a data dictionary; however, no systematic reviews of methods to define and develop data dictionaries exist to-date. This rapid systematic review aimed to identify and characterize methods for designing data dictionaries to collect outcomes or variables in persons with neurological conditions. Database searches were conducted from inception through October 2021. Records were screened in two stages against set criteria to identify methods to define data dictionaries for neurological conditions (International Classification of Diseases, 11th Revision: 08, 22, and 23). Standardized data were extracted. Processes were checked at each stage by independent review of a random 25% of records. Consensus was reached through discussion where necessary. Thirty-nine initiatives were identified across 29 neurological conditions. No single established or recommended method for defining a data dictionary was identified. Nine initiatives conducted systematic reviews to collate information before implementing a consensus process. Thirty-seven initiatives consulted with end-users. Methods of consultation were "roundtable" discussion (n = 30); with facilitation (n = 16); that was iterative (n = 27); and frequently conducted in-person (n = 27). Researcher stakeholders were involved in all initiatives and clinicians in 25. Importantly, only six initiatives involved persons with lived experience of TBI and four involved carers. Methods for defining data dictionaries were variable and reporting is sparse. Our findings are instructive for AUS-TBI and can be used to further development of methods for defining data dictionaries.

The Australian Traumatic Brain Injury Initiative: Systematic Review and Consensus Process to Determine the Predictive Value of Pre-existing Health Conditions for People with Moderate-Severe Traumatic Brain Injury.

The first aim of the Australian Traumatic Brain Injury Initiative (AUS-TBI) encompasses development of a set of measures that comprehensively predict outcomes for people with moderate-severe TBI across Australia. This process engaged diverse stakeholders and information sources across six areas: social, health, and clinical factors; biological markers; treatments; and longer-term outcomes. Here, we report the systematic review of pre-existing health conditions as predictors of outcome for people with moderate-severe TBI. Standardized searches were implemented across databases until March 31, 2022. English-language reports of studies evaluating association between pre-existing health conditions and clinical outcome in at least 10 patients with moderate-severe TBI were included. A predefined algorithm was used to assign a judgement of predictive value to each observed association. The list of identified pre-existing health conditions was then discussed with key stakeholders during a consensus meeting to determine the feasibility of incorporating them into standard care. The searches retrieved 22,217 records, of which 47 articles were included. The process led to identification of 88 unique health predictors (homologized to 21 predictor categories) of 55 outcomes (homologized to 19 outcome categories). Only pre-existing health conditions with high and moderate predictive values were discussed during the consensus meeting. Following the consensus meeting, 5 out of 11 were included (migraine, mental health conditions, ≥4 pre-existing health conditions, osteoporosis, and body mass index [BMI]) as common data elements in the AUS-TBI data dictionary. Upon further discussion, 3 additional pre-existing health conditions were included. These are pre-existing heart disease, frailty score, and previous incidence of TBI.

The Australian Traumatic Brain Injury Initiative: Systematic Review of the Effect of Acute Interventions on Outcome for People With Moderate-Severe Traumatic Brain Injury.

The Australian Traumatic Brain Injury Initiative (AUS-TBI) is developing a data resource to enable improved outcome prediction for people with moderate-severe TBI (msTBI) across Australia. Fundamental to this resource is the collaboratively designed data dictionary. This systematic review and consultation aimed to identify acute interventions with potential to modify clinical outcomes for people after msTBI, for inclusion in a data dictionary. Standardized searches were implemented across bibliographic databases from inception through April 2022. English-language reports of randomized controlled trials (RCTs) evaluating any association between any acute intervention and clinical outcome in at least 100 patients with msTBI, were included. A predefined algorithm was used to assign a value to each observed association. Consultation with AUS-TBI clinicians and researchers formed the consensus process for interventions to be included in a single data dictionary. Searches retrieved 14,455 records, of which 124 full-length RCTs were screened, with 35 studies included. These studies evaluated 26 unique acute interventions across 21 unique clinical outcomes. Only 4 interventions were considered to have medium modifying value for any outcome from the review, with an additional 8 interventions agreed upon through the consensus process. The interventions with medium value were tranexamic acid and phenytoin, which had a positive effect on an outcome; and decompressive craniectomy surgery and hypothermia, which negatively affected outcomes. From the systematic review and consensus process, 12 interventions were identified as potential modifiers to be included in the AUS-TBI national data resource.