Psychosocial functioning following moderate-to-severe pediatric traumatic brain injury: recommended outcome instruments for research and remediation studies.

Psychosocial functioning is compromised following pediatric traumatic brain injury (TBI), with the past few decades witnessing a proliferation of research examining the effect of childhood brain insult on a range of psychosocial outcomes. This paper describes the systematic recommendation of outcome instruments to address psychosocial functioning following pediatric TBI.A total of 65 instruments across 11 psychosocial areas (i.e., Global Outcome, Communication, Social Cognition, Behavioural and Executive Function, Other Neuropsychological Functioning, Psychological Status, TBI-related Symptoms, Activities and Participation, Support and Relationships, Sense of Self, and Health-Related Quality of Life) were reviewed using various assessment methods, including working groups, literature searches, comparisons with selection guidelines, and international expert opinion. Each measure was reviewed for its usefulness across early recovery, intervention, and outcome related studies.34 instruments were recommended and classified according to the World Health Organization's International Classification of Functioning, Disability and Health taxonomy and categorised by psychosocial area.This compilation provides a common framework to guide the activities of clinicians and researchers in psychosocial rehabilitation. It is anticipated that these will foster a multidisciplinary approach to psychosocial dysfunction to enhance the evaluation, prediction, and improvement of functional outcomes for those with pediatric TBI.

Evaluating an intervention to increase meaningful activity after severe traumatic brain injury: A single-case experimental design with direct inter-subject and systematic replications.

Severe traumatic brain injury (sTBI) often results in significant morbidity, with fewer than 50% returning to work and only a minority resuming leisure and social activity. Yet few effective interventions are available for non-vocational activity. The aim of the study was to develop a new goal-directed intervention, the Programme for Engagement, Participation and Activities (PEPA), and evaluate its effect. The research design was a multiple-baseline design across behaviours, with direct inter-subject and systematic replications. Seven participants with sTBI, neurobehavioural impairment including apathy, inability to work, and limited leisure/social activities were categorised into two groups. Group 1 (n = 4) had cognitive impairments but were functionally independent. Systematic replication was conducted in a further three participants (group 2) with major neurobehavioural impairments and functional disability. Generalisation measures evaluated other life domains in group 1 participants (e.g., mood, community participation). Results of the weighted average Tau-U across the tiers was significant for six out of seven participants, with large effect sizes (≥.64) for five participants. Generalisation effects extended to other domains of life. The PEPA thus shows promise as an effective intervention to increase non-vocational activity and improve mental health outcomes in people with neurobehavioural disability after sTBI. These results add to the evidence for the effectiveness of goal-directed interventions.

Outcome instruments in moderate-to-severe adult traumatic brain injury: recommendations for use in psychosocial research.

BACKGROUND: Traumatic brain injury (TBI) can reduce psychosocial functioning, causing relationship, family, and employment difficulties. The present study by Moving Ahead: Centre for Research Excellence (CRE) in Brain Recovery aimed to identify a set of adult outcome instruments for moderate-to-severe TBI psychosocial research. PROCEDURE: A review of 115 instruments (identified through nomination, literature search, and international expert opinion) was conducted over a 15-month period. Eleven psychosocial areas were examined: Global Outcome, Communication, Social Cognition, Behavioural and Executive Function, Other Neuropsychological Functioning, Psychological Status, TBI-related Symptoms, Activities and Participation, Support and Relationships, Sense of Self, and Health-related Quality of Life. Individual instruments were considered against selection guidelines, and specific measures that best met the guidelines were identified as core (common across all studies), supplemental (dependent on study type) or emerging. RESULTS: The final recommendations, organised in accordance with the World Health Organisation's International Classification of Functioning taxonomy, comprised 56 instruments for use in early recovery, outcome, and intervention studies. CONCLUSION: These recommendations provide a coherent framework along with identified outcome instruments to guide psychosocial research in moderate-to-severe TBI. Adherence to the recommendations will enable data-pooling and comparison across studies and research settings facilitating consistent measurement across the lifespan.

Computerised cognitive training in acquired brain injury: A systematic review of outcomes using the International Classification of Functioning (ICF).

Computerised cognitive training (CCT) is an increasingly popular intervention for people experiencing cognitive symptoms. This systematic review evaluated the evidence for CCT in adults with acquired brain injury (ABI), focusing on how outcome measures used reflect efficacy across components of the International Classification of Functioning, Disability and Health. Database searches were conducted of studies investigating CCT to treat cognitive symptoms in adult ABI. Scientific quality was rated using the PEDro-P and RoBiNT Scales. Ninety-six studies met the criteria. Most studies examined outcomes using measures of mental functions (93/96, 97%); fewer studies included measures of activities/participation (41/96, 43%) or body structures (8/96, 8%). Only 14 studies (15%) provided Level 1 evidence (randomised controlled trials with a PEDro-P score ≥ 6/10), with these studies suggesting strong evidence for CCT improving processing speed in multiple sclerosis (MS) and moderate evidence for improving memory in MS and brain tumour populations. There is a large body of research examining the efficacy of CCT, but relatively few Level 1 studies and evidence is largely limited to body function outcomes. The routine use of outcome measures of activities/participation would provide more meaningful evidence for the efficacy of CCT. The use of body structure outcome measures (e.g., neuroimaging) is a newly emerging area, with potential to increase understanding of mechanisms of action for CCT.

Cognitive and psychological functioning in Fabry disease.

Fabry disease is an X-linked lysosomal storage disorder which can result in renal, cardiac, and cerebrovascular disease. Patients are at increased risk of stroke and neuroimaging studies note cerebrovascular pathology. This study provides a cognitive profile of a cohort of individuals with Fabry disease and investigates the impact of pain, age, renal, cardiac, and cerebrovascular functioning on cognition and psychological functioning. Seventeen Fabry patients (12 males) with ages ranging 25 to 60 years (M = 46.6+11.8), and 15 age-matched healthy controls (M = 46.2+12.7) were administered a comprehensive neuropsychological battery. Fabry males demonstrated slower speed of information processing, reduced performance on measures of executive functions (verbal generation, reasoning, problem solving, perseveration), were more likely to show clinically significant reductions, and were more likely to report symptoms of anxiety and depression. Conversely, Fabry females performed at a similar level to controls. Correlational analyses indicated a link between cognitive and clinical measures of disease severity.

A systematic review of assessment tools for adults used in traumatic brain injury research and their relationship to the ICF.

BACKGROUND AND AIMS: Good assessment is an essential component of effective patient management. Yet the sheer volume of available assessment instruments presents a barrier for the clinician or researcher to (a) be knowledgeable about suitable measures and (b) keep up-to-date with new measures that are published. In order to create a resource of currently-used measures, we conducted a systematic review of assessment tools used in the research literature on traumatic brain injury (TBI). METHODS: We used two electronic databases (Medline and PsycINFO) to identify full-length, English-language articles published between 2000 and 2012 in which outcome in adults with TBI was assessed with behavioural tests or questionnaires. RESULTS: The searches yielded 5,735 articles and after deletion of duplicates (n = 1,383) and articles not meeting selection criteria (n = 1,759), 2,593 articles were further examined. The articles contained 910 behavioural instruments, with a final set of 728 unique instruments. Each instrument was classified against the International Classification of Functioning, Disability and Health (ICF). Half of the instruments (n = 370, 50.8%) evaluated the mental functions domain of the ICF body functions component, with a substantially smaller proportion (n = 64, 8.8%) examining specific motor-sensory and other body functions. Instruments also covered domains of activities/participation (n = 109, 15.0%), environmental factors (n = 22, 3.0%) and personal factors (n = 36, 4.9%). A substantial number of scales (n = 93, 12.8%) were multidimensional across the body function domains (n = 32), as well as the functioning and disability part of the ICF (n = 60). The remaining 5% of instruments addressed concepts not covered by the ICF, including quality of life (n = 19, 2.6%) and rehabilitation process tools (such as therapeutic alliance). The 728 instruments were listed and more than 70 of the most common, spread across 20 domains, were highlighted. CONCLUSION: These data provide a comprehensive and up-to-date resource that gives the researcher or clinician a very large selection of assessment instruments covering the major areas of function pertinent to TBI.