J Head Trauma Rehabil Vol. 30, No. 5, pp. 311–323 c 2015 Wolters Kluwer Health, Inc. All rights reserved. Copyright 

Awareness Deficits in Children and Adolescents After Traumatic Brain Injury: A Systematic Review Owen Lloyd, MPsych(Clin Neuro), BSC(Hons); Tamara Ownsworth, PhD, BA(Hons); Jennifer Fleming, PhD, BOccThy(Hons); Melanie J. Zimmer-Gembeck, PhD, MS Objectives: To systematically review empirical research on awareness deficits in children and adolescents following traumatic brain injury (TBI). Methods: PsycINFO, MEDLINE, Cochrane Library, CINAHL (Cumulative Index to Nursing and Allied Health Literature), ERIC (Education Resources Information Centre), PsycBITE, and Web of Science were searched from inception to August 8, 2013, using key terms relating to awareness of deficits and brain injury in childhood/adolescence. Studies of children or adolescents with traumatic brain injury (TBI), systematic measurement of awareness of deficits, and reporting of quantitative data were included. Details of participants, methodology, and findings were summarized for each study, and methodological quality was rated. Results: Review of 12 eligible studies yielded mixed evidence concerning the presence of awareness deficits after childhood TBI. Awareness deficits were most evident both for memory and executive function impairments and for children and adolescents with severe TBI. Methodological variability, including sampling characteristics, objects of awareness, measurement issues, and approach to statistical analysis, contributed to the mixed findings. Conclusions: Further research focusing on factors contributing to awareness deficits following pediatric TBI, the course of recovery, and relation to functional outcomes is warranted. Key words: adolescents, children, self-awareness, systematic review, traumatic brain injury

A

WARENESS DEFICITS, defined as the lack of recognition of changes to one’s self and abilities,1 have a significant influence on functional outcomes and optimal recovery following traumatic brain injury (TBI) in adulthood. These deficits have been associated with lower motivation for rehabilitation,2–5 unrealistic goals,6 less frequent use of compensatory strategies,7–9 and poorer goal attainment.10 Awareness deficits reduce safety and independent functioning,11,12 resulting in an increased need for supervision and supAuthor Affiliations: School of Applied Psychology and Griffith Health Institute, Behavioural Basis of Health, Griffith University, Mt Gravatt (Mr Lloyd and Drs Ownsworth and Zimmer-Gembeck), Queensland Paediatric Rehabilitation Service, Lady Cilento Children’s Hospital, Brisbane (Mr Lloyd), University of Queensland, Brisbane (Dr Fleming), and Princess Alexandra Hospital, Brisbane (Dr Fleming), Queensland, Australia. No specific funding was used in conducting this systematic review or preparing the manuscript, which was produced in partial fulfillment of PhD requirements for the first author. Clinical Trial Registration: Nil The authors declare no conflicts of interest. Corresponding Author: Owen Lloyd, MPsych(Clin Neuro), BSC(Hons), School of Applied Psychology, Griffith University, Mt Gravatt Campus, Mt Gravatt, QLD 4122, Australia ([email protected]). DOI: 10.1097/HTR.0000000000000113

port and associated caregiver burden.12–14 Conversely, while increased awareness of deficits has been found to be related to poorer self-esteem15 and greater emotional distress, particularly in the early post–acute injury period,16–18 greater awareness of deficits has been associated with improved emotional and psychosocial outcomes in the long term.19,20 More generally, developing awareness of one’s deficits is a key aspect of postinjury adjustment and the reestablishment of a sense of identity.13,21,22 While adults’ awareness deficits following TBI have received considerable attention, with clinicians recognizing that these issues pose a main barrier to positive rehabilitation outcomes,23 there has been much less research on awareness deficits and recovery in children with TBI. A recent article on self-awareness in pediatric TBI24 cited only 9 articles that were primarily qualitative or theoretical in nature and with the aim of better conceptualizing self-awareness after pediatric TBI. However, attention toward self-awareness in pediatric TBI has increased in recent years, making this an important time to conduct a systematic review of the literature to (1) compare the findings to what is known in the adult literature, (2) review the methodological quality, and (3) direct future research. An early qualitative study identified that children (n = 10) lacked understanding of 311

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their brain injury and its consequences.25 However, this study did not specifically measure awareness of deficits. Thus, the focus of this review is on children’s awareness of their TBI-associated deficits or self-knowledge impairments. This is related to—but distinct from—online awareness, which involves the capacity to recognize and correct errors during task performance.26 The awareness deficits that are the focus of this review are generally determined by the discrepancy between patients’ self-reports of their functioning, either by interview or questionnaire, and proxy report. Alternatively, prospective and retrospective performance judgments, compared with actual performance, represent another common approach to measurement.27 Awareness deficits may vary according to the “object of awareness” or specific domain of functioning for which awareness is examined.28 DEVELOPMENTAL ISSUES Evidence suggests that a “sense of self” emerges in infancy and becomes more coherent, complex, and organized into late adolescence and early adulthood, as supported by an interaction between neurocognitive development and sociocultural factors.29,30 In particular, self-awareness proceeds from awareness of concrete, physical and behavioral domains to more abstract, internal attributes that increase in complexity and reflect trait-like characteristics.29,30 While young children are able to describe themselves, verbalizing personal attributes and action capabilities, self-descriptions are typically overly positive.29,30 From around 8 years of age, there is a notable increase in perspective-taking skills,31 which facilitates greater social comparison and awareness of one’s own functioning than of others.30 In later childhood, accuracy of self-appraisal increases,30 with children better able to recognize both positive and negative attributes and distinguish between real and ideal selves.30 More accurate self-appraisals can affect self-esteem,30 which may, in part, account for the decline in self-esteem observed in early to middle adolescence.32 Adolescents use more abstract terms to describe themselves and have a greater sense of their past, present, and future selves, thus allowing self-comparisons of abilities over time.30 However, their sense of self becomes increasingly differentiated, with certain attributes associated with particular social roles or contexts, which can produce confusion and distress over what constitutes the “real me.”30 It is usually during late adolescence that these contradictions start to be resolved and a more integrated sense of self forms.30 Given the developmental differences in accuracy of self-appraisal in typically developing children, the inclusion of normative data or age-matched controls is important to the investigation of awareness deficits following pediatric TBI.

AIMS OF THE PRESENT REVIEW The primary aim of this systematic review was to examine empirical evidence for awareness deficits following TBI in childhood and adolescence. The secondary aims were to investigate demographic and neurocognitive factors related to impaired awareness and examine the relations between awareness deficits and functional and psychosocial outcomes after pediatric TBI. METHODS Search strategy Articles were identified through systematic electronic searches of the PsycINFO, MEDLINE, Cochrane Library, ERIC (Education Resources Information Centre), CINAHL (Cumulative Index to Nursing and Allied Health Literature), Web of Science, and PsycBITE databases from inception to the end of August 2013. Key word searching (ie, searching of all fields; or title, abstract, keyword in Cochrane Library) was used for the following terms: (1) awareness or unawareness or anosognosia or anosagnosia or metacognit∗ or insight or denial or self-concept or self-perception or self-reference; OR (2) proxy or overestimat∗ or underestimat∗ or agreement or discrepancy or perspectives; AND (3) brain damag∗ or brain injur∗ or traumatic brain injur∗ or head injur∗ or brain dysfunction or TBI. Searches were limited to children and adolescents either via limits or through the additional search terms: (4) AND child∗ OR adolescen∗ OR pediatr∗ OR paediatr∗ OR teen. In databases that did not automatically allow searching of key words against MeSH terms/topics, terms were additionally mapped to MeSH/Topic headings. In PsycBITE, a specialized database for brain injury research,33 the target areas of “insight/awareness/knowledge of condition,” age group “children, adolescents,” and neurological group “TBI/head injury” were selected. Selection criteria Original, peer-reviewed articles with full abstracts were selected for review according to the following criteria: 1. Human subjects. 2. English language. 3. Awareness of deficits assessed, although did not need to be the primary focus of the study or defined by specific awareness terminology (eg, proxy agreement was a common alternative term). 4. Pediatric sample, or if sample was mixed in age, sample was stratified such that data pertaining to pediatric/adolescent subjects were separately analyzed. 5. Participants with a diagnosis of TBI. In brain injury samples with mixed cause (eg, TBI, stroke, encephalopathy), 70% or more of participants

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Awareness Deficits in Children and Adolescents After TBI sustained TBI or awareness data were stratified by injury type. 6. A standardized measure of self (child) and other ratings (eg, parent or clinician) of the child’s functioning was used, which contained the same items and subscale structure for each version. Alternatively, for performance-based measures (ie, prospective and/or retrospective judgments of task performance), there was uniform administration of test procedures. 7. Direct statistical comparison was made between child and proxy data or child predictions and actual performance (ie, level of agreement or discrepancy index). Studies were excluded if the sample comprised participants with an injury arising from a prenatal, perinatal, or early postnatal event, or a genetic/metabolic disorder, or if insufficient data were reported to assess the presence and magnitude of awareness deficits. The initial search was conducted by the first author (O.L.), based on the title and abstract, according to the inclusion and exclusion criteria. The full texts of the resulting initial set of articles were independently assessed by 2 authors (O.L. and T.O.). Any lack of agreement was discussed to reach consensus regarding article inclusion. Data extraction Details of study methodology were summarized for all articles. Methodological quality of the studies was examined using a checklist derived from the STrengthening the Reporting of OBservational studies in Epidemiology (STROBE) guidelines.34 Articles were scored 0 (does not meet) or 1 (meets) on the following 5 criteria: (1) representative recruitment; (2) longitudinal design/matched controls; (3) clear description of awareness tool, validated for TBI where appropriate; (4) reporting of means and standard deviations in text, table, or graph; (5) analysis examined and/or controlled for potential confounds. Higher scores represented stronger methodological quality. Two reviewers (O.L. and T.O.) independently appraised each study for methodological quality. Discrepancies were resolved through discussion to determine a final rating. Data synthesis Because of significant variability in participants’ age, severity of injury, time since injury (chronicity), object of awareness (ie, domain of functioning for which awareness was assessed), and assessment approaches, meta-analysis was not used to synthesize the data. Instead, findings are detailed in Table 1 and described later.

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RESULTS Description of studies The initial search yielded 4216 articles, which reduced to 2798 once duplicates were removed. A further 2762 articles were excluded on the basis of title and abstract, leaving a total of 39 articles to be screened as full texts by both reviewers. This process identified 12 articles eligible for review35–46 (see Figure 1). There was 97% agreement between 2 independent raters (O.L. and T.O.) concerning the inclusion or exclusion of the 39 studies based on review of the full text. Initial disagreement regarding eligibility of 1 study47 was resolved through discussion. Table 1 outlines the sample characteristics, design, methods, and findings of the 12 eligible studies. Quality of methodology There was substantial interrater agreement concerning the methodological quality criteria (κ = 0.661; P < .001), with disagreement resolved through discussion to yield final ratings. As shown in Table 2, 4 studies met 2 of 5 criteria,35,39,44,45 3 studies met 3 of 5 criteria,38,41,43 and 5 studies met 4 of 5 criteria.36,37,40,42,46 Five of the 12 studies used a representative sampling approach such as consecutive admissions or multisite recruitment.36,38–40,46 More rigorous designs involved the use of control samples matched on relevant characteristics such as age, gender, education, socioeconomic status, and trauma severity37,40–45 and/or longitudinal designs assessing recovery of awareness of deficits following TBI.36,40 Eleven studies35–43,45,46 provided a clear description of the approach for assessing awareness deficits to enable replication. One study44 did not contain sufficient information on how the metacognitive index was derived. Descriptive data (means and standard deviations) concerning awareness deficits were reported in 50% of studies,35,37,38,41,42,46 whereas remaining studies reported the findings of statistical analyses without descriptive data. Statistical analyses examined and/or controlled for potential covariates in 7 studies,36,37,40,42–44,46 using methods such as 2-way analysis of variance or analysis of covariance to test interactions or hierarchical regression. Evidence of awareness of deficits in children with TBI There was evidence of awareness deficits following pediatric TBI in 9 of the 12 studies.35–38,41–44,46 The evidence varied according to 4 main methodological issues, namely, the approach to assessing awareness, domains or objects of awareness, sample characteristics, and the extent to which studies examined and controlled for potential confounding variables. As summarized in Table 1, 5 studies36,41–44 found consistent evidence of awareness deficits for the domain of www.headtraumarehab.com

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167 children (5-15 y old) with mild to severe TBI, initial assessment within 1 mo postinjury

38 adolescents (13.92– 19.92 y old) with severe TBI, a mean of 9.48 mo postinjury (SD = 8 mo)

20 children (9–18 y old) with moderate to severe TBI, an average of 48 mo postinjury (SD = 36 mo) 16 children (15–18 y old) with mild to severe TBI, 13-16 y postinjury (M and SD not stated)

186 children (8–15 y old) with mild TBI, initial assessment within 3 wk of injury (M = 11.35 d, SD = 3.42 d)

Crowther et al36

Douglas37

Erikson et al38

Hajek et al40

Green et al39

21 children (9-16 y old) 1-5 y following severe TBI (M = 40.6 mo, SD = 17.9 mo)

Beardmore et al35

Sample

Study

Longitudinal, with assessments at baseline, 1, 3, and 12 mo postinjury; OI control group

Cross-sectional

Cross-sectional

Cross-sectional, typically developing control group (age-, gender-, and education-matched)

Cross-sectional (assessment prior to intervention but no reassessment of awareness deficits) Longitudinal, with assessments at baseline, 3, 6, 12, and 24 mo postinjury

Design

Characteristics and findings of included studies

TABLE 1

PCS and health behaviors; PCS Interview and Health and Behavior Inventory, self- and parent ratings

HRQOL and psychosocial function; PedsQL and Sydney Psychosocial Reintegration Scale, self- and parent ratings

HRQOL; PedsQL, self- and parent ratings

Communication; La Trobe Communication Questionnaire, self- and relative ratings

Memory functioning; metamemory judgments of performance on a word list learning task

Multiple functional domains; Knowledge Interview for Children, self- and parent ratings

Object of awareness; measure

Children reported significantly fewer problems than their parents; lower levels of awareness were correlated with higher self-esteem Children with moderate or severe TBI had less accurate prediction of their learning performance; increased severity of injury, younger age at assessment, and short duration postinjury were associated with less accurate performance predictions Adolescents with TBI perceived themselves to have significantly fewer communication difficulties than their relatives (adult family member) Parents’ report of children’s quality of life (physical and total scores) was significantly lower than children’s self-report High agreement between parents and adolescents regarding psychosocial outcomes, fair agreement regarding quality of life; however, no systematic pattern on subscales. Level of agreement higher for those with more severe TBI Self-rated symptoms were significantly higher for children than for parents, particularly for somatic symptoms; a higher agreement in the OI group than in the TBI group (continues)

Main findings

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77 children (5-15 y old) with mild or severe TBI, mean 63.12 mo postinjury (SD not stated)

30 children (8-14 y old) with severe TBI, 10-65 mo postinjury (M = 28.2 mo, SD = 16.3 mo) 30 children (8-14 y old) with severe TBI, 10-65 mo postinjury (M = 28.2 mo, SD = 16.3 mo)

38 children (5-17 y old) with mild TBI, 1 mo postinjury

98 children (11-16 y old) with mild to severe TBI, 1 mo to 1 y postinjury (M = 4.4 mo, SD = 2.95 mo)

Hanten et al42

Josman et al43

Pieper and Bear45

Wilson et al46

Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. Cross-sectional, other injury and typically developing control groups (age- and gender-matched), and retrospective ratings of preinjury functioning Cross-sectional, typically developing control group

Cross-sectional, typically developing control group (age- and gendermatched) Cross-sectional, typically developing control group (age- and gendermatched)

Cross-sectional, typically developing control group

Cross-sectional, typically developing control group (age- and SES-matched)

Design

Executive functioning; Behavior Rating Inventory of Executive Functioning, self- and parent ratings

HRQOL; PedsQL, self- and parent ratings

Memory functioning; metamemory judgments of performance on the Contextual Memory Test Categorization ability; Toglia Category Assessment (performance prediction and posttask estimate)

Memory functioning; metamemory judgments on a word list learning task Memory functioning; metamemory judgments on a word list learning task

Object of awareness; measure

Self- and parent ratings were moderately correlated; adolescents underestimated their metacognitive difficulties relative to parent reports; awareness deficits were significantly and positive related to injury severity

Children with TBI were less accurate than controls in appraising their performance at postassessment; accuracy of pretask predictions did not differ from controls Physical, psychosocial, and generic HRQOL was rated as lower by children than by parents (in all groups), although cognitive HRQOL was not

Children with TBI overestimated the number of words they could recall, but actual performance did not differ from controls Children with severe TBI overestimated their learning ability, but their actual performance did not significantly differ from those with mild TBI and controls. Children with TBI overestimated their memory performance compared with controls

Main findings

Abbreviations: HRQOL, health-related quality of life; OI, orthopedic injury; PCS, postconcussion symptom; PedsQL, Pediatric Quality of Life Inventory; SES, socioeconomic status; TBI, traumatic brain injury.

Josman et al44

9 children (8–13 y old) with severe TBI, 9-67 mo postinjury

Sample

Characteristics and findings of included studies (Continued)

Hanten et al41

Study

TABLE 1

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Figure 1. Flow diagram. TBI indicates traumatic brain injury.

TABLE 2

Quality of methodology of included studies Analysis Clear examines description and/or Reporting of of tool, Longitudinal design and/or validated for mean (SD) in controls for TBI where text, table, or potential matched Representative confounds graph appropriate controls recruitment

Study 35

Beardmore et al Crowther et al36 Douglas37 Erikson et al38 Green et al39 Hajek et al40 Hanten et al41 Hanten et al42 Josman et al43 Josman et al44 Pieper and Bear45 Wilson et al46

N Y N Y Y Y N N N N N Y

N Y Y N N Y Y Y Y Y Y N

Y Y Y Y Y Y Y Y Y N Y Y

Y N Y Y N N Y Y N N N Y

N Y Y N N Y N Y Y Y N Y

Total 2 4 4 3 2 4 3 4 3 2 2 4

Abbreviation: TBI, traumatic brain injury.

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Awareness Deficits in Children and Adolescents After TBI cognitive function, based on a similar methodology of comparing prospective (pretask) metamemory or categorization judgments and retrospective judgments (posttask) with actual task performance. Crowther et al36 found that children aged 5 to 15 years with moderate to severe TBI overestimated their performance in prospective judgments on a word list learning task compared with those with mild TBI. Hanten et al41 also found that children with severe TBI significantly overestimated their memory performance in prospective judgments on a word list learning task. Interestingly, there were no significant differences between children with TBI and controls on word list learning and recall and thus measurement of awareness deficits did not appear to be confounded by actual memory ability. Extending this study, Hanten et al42 found that children with severe TBI were significantly more likely to overestimate their ability to learn new words on a word list learning task than children with mild TBI and controls. There were no significant differences in accuracy of performance predictions between participants with mild TBI and controls. Furthermore, no significant differences were found for retrospective judgments of learning or recall and actual memory performance between the groups. The consistency of these findings, and the quality of the methodology used in particular studies36,42 (see Table 2), provides robust evidence of awareness deficits in relation to memory ability following moderate to severe pediatric TBI. In 2 related studies with the same clinical and control samples, Josman et al43,44 found that children with severe TBI overestimated their performance in prospective judgments on the Contextual Memory Test relative to matched controls.43 Also, Josman et al44 reported that children with severe TBI were significantly less accurate than controls in retrospectively appraising their performance on the Toglia Category Assessment, a dynamic measure of categorization and conceptual shift, but there were no significant differences in accuracy of their prospective performance predictions. These studies were both limited by use of a convenience sample and lack of descriptive data on the awareness indices. Also focusing on executive functioning, in a welldesigned study Wilson et al46 found that adolescents significantly underestimated their difficulties on the Metacognition Index of the Behavior Rating Inventory of Executive Functioning (BRIEF) relative to parent reports. The degree of discrepancy between ratings was significantly greater in the TBI group than in the control group. In further research examining awareness of behavioral deficits, Douglas37 found that adolescents with severe TBI rated themselves as having significantly fewer communication difficulties than reported by their parents. Interestingly, this pattern was reversed in the control group. Again, the high methodological quality

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of this study (see Table 2) increases confidence in this finding. Beardmore et al35 used the Knowledge of Injury Checklist, a measure specifically designed to assess 10 potential problem areas and awareness of deficits following pediatric TBI. A Knowledge of TBI score and 2 main awareness measures were derived on the basis of spontaneous reports from children and parents, as well as the number of checklist items endorsed by the parent and rejected by the child (discrepancy index). The Knowledge of Injury Checklist had very good interrater reliability (r = 0.96) and sound internal consistency (α = .75).35 In this study, children with severe TBI spontaneously reported significantly fewer difficulties than did their parents and endorsed significantly fewer checklist items. The most common areas of disagreement involved motor problems, behavior, attention/concentration, planning difficulties, and fatigue. While this was the only study to examine awareness of deficits across a range of TBI-related difficulties, the use of a convenience sample, absence of control group, and lack of control for potential confounds mean that it is not possible to determine whether awareness deficits were attributable to TBI or other factors. The final 4 studies examined the impact of impaired awareness using broader measures of health-related quality of life, psychosocial function, or postconcussion symptoms (PCSs).34–40 As summarized in Table 1, these studies yielded mixed results concerning evidence of awareness deficits. Erikson et al38 found that parents of children (aged 9-18 years) with moderate to severe TBI reported their children to have significantly lower health-related quality of life on the Pediatric Quality of Life Inventory (PedsQL) than child self-report. In their mild to severe TBI sample, Green et al39 found a high agreement between adolescent and parent ratings of adolescents’ psychosocial functioning on the Sydney Psychosocial Reintegration Scale but lower concordance regarding quality of life on the PedsQL. There was no particular pattern in the parent-adolescent discrepancies or significant association between ratings across domains of functioning. However, agreement with parent ratings was higher for children with severe TBI than those with mild/moderate TBI on the PedsQL. It is noteworthy that their sample was very long-term postinjury (13-16 years), and the focus was on the level of proxy agreement (intraclass coefficients) rather than awareness of deficits per se. This study was cross-sectional in nature, lacked a control group, and used intraclass correlations and thus did not control for potential confounds. In a further cross-sectional study, Pieper and Bear45 found that, similar to typically developing and non–brain-injured controls, children with mild TBI rated their quality of life significantly lower than did their parents. Similarly, in a longitudinal study, Hajek www.headtraumarehab.com

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et al40 found that children with mild TBI endorsed significantly more PCSs than their parents on both the PCS Interview and the Health and Behavior Inventory. The strong methodology of the latter study (see Table 2), and its finding that children reported significantly more PCSs than their parents at 3 weeks and 1, 3, and 12 months postinjury, suggests that children with mild TBI do not underestimate their TBI-related difficulties. Factors correlated with awareness deficits Seven studies35,36,39,40,42,43,46 examined demographic, injury-related, and/or psychological correlates of awareness deficits including age, time since injury, injury severity, and cognitive and psychological functioning. While most studies included children of varying ages,35,36,38,40–45 age at assessment was examined as a potential covariate in only 2 studies, with differing results. Crowther et al36 found that younger children were more likely to overestimate their memory performance than older children; however, there was no typically developing control group. Josman et al43 found no agerelated differences in accuracy of metamemory judgments between 2 age groups (8.5-10.11 years, 11-14.5 years), which may, in part, be due to the small sample size (n = 30). Age at injury was not considered as a potential covariate in any study. Time since injury was examined as a predictor of awareness deficits in only 3 studies.36,40,46 In a longitudinal study at 1, 3, 6, 12, and 24 months postinjury, Crowther et al36 found that children were significantly more likely to overestimate their memory performance at earlier time points postinjury. There was a cubic recovery curve for prospective judgments of performance, with accuracy of judgments increasing until 6 months postinjury, remaining stable between 6 and 12 months, and then increasing again between 12 and 24 months. For retrospective judgments of performance, there was a linear increase in accuracy over time for all groups. However, the authors did not control for potential practice effects on the memory task. In their longitudinal study comparing child and parent ratings of PCSs at 3 weeks and 1, 3, and 12 months postinjury, Hajek et al40 reported a significant rater by time interaction on the PCS Interview. This finding indicates that the discrepancy between child and parent ratings actually increased with time postinjury for their mild TBI sample. Finally, Wilson et al46 found no significant association between time since injury and awareness of executive impairments in adolescents with mild to severe TBI who were between 1 and 12 months postinjury. With regard to injury severity, Wilson et al46 found a significant positive association between the discrepancy index for parent and adolescent ratings of executive

functioning and duration of coma. Crowther et al36 also found that more severe TBI was associated with an increased tendency to overestimate memory abilities, particularly for prospective judgments. Similarly, Hanten et al42 found that children with severe TBI were more likely to overestimate their learning ability than those with mild TBI whereas actual memory performance did not differ between these groups. In contrast, Beardmore et al35 found no significant association between injury severity and awareness of deficits, although their study only included children with severe TBI and sample size was small (n = 20). Furthermore, Green et al39 found that level of agreement between adolescent and parent ratings of quality of life was actually greater for those with more severe TBI than for those with mild TBI. The 2 studies investigating cognitive correlates found no significant associations between awareness deficits and memory functioning on the Rivermead Behavioural Memory Test (Beardmore et al35 ) or executive functioning on the Wisconsin Card Sorting Test (Wilson et al46 ). Only 1 study35 examined the relation between awareness deficits and psychological outcomes, reporting that awareness deficits were significantly and positively related to self-esteem. DISCUSSION In this systematic review, we examined empirical evidence for awareness deficits following TBI in childhood and adolescence. Such evidence was found in 9 of the 12 studies. The most consistent finding was that children with moderate to severe TBI display impaired awareness of their deficits in memory, executive functioning, and communication skills.36,39,41–44,46 Awareness deficits were consistently reported for studies using performance prediction methodology (ie, metamemory or metacognitive judgments).36,41–44 These studies also examined differences in actual level of functioning (eg, memory performance), which provides greater confidence that the findings reflect metacognitive ability rather than being attributable to difference in cognitive functioning (eg, impaired memory). Awareness deficits were also evident in 2 studies comparing adolescent and parent ratings of behavioral functioning (ie, executive and communication skills).37,46 Both studies used a control sample to help distinguish between the effects of TBI and developmental differences in self-awareness. The study by Beardmore et al35 provided evidence of generalized awareness deficits across functional domains for children with severe TBI. However, because of the absence of a typically developing control group in this study, it is not possible to attribute the differences between child and parent ratings solely to TBI. These findings are somewhat in keeping with the adult literature, in which awareness deficits have been found to be

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Awareness Deficits in Children and Adolescents After TBI greater for cognitive, behavioral, and socioemotional aspects of functioning than for sensory/motor and physical functioning or basic self-care competencies.5,48–54 However, further research examining awareness of deficits across specific domains of functioning after pediatric TBI is warranted. A further noteworthy finding from 2 studies40,45 was that children with mild TBI rated their functioning as poorer (ie, lower quality of life45 and more PCSs40 ) than their parents, which was similar to the pattern for typically developing controls. Conversely, Erikson et al38 found that children with moderate to severe TBI rated their quality of life as better than did their parents; however, their study did not use a control group. A possible explanation for these mixed findings is that quality-oflife ratings are particularly subjective and discrepancies between raters are likely to be influenced by various factors. For example, level of agreement between parent and child ratings may vary according to children’s awareness of their deficits, parents’ insight into their child’s subjective well-being, parents’ own psychological well-being, or a combination of these factors.38 Therefore, although these studies were considered eligible for review because their methodology was consistent with approaches used to measure awareness, some caution is needed when inferring the presence of awareness deficits from qualityof-life measures. Furthermore, the findings suggest that level of agreement between child and parent reports of quality of life may differ in mild TBI and moderate to severe TBI samples. Following mild TBI, children may be less likely to experience awareness deficits or, similar to some findings in the adult literature,18,19,54,55 some children with mild TBI may be “hyperaware” of their symptoms. These issues highlight the need for further research on factors influencing subject-proxy agreement to provide clearer guidelines on the use of proxy reports in clinical practice. A further aim of this review was to investigate factors related to awareness of deficits after pediatric TBI. Because of inconsistent findings for age at assessment36,43 and time since injury,36,40,46 and a lack of research on age at injury, no conclusions can be drawn regarding the influence of age, chronicity, and their interaction with injury severity as predictors of awareness deficits. Synergistic effects of age, chronicity, and injury severity have been found for various outcomes of pediatric TBI, including cognitive functioning.56,57 Literature on typically developing children indicates that accuracy of selfappraisal increases with age (ie, between early and late childhood) and is influenced by cognitive maturation and sociocultural factors.29,30 The impact of pediatric TBI on awareness of deficits at different developmental stages remains a priority area for future research. In the adult literature, awareness of deficits is generally found to improve with increased time since injury.1,6,51 The

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study by Crowther et al36 indicated a “cubic” recovery curve for awareness deficits over the first 2 years postinjury, suggesting that the course of recovery may differ for children compared with adults. This highlights the need for more long-term monitoring of the emergence of awareness and potential psychological impact. Further research on the longitudinal course of recovery of awareness deficits following pediatric TBI is needed. In terms of neurological factors, there was evidence for a relation between severity of injury and awareness deficits, with 3 studies with strong methodology reporting that children or adolescents with more severe TBI displayed greater awareness deficits.36,42,46 This finding is consistent with some studies in the adult TBI literature.11,15,17 Furthermore, the 2 studies in this review that included only participants with mild TBI samples did not find evidence of impaired awareness.40,45 No significant association was found between cognitive functioning and awareness deficits, which may, in part, be due to the influence of severity of injury in these studies.35,46 Only one study examined psychological correlates of awareness deficits, with a greater awareness of deficits associated with lower self-esteem.35 This finding parallels adult TBI research, in which increased awareness of deficits has also been found to be related to poorer self-esteem15 and greater emotional distress, particularly in the early post–acute injury period.16–18 However, many authors advocate the need for individuals to develop awareness of their postinjury changes to promote acceptance and improve selfregulation skills in order to increase independence and adaptive functioning.2,22,58,59 To guide interventions for pediatric TBI, further research is needed to understand the implications of awareness deficits for self-esteem and the relation to long-term psychosocial outcomes after pediatric TBI. Table 3 compares the findings from the pediatric literature, as discussed in this systematic review, with findings from the adult literature. (Note: The adult literature has not been systematically reviewed.) As highlighted, there is a need for further cross-sectional and longitudinal studies to investigate developmental factors related to awareness deficits in pediatric TBI, including the impact of both age at injury and age at assessment. Studies should include age-matched controls because of normative developmental changes in self-awareness. A further gap in the literature relates to correlates of impaired awareness after pediatric TBI such as severity of injury, time since injury, and cognitive functioning (eg, executive functioning) that have been more extensively investigated in adults. There is a significant need to examine the relations between awareness of deficits and functional and psychosocial outcomes to determine the clinical relevance of awareness deficits. While a number www.headtraumarehab.com

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Comparison of findings on awareness of deficits in the adult and pediatric TBI literature TABLE 3

Adult literature Evidence for presence of awareness deficits

Awareness deficits found in adults following TBI of mixed severity1–20

Common domains of deficit identified

Awareness of deficits is typically poorer for cognitive, behavioral, and socioemotional functioning than for sensory/motor and physical functioning or basic self-care competencies5,48–54

Correlates of awareness deficits Severity of injury

Cognitive correlates

Time since injury

Relationship with outcomes

Mixed findings, with some studies finding that increased severity of injury was associated with reduced awareness of deficits11,12,15,17,18,51,53,55,60–65 but no significant associations in other studies14,48,66–71 Mixed evidence concerning the relationship between awareness of deficits and memory and general cognitive functioning11,17 ; support for association between awareness deficits and executive functioning in some studies, particularly for error self-regulation8,12,14,48,60,64,68,72–75 but not for other aspects55,60,67–70,76 Awareness of deficits generally found to improve with increased time since injury1,6,16,17,48,51,52,58

Awareness deficits associated with less strategy use,7–9 poorer goal attainment,10 reduced safety and independent functioning,11,12 increased supervision and support and caregiver burden12–14 ; awareness deficits associated with poorer self-esteem15 and emotional distress in the short term16,17,18 but with improved emotional and psychosocial outcomes in the longer term.19,20

Pediatric findings (based on the present review) Awareness deficits were most common for children with moderate to severe TBI35,36,40–43,45 Awareness deficits were found concerning memory, executive functioning, and communication skills35,36,40–43,45 ; lack of research on other areas of functioning Preliminary data support that awareness deficits are more common in children with severe TBI35,41,45 Lack of research; no significant associations evident between awareness deficits and memory functioning35 or executive functioning46

Lack of research; only examined in 3 studies36,40,46 with mixed findings; improvement in awareness of deficits over time found in 1 longitudinal study46 Lack of research; increased awareness associated with lower self-esteem35

Abbreviation: TBI, traumatic brain injury.

of commonly used measures (eg, BRIEF) have parallel adolescent self-rating and parent rating forms, and thus can be used as an index of awareness, at present, only one measure is specifically designed to assess awareness following pediatric TBI, the Knowledge of Injury Checklist.30 The development and psychometric evaluation of pediatric domain-specific and global awareness measures will significantly assist future

research in the field. Current adult measures include items that are not suitable for children. The Awareness Questionnaire,53 in particular, also focuses on comparison of current performance with preinjury performance, which is not suitable for children injured at a young age. Through this review, we found consistent evidence of awareness deficits for children with moderate to

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Awareness Deficits in Children and Adolescents After TBI severe TBI in the domains of cognitive and behavioral functioning. It is important to acknowledge that the primary focus of several studies included herein was on agreement between parent and child ratings, typically for the purpose of determining the appropriateness of obtaining proxy ratings of quality of life. As previously noted, caution is needed when inferring the presence of awareness deficits in these studies. The methodological differences between studies precluded meta-analysis at

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this point. As the first systematic review on awareness deficits of children and adolescents with TBI, this article advances the field by highlighting that children with moderate to severe TBI may experience awareness deficits concerning their cognitive and behavioral impairments. Future pediatric TBI research is essential to better understand factors related to awareness deficits, course of recovery, and relations to psychosocial outcomes.

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