J Head Trauma Rehabil Vol. 30, No. 2, pp. E43–E54 c 2015 Wolters Kluwer Health, Inc. All rights reserved. Copyright
Factors Influencing Self-Awareness Following Traumatic Brain Injury Cally Richardson, BPsych (Hons); Adam McKay, PhD, MPsych (Clin Neuropsych); Jennie L. Ponsford, PhD, MA (Clin Neuropsych), BA (Hons) Objective: To examine self-awareness and injury-related, emotional and demographic factors across acute/subacute (3-12 months), medium-term (24–60 months), and long-term (120-240 months) time periods after traumatic brain injury (TBI), because unawareness of injury-related changes can affect engagement in rehabilitation and functional outcomes. Participants: A total of 168 individuals with mild to severe TBI and 105 of their close others. Main Outcomes Measures: Awareness Questionnaire (AQ) and Hospital Anxiety and Depression Scale. Design: Crosssectional study. Results: There were no significant differences in awareness as a function of time postinjury, except for the AQ motor/sensory domain wherein individuals with TBI at longer time periods displayed increased awareness of deficits than those at earlier time periods. Greater patient-other AQ discrepancy scores (interpreted as lower patient awareness) were associated with longer posttraumatic amnesia duration in the individual with TBI and also with increased self-reported depressive symptoms in the close others. Conversely, smaller AQ discrepancy scores (interpreted as better awareness) were associated with increased self-reported depressive symptoms by the individuals with TBI. Conclusion: This study highlights the limitations of using discrepancy scores to measure awareness, as ratings of injury-related changes are influenced by the mood of the individual with TBI and the close other, as well as by injury severity. Key words: close other, depression, injury severity, self-awareness, traumatic brain injury
T
RAUMATIC BRAIN INJURY (TBI) can lead to diverse long-term physical, cognitive, behavioral, and emotional changes.1 A common consequence of moderate to severe TBI is impaired self-awareness,2–6 characterized by inability to recognize difficulties caused by neurological damage.7 Reduced awareness can be global or limited to specific areas, such as cognitive, physical, behavioral, or emotional function. Reduced self-awareness may contribute to unrealistic expectations and goals,8 poor compliance and outcomes in rehabilitation,9 or a reduced capacity to adopt compensatory strategies.10,11 Impaired awareness may also lead to difficulties in achieving independent living,4,12–14 troubled relationships, and increased emotional distress in family members.2 Awareness is typically measured by comparing individuals’ with TBI self-reports of function with reports Author Affiliations: School of Psychology and Psychiatry, Monash University (Ms Richardson, Dr Ponsford, and Dr McKay); Monash-Epworth Rehabilitation Research Centre, Epworth Hospital (Ms Richardson and Dr Ponsford); and Epworth Rehabilitation (Dr McKay), Melbourne, Australia. J.L.P. has received royalties from Psychology Press and Guilford Press for textbooks on traumatic brain injury. The authors declare no conflicts of interest. Corresponding Author: Cally Richardson, BPsych (Hons), School of Psychology and Psychiatry, Monash University, Wellington Road, Clayton, Melbourne 3800, Australia (
[email protected]). DOI: 10.1097/HTR.0000000000000048
of other more “objective” persons such as a clinician or relative. Discrepancy scores are calculated by subtracting collateral ratings from the self-ratings of the individual with TBI to provide an index of awareness.15 While this approach can be applied to any measure, specific scales have been designed for assessing awareness, for example, the Patient Competency Rating Scale16 and the Awareness Questionnaire (AQ).17 While use of discrepancy scores between self and collateral ratings is common, this technique is based on the assumption that close others’ and clinicians’ ratings are more accurate than those of the individual with TBI. However, both clinicians’ and family members’ ratings may themselves be subject to biases, which may render their assessments at least partially inaccurate. Clinicians have knowledge and prior experience of outcomes associated with TBI, which are likely to influence their rating of function. On the contrary, they have limited direct knowledge of the particular patient’s preinjury abilities.4,15,18 While family members knew the injured person before injury, they generally do not have much knowledge of TBI or its consequences, and other factors such as emotional status and stress and amount of time spent with the injured person may affect their ratings.18,19,20 Furthermore, changes in collateral ratings over time may be altered by improved close other-rated function over time, which reduces the magnitude of discrepancy, even if the ratings of the individual with TBI have not changed.15,21,22 In acknowledging the potential E43
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limitations of using discrepancy scores to measure awareness, Hart et al15,21 also examined the ratings of the person with TBI and close others that are used to form the discrepancy score. Using the AQ, Hart et al21 reported increased strength in the correlation between self and close other rating from baseline to follow-up, most pronounced for the behavioral/affective domains followed by the cognitive sphere, indicating an improvement in awareness in these areas over time. There was no significant change in correlations for the motor/ sensory domain as these deficits were the most readily acknowledged by the individual with TBI at baseline. The strength of the correlations at follow-up compared with baseline was moderate at best (r’s range from 0.34 to 0.46). Nevertheless, these findings provide some justification for investigating both discrepancy scores and self and close other ratings when examining awareness. CHANGES IN SELF-AWARENESS It is generally assumed and observed clinically that self-awareness of individuals with TBI differs across various functions, with awareness of physical functions generally better than that of cognitive and behavioral changes. This pattern has typically been demonstrated in postacute settings, wherein close others report more behavioral and cognitive problems than the individual with TBI.4,11,15,21,23 As reduced awareness may thwart rehabilitative efforts, some investigations have focused on its development to determine optimal time points for interventions.11,21,22,24,25 There is general consensus that awareness improves over time from baseline assessments during inpatient rehabilitation to follow-up assessments 1 to 2 years after TBI.11,22,24,26,27 There have, however, been relatively few studies examining awareness in the longer term. Draper and Ponsford28 compared self and relatives’ ratings on the Neurobehavioral Functioning Inventory29 10 years after TBI. They found that participants with TBI reported more problems in most domains than did relatives, which could be interpreted as reflecting increased awareness of deficits. Interestingly, the self-report ratings of TBI participants were strongly associated with their emotional state. The high frequency of mood disorders after TBI30–32 suggests that awareness ratings may be influenced by the rater’s emotional state. This may also apply to the ratings of family members providing collateral ratings, as emotional disturbance is also common in family members after a loved one’s TBI.33,34 PREDICTORS OF SELF-AWARENESS While there is substantial evidence suggesting that individuals with TBI are not accurate raters of their own cognitive and behavioral functions early after injury, it is less clear whose perspective should be taken and what
factors may influence ratings of function over the longer term. There is a lack of consensus about the relations among injury-related factors and awareness. Some studies, using AQ discrepancy scores and other measures to assess awareness,21,26,35–39 have found injury severity and time after injury to be significant predictors of awareness whereas other studies have not.3,40–45 There are also contrasting findings regarding the relation between emotional state and awareness. Some research has shown increased depression in the individual with TBI to be associated with increased awareness on the AQ36,46 and other awareness measures.13,27,37,38,47 However, others have not found a relation between mood in the individual with TBI and awareness.41,48,49 No studies have explicitly examined the influence of anxiety or depression symptoms in the close other on awareness ratings. The influence of demographic factors on selfawareness has not been investigated in depth. Existing findings are primarily exploratory, making it difficult to form a cohesive argument for including these factors as potential predictors. One study found older age to be associated with increased awareness.6 No study to date has found gender to be related to awareness.21,41 Being from a non-English-speaking background or different ethnicity has been associated with less comprehensive understanding of TBI,50 but racial/ethnic background did not emerge as a significant predictor of awareness in the study by Hart et al.21 There is a need for further research to elucidate those demographic, injury-related, or emotional factors that may influence the perspectives of the injured person and close others at various time points after injury. This study’s first aim was to examine awareness across acute/subacute (3–12 months), medium-term (24–60 months), and long-term (120–240 months) time periods after injury. It was hypothesized that awareness in general and awareness for specific domains of function (eg, cognitive, behavioral/affective and motor/sensory) would be higher with increasing time after injury, that is, discrepancy scores would be greater (positive value) in the acute phase and lower (negative value) in the long term. On the basis of past studies, we expected a greater increase in reported problems by the individual with TBI over time than in the close other. The second aim of the study was to determine which injury-related (injury severity and time after injury), emotional (depression and anxiety symptoms in self and close other), and demographic factors (ie, age, gender, education, and non-English speaking background [NESB]) were associated with awareness. It was hypothesized that greater awareness would be associated with longer time after injury and decreased injury severity. Furthermore, we expected awareness to be positively associated with depression symptoms both in individuals
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Self-Awareness Following TBI
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with TBI and close others. Because of lack of previous research, our examination of the relations among awareness of deficits and demographic factors including age, education, gender, and NESB was exploratory. METHOD Participants This study was approved by the Epworth Hospital and Monash University ethics committees. All participants gave informed consent. Between December 2011 and December 2012, 435 individuals with TBI were approached to participate in the study by completing questionnaires, along with their close others. Eligibility criteria included the following: (a) age 16 years or older (those younger than 18 years required guardian’s and their own consent); (b) mild to severe TBI according to posttraumatic amnesia (PTA) duration or worst Glasgow Coma Scale (GCS)51,52 score; (c) sufficient English skills to complete questionnaires; (d) no known past or current neurological conditions (eg, epilepsy, dementia); and (e) no current psychosis. Figure 1 outlines the recruitment processes, which resulted in the final sample of 168 cases, all of whom had received rehabilitation at Epworth Hospital, Melbourne, within the context of a nonfault statewide injury compensation scheme administered by the Transport Accident Commission. Injury severity was established using PTA criteria outlined by Corrigan et al53 (0-1 day = mild; >1 to ≤7 days = moderate; >7 days = severe); the majority of participants were classed as severe (72%), followed by moderate (16.7%) and then mild (11.3%). Motor vehicle accidents (car and motorbike) accounted for the largest proportion of injuries (66.7%), followed by pedestrians versus motor vehicles (16.1%), falls (8.3%), cyclist versus motor vehicles (6.5%), and other (2.4% all classed as work related). Table 1 summarizes the demographic and injury characteristics of participants. Independent t tests comparing included and nonincluded participants revealed that the groups differed only on age at time of completing questionnaires (M = 43.5 and 39.7 years, respectively) and years of education (M = 12.1 and 11.3, respectively). There were no differences between included and nonincluded participants on all other demographic and injury-related variables (P > .05). Measures Awareness Questionnaire The AQ17 is a 17-item self-report measure that compares the current function of individuals with TBI against premorbid abilities. Items are rated using a 5-point Likert scale ranging from 1 (much worse) to 5 (much better), with a score of 3 indicating function the
Figure 1. Recruitment flow chart outlining processes that resulted in final sample.
same as before injury. Total scores range between 17 and 85. Collateral ratings were obtained from relatives using a modified version of the AQ. A measure of awareness was obtained by subtracting close others’ ratings from self-ratings of individuals with TBI to create a discrepancy score. Positive discrepancy scores indicate less reporting of symptoms by the individual with TBI compared with the collateral ratings, assumed to be indicative of impaired awareness. Negative discrepancy www.headtraumarehab.com
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Demographics and injury characteristics for TBI participants and close others included in analysesa TABLE 1
TBI
N 168 Age, y 43.78 (17.15) Gender (male) 112 (66.7%) Education, y 12.14 (2.52) NESB (no) 153 (91.1%) PTA, d 21.81 (25.8) GCS (worst 8.71 (4.18) score) Time postinjury, d 53.56 (64.63) HADS depression 6.18 (4.75) scores Relationship to TBI participant Parent ... Spouse ... Sibling ... Child ... Friend ...
Close other 105 47.39 (14.53) 24 (22%) ... ... ... ... ... 4.05 (3.76)
37 (34%) 45 (41.3%) 6 (5.5%) 12 (11%) 9 (8.2%)
Abbreviations: GCS, Glasgow Coma Scale; HADS, Hospital Anxiety and Depression Scale; NESB, non-English speaking background; PTA, posttraumatic amnesia. a Values represent mean (and standard deviation) or number (and percentage).
scores indicate greater reporting of impairments by the individual with TBI than by the close other, which may suggest greater awareness and/or hypervigilance of deficits. Mean AQ total scores and domain-specific scores for the individuals with TBI and close others were calculated using items shown to load on each domain.17 Scores ranged from 1 to 5, with higher scores indicating better function than preinjury status. Factor analysis has shown the AQ to comprise 3 factors: cognitive, behavioral/affective, and motor/sensory.17 The AQ has good internal consistency and has been validated in TBI samples.4,15,17,18,54 Hospital Anxiety and Depression Scale The Hospital Anxiety and Depression Scale (HADS)55 is a 14-item rating scale that assesses the severity of anxiety and depression symptoms in the previous week. Items are rated on a 4-point scale (0-3). Scores for both the anxiety and depression subscales range between 0 and 21 (0-7 = normal, 8-10 = mild, 11-14 = moderate, and 15-21 = severe). It is relatively free of somatic items, which may co-occur with TBI and complicate interpretation in terms of emotional state.55 The HADS has been shown to have high internal consistency56 and has been widely used in the TBI population.57,58 Demographic and injury-related information was obtained from participants’ medical records with their
consent, including age, gender, education, non-Englishspeaking background, and date of accident. Injury severity variables utilized were coma depth as indicated by lowest preintubation GCS51,52 score recorded in the first 24 hours after TBI and duration of PTA in days, as determined prospectively using the Westmead PTA Scale.59 Procedure Participants were routinely invited to attend a followup clinic to see their consulting physician at 3, 6, 12, 24, 36, 60, 120, or 240 months after their injury as part of a longitudinal outcome study. Over a period of 1 year, while attending the clinic, participants and their close others were invited to complete a brief interview including the AQ and HADS (more than 90% were seen in person). If the individual with TBI or their close other could not be seen directly, they were contacted over the phone to complete the questionnaires. In the small number of cases where this was unsuccessful, we relied on the completion of the questionnaires via mail. To be included in analyses, no more than 2 items could be missing from self or close other ratings on the AQ. There were 2 cases in which 4 items on the back page were left blank. However, because each item corresponded to a different domain, missing values were computed for these using regression imputations. Data preparation and analyses Statistical analyses were performed using SPSS 20.0 for Windows (SPSS Inc, Chicago, Illinois). Missing data for AQ self and close other ratings, PTA, GCS, and years of education ( .05). Relations between time and awareness domains—AQ self and close other scores To unpack the effects on AQ discrepancy scores, separate ANCOVAs were used to explore the effects of time on the self and close other AQ ratings, which make up the discrepancy scores. As in the discrepancy score analysis, the only statistically significant effect of time since injury was in the motor/sensory domain, but this effect was limited to close other AQ scores (F2,164 = 3.98, P = .021, ηρ 2 = 0.46); there was no effect of time on self AQ motor/sensory scores. Post hoc comparisons showed that close other AQ scores increased with time, such that close others reported better motor/ sensory function in the 120- to 240-month group (M = 2.39, SD = 0.57) relative to the 3- to 12-month group (M = 2.26, SD = 0.54, P = .03; see Figure 2). All other models examining the effect of time on AQ self and close other scores were nonsignificant (P ’s > .05). Predictors of awareness: AQ discrepancy scores As time after injury was not shown to be a significant predictor of awareness when analyzed as 3 separate time periods in the aforementioned ANCOVAs, it was entered as a continuous variable in regression analyses. Regressions investigating predictors of AQ discrepancy scores revealed significant overall models for the total score as well as for each domain score (see Table 2). The same 3 predictors emerged for the analysis of the AQ total, cognitive, and behavioral/affective discrepancy scores: HADS depression scores in the close others, HADS depression ratings in the individual with TBI, and PTA duration (Table 2). These effects showed that poorer awareness (ie, positive discrepancy scores) in the individual with TBI was associated with higher HADS depression ratings in the close others and longer PTA duration. Conversely, increased awareness (ie, negative discrepancy scores) was associated with increased depression ratings in the individuals with TBI. Similarly, HADS depression ratings in close others, PTA duration, and time after injury emerged as significant predictors for the AQ motor/sensory discrepancy score; however, HADS depression rating in the individual with TBI was not a significant predictor (Table 2). For this motor/sensory domain, poorer awareness was associated with higher HADS depression ratings in close others and longer PTA duration. Increased awareness (ie, negative discrepancy score) was associated with longer time after injury consistent with the ANCOVA analyses reported earlier. www.headtraumarehab.com
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Figure 2. Awareness Questionnaire self and close other ratings at 3-12, 24-60, and 120-240 months postinjury. Higher scores indicate greater level of current total, cognitive, behavioral/affective, or motor/sensory function. Error bars represent standard error.
Predictors of awareness: AQ self and close other scores The results for regression analyses involving AQ self and close other scores are displayed in Tables 3 and 4. For the AQ self scores, regression analyses found that HADS depression rating of the individual with TBI was a significant predictor for the total, cognitive, behavioral/ affective, and motor/sensory scores (see Table 3). For all AQ domains, higher reporting of deficits by the individual with TBI was associated with higher levels of self-reported depressive symptoms. Age at time of assessment emerged as a predictor of the AQ selfmotor/sensory mean score (Table 3), with older age being associated with increased reporting of current motor/sensory deficits compared with preinjury status. For the AQ close other scores (see Table 4), the same predictors were observed for regressions involving the total, cognitive, and behavioral/affective domains: HADS
depression ratings by close others, HADS depression ratings by individuals with TBI, and PTA duration. For these AQ domains, higher reporting of deficits by close others was associated with (1) higher levels of depressive symptoms in close others, (2) higher levels of depressive symptoms in TBI individuals, and (3) longer PTA durations. A slightly different pattern was observed in motor/sensory domain, with higher reporting of deficits by close others associated with (1) higher levels of HADS depressive ratings in individuals with TBI, (2) longer PTA duration, and (3) older age. DISCUSSION The first aim of this study was to examine awareness as measured by self versus close other discrepancy scores on the AQ from acute/subacute phases (eg, 3 months postinjury) up to as long as 20 years. It was expected that overall and domain-specific awareness
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0.01 0.05 − 0.03 − 0.00
B
0.00 0.01 0.01 0.00 0.27 4.44b
SE B
B 0.01 0.05 − 0.03 − 0.00
β .30b .42b − .27b − .13 0.00 0.01 0.01 0.00 0.23 3.60b
SE B .24c .37b −.25c − .12
β
AQ cognitive discrepancy score
0.01 0.07 − 0.04 − 0.00
B 0.00 0.02 0.01 0.00 0.24 3.86b
SE B 0.01 0.03 − 0.01 − 0.00
B 0.00 0.01 0.01 0.00 0.17 2.45c
SE B
β .37b .22b − .15 − .22b
AQ motor/sensory discrepancy score
SE B
0.01 0.00 0.54 14.11b
B
− 0.09 − 0.00 b
− .73 − .05
β
AQ self total mean score
SE B 0.01 0.00 0.46 10.43b
B − 0.09 − 0.00
b
− .67 .00
β
AQ self cognitive mean score
− 0.10 − 0.00
B
0.01 0.00 0.50 12.16b
SE B
b
− .70 − .02
β
AQ self behavioral/affective mean score
Abbreviations: HADS-D, Hospital Anxiety and Depression Scale (Depression scale only); PTA, posttraumatic amnesia. a Self = TBI participants. b P < .01. c P < .05.
HADS-D self Age R2 F
Variable
TABLE 3
− 0.06 − 0.01
B
0.01 0.00 0.31 5.44b
SE B
− .52b − .19c
β
AQ self motor/sensory mean score
Summary of multiple regression analysis for variables predicting AQ self total, cognitive, behavioral/affective, and motor/sensory mean scores (N = 105)a
.24c .41b − .27b − .08
β
AQ behavioral/affective discrepancy score
Abbreviations: CO, close other; HADS-D, Hospital Anxiety and Depression Scale (Depression scale only); PTA, posttraumatic amnesia. a Self = TBI participants. b P < .01. c P < .05.
PTA HADS-D CO HADS-D self Time postinjury R2 F
Variable
AQ total discrepancy score
Summary of multiple regression analysis for variables predicting AQ total, cognitive, behavioral/affective, and motor/sensory discrepancy scores (N = 105)a
TABLE 2
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− .43b − .37b − .16 − .24b 0.00 0.01 0.01 0.00 0.40 7.91b Abbreviations: CO, close other; HADS-D, Hospital Anxiety and Depression Scale (Depression scale only); PTA, posttraumatic amnesia. a Self = TBI participants. b P < .01.
− 0.01 − 0.04 − 0.02 − 0.01 − .27b − .41b − .39b .00 0.00 0.01 0.02 0.00 0.49 11.41b − 0.01 − 0.16 − 0.07 − 0.00 − .30b − .47b − .28b − .01 0.00 0.01 0.01 0.00 0.49 11.54b − 0.01 − 0.07 − 0.05 0.00 0.00 0.01 0.01 0.00 0.55 14.59b PTA HADS-D selfa HADS-D CO Age R2 F
− 0.01 − 0.06 − 0.05 − 0.00
− .34b − .48b − .33b − .05
β
SE B B β
SE B B β
SE B B β
SE B
AQ CO behavioral/affective mean score AQ CO cognitive mean score AQ CO total mean score
B Variable
TABLE 4
AQ CO motor/sensory mean score
JOURNAL OF HEAD TRAUMA REHABILITATION/MARCH–APRIL 2015
Summary of multiple regression analysis for variables predicting AQ close other total, cognitive, behavioral/affective and motor/sensory mean scores (N = 105)
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would improve over time. Contrary to previous findings11,21,22,24,26,27 and to our hypothesis, there was limited evidence that levels of awareness increased with greater time after injury after controlling for the differences in injury severity across time groups. With the exception of the motor/sensory domain, there were no significant between-group differences in overall, cognitive, or behavioral/affective awareness according to time-post injury (eg, 3-12, 24-60, or 120-240 months). One explanation for this is that most previous studies have examined changes in awareness at earlier stages of recovery, typically up to 1 to 2 years after injury, whereas the current study examined longer-term time periods after TBI (ie, up to 20 years). It is possible that the greatest increase in awareness occurs in the early weeks and months after injury, as the injured individual moves from inpatient care back to the community and is confronted every day with the impacts of his/her injuries. It may also be that caregivers, family, and friends take a more active role in providing feedback about changes to the individual with TBI in these initial stages in more familiar surrounds than those of hospital settings. Thus, the individual with TBI may more readily acknowledge these changes as they reintegrate into their lives in the first year after injury. At longer time periods, changes may be more subtle and compensatory strategies may mask the degree of impairment that was likely to have been more pronounced early on. In the longer-term group (120–240 months), individuals with TBI reported more motor/sensory deficits than their close others, compared with the acute/subacute group (3-12 months), suggesting changes in awareness level across time groups for this domain. The pattern of results for the discrepancy analysis indicated that individuals with TBI in the longer-term group were reporting more motor/sensory problems than their close others. Separate analyses of the self and close other AQ scores showed that the effect of time on discrepancy scores was due to the close other scores changing with time, while scores for persons with TBI were stable across the time groups. This pattern is the reverse of what we had hypothesized—that is, that ratings of function by individuals with TBI would increase more substantially than those of close others over time. Nonetheless, this finding is consistent with research by Newman et al,22 wherein patient and clinician ratings converged between rehabilitation admission and discharge; however, this was due solely to improvement in clinician ratings as patient self-ratings remained static. These findings, along with those of the current study, demonstrate a limitation in use of discrepancy scores, as they do not indicate whose ratings are changing over time (ie, self vs close other). The current study found that close others reported better motor/sensory function in the longerterm group (120-240 months) than acute/subacute (3-12
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Self-Awareness Following TBI months) and medium (24-60 months) time groups. If we take the close other report as being more objective than that of the individual with TBI, this finding may reflect a real improvement in motor/sensory function many years after injury, and that individuals with TBI are less aware of this improvement. Conversely, there may be improvement in awareness of individuals with TBI in more subtle gradients over time, but this may not have been detected because of the cross-sectional design adopted in the current study. This possibility, however, would require further investigation. Our second aim was to determine any demographic, injury-related and emotional factors predictive of reduced awareness. Analysis of the AQ discrepancy scores revealed a consistent pattern of predictors for awareness of cognitive and behavioral/affective domains as well as overall awareness (ie, AQ total). Consistent with previous investigations,21,26,36 longer PTA duration was associated with poorer awareness in the individual with TBI. This supports the contention that individuals with more severe injuries (in terms of PTA duration) have more significant cognitive impairments, leading to poorer awareness of injury-related changes. Many previous studies have focussed on awareness in the acute and subacute stages; the current study’s findings suggest that this relation between injury severity and awareness is robust even at longer time points after injury. In addition to injury severity, awareness of cognitive, behavioral/affective, and overall deficits was predicted by levels of depressive symptoms both in the individual with TBI and in the close other. With regard to depression levels in those with TBI, those with more depressive symptoms had higher levels of awareness. The finding of a relation between awareness and depression scores in the individual with TBI is consistent with other studies showing a relation between awareness ratings and mood, namely that as awareness of changes improves the potential for mood disturbances increases.36,46 The direction of the relation is also consistent with the view that higher levels of depression may lead to greater awareness or hypervigilance of symptoms.13,27,36,38,47,64 The cross-sectional nature of this research precludes an understanding of the causal nature of the relation between awareness and depression in the individual with TBI. In terms of practical implications, rehabilitation efforts aimed at increasing awareness will need to consider the potential exacerbation of depressive symptoms in response to this awareness. A novel finding in this study was that depression in close others predicted close other but not self-ratings of current function, such that close others with higher levels of depression reported the individual with TBI as having more deficits. This highlights the need to take the emotional state of the close other into consideration when using discrepancy scores as a measure of aware-
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ness. Given the high rates of depressive symptoms in close others of people with TBI, this finding also raises questions about the ability of close others to provide an “objective” rating of functioning in the person with TBI. Demographic factors such as gender, years of education, and NESB were not shown to be significant predictors of awareness in this study; this is consistent with findings by Hart et al.21 The individuals with TBI in this study had access to comprehensive rehabilitation, which included use of interpreters and social work services to facilitate understanding of the injury, and this may have influenced this finding. The relations among cultural background, beliefs about injury, recovery and rehabilitation and awareness warrant further investigation. These findings, together with examination of the patterns of reporting of symptoms by individuals with TBI and their close others, suggest that it is simplistic to assume that only injury-related cognitive impairments affect the reporting of injury-related changes. The association of PTA with discrepancy scores suggests that cognition is 1 significant factor. However, just as significant is the emotional state of the injured person, which may lead to heightened or overreporting of injuryrelated changes by the person with TBI, as well as the emotional state of the close other, which may, in turn, lead to their overreporting of injury-related changes. It must be acknowledged that we do not know the direction of this association—that is, greater deficits may actually contribute to depression in either the individual with TBI or their close other. Alternatively, it may be that the presence of depression and associated negative thinking creates an exaggerated sense of impairments. As mentioned earlier, discrepancy scores can lead to erroneous assumptions that self-awareness is improving over time in the individual with TBI when it is actually the collateral ratings influencing this trend. This raises the question as to what discrepancy scores measure, especially when provided by different raters. The current study’s results showed that other factors may play an important role in ratings of function, as both injury severity and emotional factors influenced self and close other ratings. The time since discharge from hospital/outpatient care is another potentially influential factor that was not examined in this study. As stated earlier, it may be that the development of awareness occurs for both the person with TBI and close others, as the injured individual encounters the everyday consequences of their injuries following return to the community and attempts to engage in previous life roles.19 Discrepancy scores appear to be vulnerable to the effects of different raters, calculation methods, and interpretation techniques. It is critical to keep all these factors in mind when assessing awareness either using discrepancy scores or the ratings of injured individuals or their close others. www.headtraumarehab.com
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There are several limitations to the current study. The use of a cross-sectional design maximized the sample size and allowed for examination of awareness levels across a large time range after injury. However, this design did not allow for examination of change in awareness domains over time within individuals as was done in previous longitudinal studies.15,21,35 Despite our relatively large sample size, participants were more likely to be older and more educated than those not included in analyses. The current study’s results needed to be analyzed and interpreted in light of heterogeneity in the sample at different time points, particularly in terms of PTA duration, which was more severe in those studied at 120 and 240 months after injury. However, these differences were controlled in analyses. The impact of various aspects of cognitive functioning on awareness at various time points after injury was also not investigated in this study; this would represent another potentially fruitful area of research. Despite these limitations, our sample size was relatively large compared with other long-term studies36,46,65 and inclusive of participants at acute, short-term, and long-term time points after injury. The addition of close others’ mood state as well as that of the individuals with TBI allowed for a broader review of predictors of awareness. The results from this study highlight the fact that the construct of awareness is determined by various factors after TBI. Current methodological approaches to measuring awareness do not adequately capture this complex construct, which clearly requires both subjective and objective analysis, taking account not only of cognitive impairments, but also the emotional state of the rater and their exposure to
the relevant behaviors. The use of discrepancy scores is based on the assumption that the external criteria, against which the self-ratings of the individual with TBI are compared, are accurate. This study suggests that other factors need to be taken into account in a dynamic fashion. As a consequence, awareness ratings are likely to be inherently variable and unreliable. Future studies should employ longitudinal designs comparing various methods of measuring awareness (eg, discrepancy scores using clinician and close other ratings and objective measure such as neuropsychological testing) and examining the influence of a broader range of biological, psychological, emotional, and environmental factors. In summary, this study examined changes in self-awareness of deficits across acute/subacute (3-12 months), medium (24-60 months), and longer time periods (120-240 months) after injury using a cross-sectional design and the AQ. Time after injury did not emerge as a key factor in the trajectory of awareness in our sample. Rather, severity of the TBI and the emotional state of both the individual with TBI and the close other making the ratings significantly influenced reported changes. These factors need to be taken into account when interpreting ratings of injury-related problems and raise questions as to the appropriateness of relying on discrepancy scores to assess such changes. Self-awareness of deficits is associated with injury-related and emotional factors for both the individual with TBI and their family members. The assessment of awareness should be conducted with due consideration to these factors so that findings can be most effectively used to guide rehabilitation and return to participation in community life.
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