Neuropsychology 2014, Vol. 28, No. 5, 717–725
© 2014 American Psychological Association 0894-4105/14/$12.00 DOI: 10.1037/neu0000068
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Impaired Awareness of Deficits in Individuals With Neuropsychiatric Symptoms After Acquired Brain Injury: Associations With Treatment Motivation and Depressive Symptoms Sanne M. J. Smeets
Rudolf W. H. M. Ponds
Maastricht University
Maastricht University, and Adelante Rehabilitation Center, Hoensbroek, the Netherlands
Gisela Wolters Gregório
Climmy G. J. G. Pouwels
Maastricht University, and GGZ Oost Brabant, Boekel, the Netherlands
GGZ Oost Brabant, Boekel, the Netherlands
Ada J. Visscher
Ieke Winkens
GGZ Altrecht Vesalius and Hogeschool Inholland
Maastricht University and GGZ Oost Brabant, Boekel, the Netherlands
Caroline M. van Heugten Maastricht University Objective: The purpose of this study was to investigate impaired awareness of deficits in relation to treatment motivation and depressive symptoms in patients with neuropsychiatric symptoms after acquired brain injury. Method: The study had a Cross-sectional design with 93 outpatient brain injury patients with neuropsychiatric symptoms in the chronic phase after injury. Awareness was measured by the discrepancy in answers between patients and significant others and/or clinicians. Patients were divided into 3 awareness groups: underestimation, accurate estimation, and overestimation of competencies. Treatment motivation and depressive symptoms were measured with self-report questionnaires. Results: Average discrepancy scores suggested patients had accurate awareness of deficits. However, when dividing patients into 3 awareness groups, 30% underestimated, 38% accurately estimated, and 32% overestimated their competencies. Linear regression analysis with discrepancy scores showed overestimation of competencies (positive discrepancy scores) was associated with less depressive symptoms, whereas underestimation (negative discrepancy scores) was associated with more depressive symptoms ( ⫽ ⫺.28 to ⫺.42, p ⬍ .05). Group analysis revealed that the underestimation group reported significantly more depressive symptoms than the overestimation group ( ⫽ .43 to .44, p ⬍ .05). No significant difference between the accurate estimation and overestimation group was found (p ⬎ .05). An association between awareness and treatment motivation was not statistically confirmed. Conclusion: This study demonstrated that when considering awareness groups, more nuanced results arise than when only considering discrepancy scores. From a clinical and scientific standpoint, it is important to distinguish awareness groups in addition to considering mean discrepancy scores. Keywords: awareness, brain injuries, neuropsychiatry, depression, treatment motivation
This article was published Online First April 7, 2014. Sanne M. J. Smeets, School for Mental Health and Neuroscience (MHeNS), Department of Psychiatry and Neuropsychology, Maastricht University, Maastricht, the Netherlands; Rudolf W. H. M. Ponds, School for Mental Health and Neuroscience (MHeNS), Department of Psychiatry and Neuropsychology, Maastricht University, and Adelante Rehabilitation Center, Hoensbroek, the Netherlands; Gisela Wolters Gregório, School for Mental Health and Neuroscience (MHeNS), Department of Psychiatry and Neuropsychology, Maastricht University, and GGZ Oost Brabant, Department ABI Huize Padua, Boekel, the Netherlands; Climmy G. J. G. Pouwels, GGZ Oost Brabant, Department ABI Huize Padua; Ada J. Visscher, GGZ Altrecht Vesalius expertise en behandelcentrum voor neuropsychiatrie, and Lectoraat GGZ verpleegkunde, Hogeschool Inholland, Amsterdam, the Netherlands; Ieke Winkens, School for Mental Health and Neuroscience (MHeNS), De-
partment of Psychiatry and Neuropsychology, Maastricht University, and GGZ Oost Brabant, Department ABI Huize Padua; Caroline M. van Heugten, School for Mental Health and Neuroscience (MHeNS), Department of Psychiatry and Neuropsychology, Maastricht University, and Faculty of Psychology and Neuroscience, Department of Neuropsychology and Psychopharmacology, Maastricht University. We thank the following mental health care centers and their employees associated with the study for their work with regard to the data collection: Vesalius (Altrecht, Den Dolder), NAH Huize Padua (GGZ Oost Brabant, Boekel), Thalamus (Pro Persona, Wolfheze), and Bavo Europoort, Neuropsychiatry (Rotterdam). Correspondence concerning this article should be addressed to Caroline van Heugten, Maastricht University, School for Mental Health and Neuroscience, Location DRT 12, P.O. Box 616, 6200 MD Maastricht, the Netherlands. E-mail: [email protected] 717
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Impaired awareness of deficits after acquired brain injury (ABI) refers to the inability to appraise one’s strengths and weaknesses, as well as to appraise the ensuing implications on one’s life at present and in the future (Fleming, Strong, & Ashton, 1996; Prigatano & Schacter, 1991). Patients may lack awareness about their cognitive abilities, their behavioral and interpersonal skills, and the consequences of their behavior on others (Bogod, Mateer, & Macdonald, 2003). The prevalence of impaired awareness of deficits after ABI ranges from 20% to 48% (Fleming, Strong, & Ashton, 1998; Hoofien, Gilboa, Vakil, & Barak, 2004; McBrinn et al., 2008; Noe et al., 2005; Prigatano, 2005; Starkstein, Jorge, & Robinson, 2010), depending on factors such as time since injury and injury severity, as well as the measurement used to assess the awareness of deficits (Smeets, Ponds, Verhey, & van Heugten, 2012). The failure to recognize one’s own deficits can be disabling for the patient, family members, and clinical staff. Better awareness of deficits is associated with more favorable rehabilitation and employment outcomes (Leung & Liu, 2011; Ownsworth, Desbois, Grant, Fleming, & Strong, 2006). Two important factors that may be associated with impaired self-awareness are treatment motivation (Fleming et al., 1998) and depressive symptoms (Ownsworth & Fleming, 2005; Ownsworth & Oei, 1998). Treatment motivation may explain why better awareness is associated with better rehabilitation outcomes. Drieschner, Lammers, and van der Staak (2004) hypothesized that better problem recognition contributes to a higher motivation to engage in treatment, and this, in turn, contributes to a better treatment outcome. Although a relationship between awareness of deficits following ABI and treatment motivation has frequently been suggested (Fleming et al., 1996; Lam, McMahon, Priddy, & Gehred-Schultz, 1988; Sherer, Bergloff, Boake, High, & Levin, 1998; Sherer, Bergloff, Levin, et al., 1998; Trahan, Pépin, & Hopps, 2006), this relationship has only been directly investigated in one study that found that a high self-awareness group was more motivated to change and comply with treatment than a low selfawareness group (Fleming et al., 1998). The relationship between self-awareness and depressive symptoms seems more complex. Some authors have hypothesized that impaired awareness may increase the risk of developing depression due to unrealistic expectations, followed by failed attempts to reach goals without an understanding of why these attempts failed (Ownsworth & Fleming, 2005; Ownsworth & Oei, 1998). However, Fleming et al. (1998) reported that in patients with ABI, 1 year postinjury, impaired awareness was associated with lower levels of emotional distress (i.e., less depression and anxiety symptoms) and better awareness of deficits was associated with increased emotional distress. Ownsworth and colleagues (Ownsworth & Fleming, 2005; Ownsworth & Oei, 1998) suggested that this increase in emotional distress is part of an adaptive adjustment process. They further hypothesized that discrepant theories regarding the relationship between impaired awareness and depression may be explained by a protective effect of unawareness in the early stages of recovery, which may restrain the adjustment process, followed by the harmful effects of persistent unawareness on emotional distress due to unrealistic expectations and experiences of failure (Ownsworth & Fleming, 2005; Ownsworth et al., 2007; Ownsworth & Oei, 1998). Nevertheless, this complicated relationship requires further investigation.
The current study investigated the relationships between selfawareness, treatment motivation, and depressive symptoms in patients with ABI in the chronic phase after injury. Patients were referred to outpatient mental health clinics because of neuropsychiatric symptoms. Studies have suggested that the prevalence of unawareness may be increased in these patients relative to those without neuropsychiatric symptoms (Hoofien et al., 2004; Prigatano & Altman, 1990). The sample for this study is therefore particularly well-suited to understand the relationships between awareness of deficits, treatment motivation, and depressive symptoms. Furthermore, these patients frequently seek out mental health care, have trouble reintegrating in the community, and require long-term care and support (Bryant et al., 2010; Rao & Lyketsos, 2000). Therefore, it is important to gain knowledge about factors such as awareness that may improve patient outcome and lead to better treatment options. We predict that in patients with ABI, in the chronic phase after injury, lower awareness of deficits would be associated with diminished treatment motivation. Furthermore, we expect that patients with impaired awareness would report more depressive symptoms (Ownsworth & Fleming, 2005).
Method Participants Patients were recruited from consecutive admissions during the period from September 2010 to January 2012 to the outpatient units of four mental health centers in the Netherlands. Participants were patients referred to the outpatient mental health clinic because of neuropsychiatric symptoms following ABI. In addition, a significant other (SO) and the treating neuropsychologist of each patient participated. Patients were included if they were 18 years or older, had suffered ABI, had behavioral or emotional problems following ABI, and were at least 6 months postinjury. Patients were excluded if they had no sufficient command of the Dutch language, were unable to complete the questionnaires on the basis of clinical judgment, or had a degenerative brain disease or whiplash. The SOs were included if they were 18 years or older, knew the patient well, and had frequent contact with the patient. SOs were excluded if they had insufficient command of the Dutch language, were unable to complete the questionnaires on the basis of clinical judgment, or had a neurological or psychiatric disorder.
Procedure A neuropsychologist at each institute screened patients for participation during the first interview with the patients at the mental health center. Eligible patients and SOs received an information letter regarding the study from the neuropsychologist. Patients who provided written consent completed neuropsychological tests and questionnaires, which were administered during regular neuropsychological assessment at the start of the diagnostic procedure. SOs who provided written consent completed the questionnaires individually at the center or at home. The neuropsychologist completed the awareness questionnaires after completion of the diagnostic procedure.
IMPAIRED AWARENESS AFTER ACQUIRED BRAIN INJURY
The neuropsychologist, neuropsychological assistant, or intern collected the demographic information and injury-related information from the patient’s file. The Medical Ethics Committee of Maastricht University Medical Center and the research committees of each of the participating institutions approved the procedure.
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Measurements Demographic and injury-related information. The following information was extracted from the patient’s file: date of birth; sex; education level; use of psychopharmacological medication; type and date of brain injury; clinical disorders diagnosis from the Diagnostic and Statistical Manual of Mental Disorders (4th ed., text rev.; DSM-IV; American Psychiatric Association, 2000), Global Assessment of Functioning (GAF) score (Axis I); and information about who referred the patient to the mental health clinic. From the SOs, the following information was collected: date of birth, sex, and relationship with the patient. Educational level was determined on an 8-point scale according to a standardized Dutch classification system (de Bie, 1987). These categories were reduced to low (1 to 4) and high (5 to 8) education. The GAF Scale of the DSM–IV (Axis V) is a clinical judgment of an individual’s symptoms and level of psychological, social, and occupational function. Scores range from 0 to 100, with higher scores representing fewer symptoms and a higher level of function (American Psychiatric Association, 2000). The SOs completed the Neuropsychiatric Inventory Questionnaire (NPI-Q; de Jonghe, Kat, Kalisvaart, & Boelaarts, 2003; Kaufer et al., 2000). This is a brief questionnaire form of the Neuropsychiatric Inventory (NPI; Cummings, 1994). The NPI-Q is an informant-based rating scale developed to assess neuropsychiatric disturbances in patients with dementia. The scale has good reliability and validity (de Jonghe et al., 2003; Kaufer et al., 2000), and its use in patients with traumatic brain injury (TBI) has been supported (Kilmer, 2006). The NPI-Q evaluates 12 neuropsychiatric symptoms: delusions, hallucinations, agitation/aggression, dysphoria/depression, anxiety, apathy, irritability/liability, euphoria, disinhibition, aberrant motor behavior, nighttime behavior disturbances, and appetite/eating abnormalities. The SO indicates the severity and frequency of each symptom. The percentage of patients in which a symptom was present, and the frequency and severity of the symptom, were the reported outcomes. Impaired awareness of deficits. Awareness Questionnaire (AQ). The AQ (Sherer, Bergloff, Boake, et al., 1998) is a 17-item questionnaire used to assess impaired self-awareness after brain injury. Respondents are asked to rate how well they perform on a variety of motor/sensory, cognitive, and behavioral/affective activities compared with before the injury. Responses range from 1 (much worse) to 5 (much better). Different AQ forms for patients, SOs, and clinicians exist. The patient rates his own behavior, and the SO and clinician rate the patient’s behavior. The discrepancy between the patient’s score and the SO (AQP vs. SO) or clinician (AQP vs. C) score is a measure of self-awareness. The discrepancy score is calculated by subtracting the SO’s or clinician’s score from the patient’s score: the greater the discrepancy, the more impaired the patient’s selfawareness (range ⫺68 to 68). Positive discrepancies indicate overestimation, and negative discrepancies indicate underestimation, of
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difficulties. In the current sample, the internal consistencies for all three forms were good (Cronbach’s ␣ ⱖ 8). Patient Competency Rating Scale (PCRS). After the inclusion of about 20 patients, we noticed that for cases in which the injury happened a long time ago (e.g., during childhood), the patients and SOs could not complete the AQ. Therefore, the PCRS was added to the protocol, as this awareness scale asks respondents how well a patient can perform certain activities at this moment (Prigatano et al., 1986). The 30 items are rated on a 5-point Likert scale from 1 (can’t do) to 5 (can do with ease). The PCRS has three forms: a patient form, an SO form, and a clinician form. A discrepancy score is calculated between the patient’s score and the SO (PCRSP vs. SO) or clinician (PCRSP vs. C), similar to the method described for the AQ. Scores range from ⫺120 to 120. In addition, the PCRS was used to divide patients into three awareness groups— underestimation, good estimation, and overestimation of competencies—following a method described by Prigatano and Altman (1990). Patients were classified into groups by calculating the discrepancy between the patient and SO or clinician for each item. The number of items were calculated in which the patient rating was lower than the SO rating (P ⬍ SO), exactly equal to the SO rating (P ⫽ SO) and greater than the SO rating (P ⬎ O). Patients were classified in the underestimation group when the number of P ⬍ SO items was greater than the number of P ⫽ SO and P ⬎ SO items. To be in the good-estimation group, the number of P ⫽ SO items had to be the highest of the three categories. Finally, to be in the overestimation group, the number of P ⬎ SO items had to be the highest. This procedure was repeated for the patient versus clinician ratings. Both categorizations were reported. The PCRS has good psychometric properties (Smeets et al., 2012). In the current sample, the internal consistency of all three forms was good (Cronbach’s ␣ ⱖ .9). Treatment motivation. Motivation for Traumatic Brain Injury Rehabilitation Questionnaire (MOT-Q). The MOT-Q (Chervinsky et al., 1998) is a 31-item self-report questionnaire used to assess the desire and interest to undertake rehabilitation. Patients rate the items on a 5-point scale from ⫺2 (strongly disagree) to 2 (strongly agree). Scores are added and the total score ranges between ⫺62 and 62. Higher scores are indicative of higher motivation for rehabilitation. The MOT-Q has good overall internal consistency in ABI and TBI samples (Bains, Powell, & Lorenc, 2007; Chervinsky et al., 1998). For the purpose of this study, the MOT-Q was translated into Dutch according to the forward-backward translation method. The overall internal consistency of the scale in this sample was acceptable (Cronbach’s ␣ ⫽ .63). Visual Analogue Scale (VAS) for treatment motivation. In addition to the MOT-Q, a VAS was designed to determine treatment motivation. Because this is the first time that the MOT-Q was used in a Dutch sample, the VAS was used a control measure. Patients were asked to rate their level of treatment motivation on 10-cm line that ranged from 0 (not at all motivated) to 10 (very motivated). The absolute rating was used as outcome. Depressive symptoms: Patient Health Questionnaire-9 (PHQ-9). The PHQ-9 (Kroenke, Spitzer, & Williams, 2001) is a 9-item scale that assesses the nine DSM–IV (American Psychiatric Association, 2000) criteria of depression on a 4-point Likert scale (0 ⫽ not at all; 3 ⫽ nearly every day). It is a self-report measure and scores range from 0 to 27, with higher scores indicating higher
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depression severity. Internal consistency of the scale is good, with a Cronbach’s alpha of 0.86 to 0.89 in several samples (Kroenke et al., 2001). Additionally, the PHQ-9 had good validity in a TBI sample (Fann et al., 2005). In the present sample, the internal consistency of the scale was good (Cronbach’s alpha ⫽ .83).
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Statistical Analyses Descriptive analyses were performed to describe the sample, including awareness of deficits (discrepancy scores on the PCRS and AQ) and its related groups (overestimation, good estimation, and underestimation). The awareness groups were based on the procedure described by Prigatano and Altman (1990) and only available for the PCRS. To investigate the relationships between awareness, treatment motivation, and depressive symptoms, linear regression analyses were conducted with treatment motivation (MOT-Q and VAS) or depressive symptoms (PHQ-9) as dependent variables. Awareness of deficits was included as a predictor variable. Age, gender, and level of education were added to the models as covariates. Additional correlation analyses were conducted to explore if potentially relevant variables, such as injury etiology (traumatic or vascular) and time since injury, were related to awareness of deficits. In case of a significant result, the variable was added to the models as covariate. Four awareness measures were used: the discrepancy scores of the AQP vs. SO, AQP vs. C, PCRSP vs. SO, and PCRSP vs. C. The use of different raters to determine awareness might cause bias, and thus the discrepancy scores based on SO ratings and clinician ratings were separately analyzed and reported. For each awareness measure and each dependent variable, separate analyses were conducted. This resulted in eight models for the effect of awareness on treatment motivation (4 awareness measures ⫻ 2 outcome measures) and in four models for the effect of awareness on depressive symptoms (4 awareness measures ⫻ 1 outcome measure). By performing multiple tests, the probability of making a Type I error among at least one of the tests increases (familywise error rate). Usually to control for the familywise error rate, the p value is adjusted. However, to our knowledge, in regression analysis this method is used to adjust the p value for predictors within the model. In this case, we wanted to control for the familywise error rate across models. Therefore, an alternative method was used, and the null hypothesis was rejected if ⬎50% of the models were significant and showed a similar relationship. In addition, a linear regression analysis was performed with the awareness groups (over-, good, and underestimation) as independent variables and depressive symptoms as a dependent variable. The awareness groups were dummy coded, with the overestimation group as the reference group. The score on the PHQ-9 was used as the dependent variable, and awareness group as the independent variable. Age, sex, and education were entered as covariates. Results were considered significant when p ⬍ .05. For each analysis, the assumptions for regression analyses were tested. All statistical analyses were conducted using SPSS 20.0 for Mac OS X.
Results Sample Characteristics Demographic and injury-related characteristics are presented in Table 1. Three patients were included whose brain injury occurred less than six months ago. Based on clinical judgment, these patients were already in a stable phase after their injury in which spontaneous recovery was no longer likely. The sample consisted of 93 patients, of whom 70% used psychopharmacological medication. About one quarter used antidepressants (24.7%). The main DSM–IV (American Psychiatric Association, 2000) diagnosis was cognitive disorder (81.7%). The mean GAF score (54.5) indicated moderate psychiatric symptoms or moderate difficulty in social, occupational, or school functioning. Patients were referred to the mental health clinic by a general practitioner (46%), psychiatrist (21%), psychologist (9%), or a rehabilitation specialist (9%). The remaining 24% of the patients were referred by other persons or institutions (e.g., company doctor, psychiatric nurse, or support services). Most patients were referred for clinical consultation and treatment. The most frequently reported neuropsychiatric symptoms on the NPI were irritability (50%), depression (37%), and agitation (28%; see Table 2). Patients had fairly high motivation to engage in treatment, as reflected in the scores on the MOT-Q and VAS Treatment Motivation (see Table 1). On the PHQ-9 (see Table 1), on average, patients reported mild depressive symptoms (scores of 5 to 9). Thirty-four percent of the patients reported moderate to severe depressive symptoms (scores of 10 to 27). Sixty-two SOs participated in the study (38.7% male). The mean age of the SOs was 51.4 (SD ⫽ 10.2; range ⫽ 23.2 to 70.9).
Table 1 Sample Characteristics (N ⫽ 93) Frequency (%) Male Educational level Low High Psychopharmacological medication (Yes) Type of brain injury Traumatic Vascular Tumor Multiple Othera
Age Years postinjury GAF (n ⫽ 92) MOT-Q (n ⫽ 92) VAS Treatment Motivation (n ⫽ 85) PHQ-9
63 (67.7) 70 (75.3) 23 (24.7) 65 (69.9) 42 (45.2) 28 (30.1) 7 (7.5) 5 (5.4) 11 (11.8)
Mean (SD)
Range within sample
45.5 (12.7) 11.2 (11.1) 54.5 (7.2) 16.5 (15.5)
19.0 to 76.2 0.3 to 41.9 30 to 70 ⫺50.9 to 52.4
8.2 (2.1) 8.8 (5.9)
1 to 10 0 to 24
Note. GAF ⫽ Global Assessment of Functioning; MOT-Q ⫽ Motivation For Traumatic Brain Injury Rehabilitation Questionnaire; VAS ⫽ Visual Analogue Scale; PHQ-9 ⫽ Patient Health Questionnaire-9. a Anoxia (n ⫽ 1); inflammation (n ⫽ 3); intoxication (n ⫽ 4); not specified (n ⫽ 3).
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Table 2 Results of Neuropsychiatric Inventory (NPI) Frequency
Severity
Symptom
Symptom present n (%)
M (SD)
Range
M (SD)
Range
Delusions Hallucinations Agitation/Aggression Dysphoria/Depression Anxiety Euphoria Apathy Disinhibition Irritability/Liability Aberrant motor behavior Nighttime behavior disturbances Appetite/Eating abnormalities
10 (11%) 5 (5%) 26 (28%) 36 (38%) 24 (26%) 22 (24%) 24 (26%) 23 (25%) 46 (50%) 14 (15%) 26 (28%) 27 (29%)
1.8 (1) 1.8 (1) 2 (1) 2 (.9) 2.1 (1.1) 2.1 (1.2) 2 (1) 2.3 (1.1) 2.3 (1) 2.2 (1.3) 2.6 (1.1) 2.5 (1.1)
1 to 3 1 to 3 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4
1.8 (.8) 1.6 (1.3) 1.9 (.8) 1.9 (.7) 2 (.9) 2 (.8) 1.8 (.8) 2.1 (.8) 2.2 (.7) 1.6 (.8) 1.9 (.8) 2 (.9)
1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3
Note.
Range ⫽ range within sample.
Sixty-three percent of the SOs were the patients’ partner; 21% were the patients’ parent; 5%, a son or daughter; 5%, a friend; and 3%, another family member. In two cases (3%), the relationship between the SO and the patient was unknown.
Awareness of Deficits The scores on the awareness questionnaires are depicted in Table 3. The discrepancy scores indicate that, on average, patients had good awareness of their deficits (averages are close to zero, i.e., patients and SOs or clinicians reported an equal amount of difficulties). On average, the clinicians had higher scores on the awareness questionnaires than SOs. To better understand this difference between raters, we performed post hoc analyses. Paired samples t tests indicated that differences in ratings between SOs and clinicians were not significant. Furthermore, we compared the clinician ratings of the group of patients with both SO and clinician ratings to the group with only clinician ratings. An independent samples t test showed no significant differences between groups, indicating differences in ratings were not due to the use of different samples. When patients are divided into three groups, the following pattern emerges: 30% underestimate, 38% accurately estimate, and 32%
overestimate their competencies. The difference between these groups in terms of the number of items that patient’s under-, over-, and accurately estimate is shown in Table 3. Patients in the underestimation group underestimated their competencies on more items than patients in the good estimation and overestimation group. The same pattern was found for the good estimation and overestimation items and respective groups (see Table 4). Post hoc analyses (ANOVA followed by multiple comparisons tests with Bonferonni correction) revealed that these differences were statistically significant. Additionally, whether potential relevant variables such as injury etiology and time since injury were related to awareness of deficits was tested as well. No significant differences in awareness were found between patients with a TBI and patients with an injury with vascular etiology. In addition, no association was found between time since injury and awareness of deficits (r ⫽ ⫺.158 to .023).
Relations Between Awareness, Treatment Motivation, and Depressive Symptoms Significant negative relationships between treatment motivation and awareness were found in the models with the MOT-Q and AQP vs. C, the MOT-Q and PCRSP vs. C, and the VAS Treatment Motivation and the AQP vs. C (see Table 5). However, less than 50%
Table 3 Awareness Scores on the AQ and PCRS Patient
SO
M (SD)
Range n ⫽ 89
AQ Total Discrepancy PCRS Total Discrepancy
42.6 (10.8)
23.4 to 87.1
n ⫽ 67 109.2 (15.7)
68 to 150
Clinician
M (SD)
Range n ⫽ 58
39.3 (9.9) 1.7 (8.6)
23.4 to 83.9 ⫺29.8 to 19.3 n ⫽ 40
106.9 (16.0) .6 (17.0)
81 to 146 ⫺33 to 40
M (SD)
Range n ⫽ 90
40.0 (5.6) 2.6 (10.9)a
29 to 71 ⫺28.5 to 49
n ⫽ 67 108.3 (12.8) .89 (15.0)
81 to 145 ⫺34 to 44
Note. SO ⫽ significant other; AQ ⫽ Awareness Questionnaire; PCRS ⫽ Patient Competency Rating Scale; Discrepancy ⫽ Patient Score ⫺ SO/Clinician Score. a n ⫽ 89.
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722 Table 4 Awareness Groups Based on the PCRS
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PCRSP vs. SO PCRSP vs. C
PCRSP vs. SO n items underestimation n items accurate estimation n items overestimation PCRSP vs. C n items underestimation n items accurate estimation n items overestimation
Underestimation group n (%)
Accurate estimation group n (%)
Overestimation group n (%)
13 (32.5%) 18 (26.9%)
15 (37.5%) 27 (40.3%)
12 (30.0%) 22 (32.8%)
M (SD)
M (SD)
M (SD)
15.5 (3.6) 9.8 (2.9) 4.4 (3.0)
6.8 (2.8) 15.9 (3.1) 6.3 (3.2)
4.4 (3.0) 8.5 (2.2) 16.8 (3.8)
15.7 (3.7) 8.7 (2.4) 5.1 (3.4)
7.5 (2.7) 14.9 (2.3) 7.3 (3.1)
5.6 (3.0) 8.2 (2.8) 16.0 (4.3)
Note. Items under-, over-, and accurate estimation ⫽ the number of items a patient under-, over-, and accurately estimated a competency itemized by awareness group. PCRS ⫽ Patient Competency Rating Scale; P ⫽ patient; SO ⫽ significant other; C ⫽ clinician.
of the models showed a significant negative association, and therefore we cannot consider this relationship to be confirmed. However, six of the eight models point to a negative relationship, indicating that patients who overestimate their competencies (i.e., have larger positive discrepancy scores) tend to be less motivated to engage in treatment. The results of the regression models regarding awareness and depressive symptoms are presented in Table 5. All models showed a significant negative association between awareness and depressive symptoms. These results indicate that patients who overestimate their competencies (i.e., larger positive discrepancy scores) reported less depressive symptoms than patients who underestimate and accurately estimate their difficulties (e.g., smaller positive and negative discrepancy scores). The results are visualized in Figure 1. Table 5 Regression Models for Awareness and Treatment Motivation and Awareness and Depressive Symptoms
MOT-Q AQP vs. SO (n ⫽ 58) AQP vs. C (n ⫽ 86) PCRSP vs. SO (n ⫽ 40) PCRSP vs. C (n ⫽ 62) VAS Treatment Motivation AQP vs. SO (n ⫽ 53) AQP vs. C (n ⫽ 81) PCRSP vs. SO (n ⫽ 37) PCRSP vs. C (n ⫽ 63) PHQ-9 AQP vs. SO (n ⫽ 58) AQP vs. C (n ⫽ 89) PCRSP vs. SO (n ⫽ 40) PCRSP vs. C (n ⫽ 67)
B
SE B
Beta
R2
95% CI
⫺.19 ⫺.85 .23 ⫺.30
.2 .12 .11 .13
⫺.12 ⫺.59ⴱⴱⴱ .30ⴱ ⫺.30ⴱ
.20 .45 .36 .19
⫺.59 to .21 ⫺1.1 to ⫺.61 .002 to .45 ⫺.56 to ⫺.03
⫺.00 ⫺.65 .25 ⫺.29
.30 .23 .23 .20
⫺.00 ⫺.30ⴱⴱ .19 ⫺.19
.09 ⫺.61 to .6 .16 ⫺1.11 to ⫺.18 .18 ⫺.23 to .72 .12 ⫺.69 to .11
⫺.18 ⫺.19 ⫺.09 ⫺.15
.08 .05 .04 .04
⫺.28ⴱ ⫺.35ⴱⴱⴱ ⫺.29ⴱ ⫺.42ⴱⴱ
.19 .22 .42 .28
⫺.34 to ⫺.01 ⫺.29 to .08 ⫺.17 to ⫺.003 ⫺.24 to ⫺.07
Note. All models are controlled for age, sex, and education. MOT-Q ⫽ Motivation for Traumatic Brain Injury Rehabilitation Questionnaire; VAS ⫽ Visual Analogue Scale; PHQ-9 ⫽ Patient Health Questionnaire-9; PCRS ⫽ Patient Competency Rating Scale; p ⫽ patient; SO ⫽ significant other; C ⫽ clinician. ⴱ p ⬍ .05. ⴱⴱ p ⬍ .01. ⴱⴱⴱ p ⬍ .001.
Awareness Groups and Depressive Symptoms Analysis with the awareness groups revealed that the underestimation group reported significantly more depressive symptoms than patients in the overestimation group (Model PCRSP vs. SO:  ⫽ .43, t[33] ⫽ 2.4, p ⬍ .05, R2 ⫽ .46; Model PCRSP vs. C:  ⫽ .44, t[61] ⫽ 3.4, p ⫽ .001, R2 ⫽ .31). In both models, no significant difference was found between patients in the good estimation and overestimation group.
Discussion The goal of the current study was to investigate impaired awareness of deficits in relation to treatment motivation and depressive symptoms in patients with neuropsychiatric symptoms after ABI. Based on the mean discrepancy scores, it appeared that patients had accurate awareness of their deficits. However, dividing patients into three groups revealed a more nuanced picture: 30% of the patients underestimated, 38% accurately estimated, and 32% overestimated their competencies. This suggests that dividing patients into groups based on level of awareness may reveal important differences in over- and underestimation that are neglected when averaging discrepancy scores. Regarding awareness and treatment motivation, the results suggested that patients who overestimated their competencies (i.e., larger discrepancy scores) were less motivated to participate in treatment. However, the relationship previously found by Fleming et al. (1998) could not be confirmed, because the effect was statistically significant in only three models. This may be due to the small dispersion of the treatment motivation scores in the current study or to differences in measuring treatment motivation between studies. Notably, the significant models were all based on patient and clinician discrepancy ratings. Furthermore, regression analyses revealed a moderate effect of discrepancy scores on depressive symptoms. Overestimation of competencies (i.e., positive discrepancy scores) was associated with less depressive symptoms, whereas underestimation (i.e., negative discrepancy scores) was associated with more depressive symptoms. These results are in line with previous findings in samples of patients with ABI up to three years after injury (Fleming et al., 1998; Godfrey, Partridge, Knight, & Bishara, 1993). However, based on the chronicity of the injury in the current
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Figure 1. Relationship between awareness measured with discrepancy scores and depressive symptoms. PHQ-9 ⫽ Patient Health Questionnaire-9; AQ ⫽ Awareness Questionnaire; PCRS ⫽ Patient Competency Rating Scale; P ⫽ patient; SO ⫽ significant other; C ⫽ clinician.
sample, it was expected that persistent unawareness would be associated with more depressive symptoms (Ownsworth & Fleming, 2005). This hypothesis was not confirmed by analyses in the different awareness groups. Patients who underestimated their competencies reported more depressive symptoms relative to patients who accurately estimated and overestimated their competencies. Patients in the overestimation group did not report more depressive symptoms than patients in the accurate estimation group. These results are in line with results from a previous study (McBrinn et al., 2008).
Strengths and Limitations This study has several unique features. First, this study focused on a specific group of patients with ABI and neuropsychiatric
symptoms who are often excluded from research. Furthermore, it is one of the few studies addressing the relationship between impaired awareness of deficits and treatment motivation. Although this relationship seems to be self-evident, the scientific evidence for it remains scarce. Additionally, with regard to the measurement of awareness, in addition to the typically used discrepancy scores, we conducted analyses based on different awareness groups. It should be noted that this study only addressed intellectual awareness (i.e., the knowledge of having difficulties with certain abilities). The ability of patients to recognize problems when they occur and to anticipate these problems was not measured. Future studies should incorporate measurements that tap into these additional aspects of awareness (Morton & Barker, 2010; Smeets et al., 2012). Furthermore, the results indicated that the linear relationship between awareness and depressive symptoms was largely
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driven by patients who underestimated their competencies. However, due to the cross-sectional design of the study, we cannot test whether underestimation is a result of these depressive symptoms or whether underestimation of competencies leads to these depressive symptoms.
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Clinical Implications and Future Directions Our results imply that future research should consider dividing patients into distinct awareness groups (underestimation, accurate estimation, and overestimation), as these groups may differ in terms of depressive symptoms. Patients who underestimated their competencies reported more depressive symptoms than patients who accurately estimated or overestimated their competencies, which is a finding with clear clinical relevance. It can be hypothesized that underestimation of competencies may have a psychiatric basis, such as depression (Prigatano & Altman, 1990), whereas patients who overestimate their competencies may be protected from emotional distress (Ownsworth et al., 2007). A longitudinal study would be worthwhile for clarifying these relationships between awareness and depressive symptoms over time. This hypothesis does not imply that overestimation of competencies does not cause problems, but it does suggest that problems might be of a different nature than of emotional distress. Finally, although we attempted to capture an overall measure of awareness impairment, future studies on this topic should focus on treatment motivation in relation to specific domains of awareness, as patients may be aware of some deficits but not others (Prigatano & Altman, 1990). Consequently, treatment motivation may be high if patients have a specific impairment in mind when indicating their motivation level, whereas awareness may be impaired for other domains.
Conclusion This study demonstrated that, based on the mean discrepancy scores, on average, patients with neuropsychiatric symptoms after brain injury had accurate awareness about their competencies. However, dividing patients into three groups revealed that 30% of the patients underestimated, 38% accurately estimated, and 32% overestimated their competencies. In addition, the accurate estimation or overestimation of competencies was associated with less depressive symptoms, whereas underestimation was associated with more depressive symptoms. From a clinical and scientific standpoint, therefore, it is important to distinguish awareness groups in addition to considering mean discrepancy scores.
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IMPAIRED AWARENESS AFTER ACQUIRED BRAIN INJURY acquired brain injury: An exploratory analysis. Brain Injury, 22, 765– 772. doi:10.1080/02699050802372208 Morton, N., & Barker, L. (2010). The contribution of injury severity, executive and implicit functions to awareness of deficits after traumatic brain injury (TBI). Journal of the International Neuropsychological Society, 16, 1089 –1098. doi:10.1017/S1355617710000925 Noe, E., Ferri, J., Caballero, M. C., Villodre, R., Sanchez, A., & Chirivella, J. (2005). Self-awareness after acquired brain injury: Predictors and rehabilitation. Journal of Neurology, 252, 168 –175. doi:10.1007/ s00415-005-0625-2 Ownsworth, T., Desbois, J., Grant, E., Fleming, J., & Strong, J. (2006). The associations among self-awareness, emotional well-being, and employment outcome following acquired brain injury: A 12-month longitudinal study. Rehabilitation Psychology, 51, 50 –59. doi:10.1037/0090-5550.51 .1.50 Ownsworth, T., & Fleming, J. (2005). The relative importance of metacognitive skills, emotional status, and executive function in psychosocial adjustment following acquired brain injury. Journal of Head Trauma Rehabilitation, 20, 315–332. doi:10.1097/00001199-200507000-00004 Ownsworth, T., Fleming, J., Strong, J., Radel, M., Chan, W., & Clare, L. (2007). Awareness typologies, long-term emotional adjustment and psychosocial outcomes following acquired brain injury. Neuropsychological Rehabilitation, 17, 129 –150. doi:10.1080/09602010600615506 Ownsworth, T., & Oei, T. P. S. (1998). Depression after traumatic brain injury: Conceptualization and treatment considerations. Brain Injury, 12, 735–751. doi:10.1080/026990598122133 Prigatano, G. P. (2005). Disturbances of self-awareness and rehabilitation of patients with traumatic brain injury: A 20-year perspective. Journal of Head Trauma Rehabilitation, 20, 19 –29. Prigatano, G. P., & Altman, I. M. (1990). Impaired awareness of behavioral limitations after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 71, 1058 –1064.
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Prigatano, G. P., Fordyce, D., Zeiner, H., Roueche, J., Pepping, M., & Wood, B. (1986). Neuropsychological rehabilitation after brain injury. Baltimore, MD: Johns Hopkins University Press. Prigatano, G. P., & Schacter, D. L. (1991). Introduction. In G. P. Prigatano & D. L. Schacter (Eds.), Awareness of deficit after brain injury: Clinical and theoretical issues (pp. 3–16). New York, NY: Oxford University Press. Rao, V., & Lyketsos, C. (2000). Neuropsychiatric sequaelae of traumatic brain injury. Psychosomatics, 41, 95–103. doi:10.1176/appi.psy.41.2.95 Sherer, M., Bergloff, P., Boake, C., High, W., & Levin, E. (1998). The Awareness Questionnaire: Factor structure and internal consistency. Brain Injury, 12, 63– 68. doi:10.1080/026990598122863 Sherer, M., Bergloff, P., Levin, E., High, W. M., Jr., Oden, K. E., & Nick, T. G. (1998). Impaired awareness and employment outcome after traumatic brain injury. Journal of Head Trauma Rehabilitation, 13, 52– 61. Smeets, S. M., Ponds, R. W., Verhey, F. R., & van Heugten, C. M. (2012). Psychometric properties and feasibility of instruments used to assess awareness of deficits after acquired brain injury: A systematic review. Journal of Head Trauma Rehabilitation, 27, 433– 442. doi:10.1097/HTR .0b013e3182242f98 Starkstein, S. E., Jorge, R. E., & Robinson, R. G. (2010). The frequency, clinical correlates, and mechanism of anosognosia after stroke. Canadian Journal of Psychiatry, 55, 355–361. Trahan, E., Pépin, M., & Hopps, S. (2006). Impaired awareness of deficits and treatment adherence among people with traumatic brain injury or spinal cord injury. Journal of Head Trauma Rehabilitation, 21, 226 – 235.
Received September 6, 2013 Revision received January 29, 2014 Accepted February 6, 2014 䡲
© 2014 American Psychological Association 0894-4105/14/$12.00 DOI: 10.1037/neu0000068
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Impaired Awareness of Deficits in Individuals With Neuropsychiatric Symptoms After Acquired Brain Injury: Associations With Treatment Motivation and Depressive Symptoms Sanne M. J. Smeets
Rudolf W. H. M. Ponds
Maastricht University
Maastricht University, and Adelante Rehabilitation Center, Hoensbroek, the Netherlands
Gisela Wolters Gregório
Climmy G. J. G. Pouwels
Maastricht University, and GGZ Oost Brabant, Boekel, the Netherlands
GGZ Oost Brabant, Boekel, the Netherlands
Ada J. Visscher
Ieke Winkens
GGZ Altrecht Vesalius and Hogeschool Inholland
Maastricht University and GGZ Oost Brabant, Boekel, the Netherlands
Caroline M. van Heugten Maastricht University Objective: The purpose of this study was to investigate impaired awareness of deficits in relation to treatment motivation and depressive symptoms in patients with neuropsychiatric symptoms after acquired brain injury. Method: The study had a Cross-sectional design with 93 outpatient brain injury patients with neuropsychiatric symptoms in the chronic phase after injury. Awareness was measured by the discrepancy in answers between patients and significant others and/or clinicians. Patients were divided into 3 awareness groups: underestimation, accurate estimation, and overestimation of competencies. Treatment motivation and depressive symptoms were measured with self-report questionnaires. Results: Average discrepancy scores suggested patients had accurate awareness of deficits. However, when dividing patients into 3 awareness groups, 30% underestimated, 38% accurately estimated, and 32% overestimated their competencies. Linear regression analysis with discrepancy scores showed overestimation of competencies (positive discrepancy scores) was associated with less depressive symptoms, whereas underestimation (negative discrepancy scores) was associated with more depressive symptoms ( ⫽ ⫺.28 to ⫺.42, p ⬍ .05). Group analysis revealed that the underestimation group reported significantly more depressive symptoms than the overestimation group ( ⫽ .43 to .44, p ⬍ .05). No significant difference between the accurate estimation and overestimation group was found (p ⬎ .05). An association between awareness and treatment motivation was not statistically confirmed. Conclusion: This study demonstrated that when considering awareness groups, more nuanced results arise than when only considering discrepancy scores. From a clinical and scientific standpoint, it is important to distinguish awareness groups in addition to considering mean discrepancy scores. Keywords: awareness, brain injuries, neuropsychiatry, depression, treatment motivation
This article was published Online First April 7, 2014. Sanne M. J. Smeets, School for Mental Health and Neuroscience (MHeNS), Department of Psychiatry and Neuropsychology, Maastricht University, Maastricht, the Netherlands; Rudolf W. H. M. Ponds, School for Mental Health and Neuroscience (MHeNS), Department of Psychiatry and Neuropsychology, Maastricht University, and Adelante Rehabilitation Center, Hoensbroek, the Netherlands; Gisela Wolters Gregório, School for Mental Health and Neuroscience (MHeNS), Department of Psychiatry and Neuropsychology, Maastricht University, and GGZ Oost Brabant, Department ABI Huize Padua, Boekel, the Netherlands; Climmy G. J. G. Pouwels, GGZ Oost Brabant, Department ABI Huize Padua; Ada J. Visscher, GGZ Altrecht Vesalius expertise en behandelcentrum voor neuropsychiatrie, and Lectoraat GGZ verpleegkunde, Hogeschool Inholland, Amsterdam, the Netherlands; Ieke Winkens, School for Mental Health and Neuroscience (MHeNS), De-
partment of Psychiatry and Neuropsychology, Maastricht University, and GGZ Oost Brabant, Department ABI Huize Padua; Caroline M. van Heugten, School for Mental Health and Neuroscience (MHeNS), Department of Psychiatry and Neuropsychology, Maastricht University, and Faculty of Psychology and Neuroscience, Department of Neuropsychology and Psychopharmacology, Maastricht University. We thank the following mental health care centers and their employees associated with the study for their work with regard to the data collection: Vesalius (Altrecht, Den Dolder), NAH Huize Padua (GGZ Oost Brabant, Boekel), Thalamus (Pro Persona, Wolfheze), and Bavo Europoort, Neuropsychiatry (Rotterdam). Correspondence concerning this article should be addressed to Caroline van Heugten, Maastricht University, School for Mental Health and Neuroscience, Location DRT 12, P.O. Box 616, 6200 MD Maastricht, the Netherlands. E-mail: [email protected] 717
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Impaired awareness of deficits after acquired brain injury (ABI) refers to the inability to appraise one’s strengths and weaknesses, as well as to appraise the ensuing implications on one’s life at present and in the future (Fleming, Strong, & Ashton, 1996; Prigatano & Schacter, 1991). Patients may lack awareness about their cognitive abilities, their behavioral and interpersonal skills, and the consequences of their behavior on others (Bogod, Mateer, & Macdonald, 2003). The prevalence of impaired awareness of deficits after ABI ranges from 20% to 48% (Fleming, Strong, & Ashton, 1998; Hoofien, Gilboa, Vakil, & Barak, 2004; McBrinn et al., 2008; Noe et al., 2005; Prigatano, 2005; Starkstein, Jorge, & Robinson, 2010), depending on factors such as time since injury and injury severity, as well as the measurement used to assess the awareness of deficits (Smeets, Ponds, Verhey, & van Heugten, 2012). The failure to recognize one’s own deficits can be disabling for the patient, family members, and clinical staff. Better awareness of deficits is associated with more favorable rehabilitation and employment outcomes (Leung & Liu, 2011; Ownsworth, Desbois, Grant, Fleming, & Strong, 2006). Two important factors that may be associated with impaired self-awareness are treatment motivation (Fleming et al., 1998) and depressive symptoms (Ownsworth & Fleming, 2005; Ownsworth & Oei, 1998). Treatment motivation may explain why better awareness is associated with better rehabilitation outcomes. Drieschner, Lammers, and van der Staak (2004) hypothesized that better problem recognition contributes to a higher motivation to engage in treatment, and this, in turn, contributes to a better treatment outcome. Although a relationship between awareness of deficits following ABI and treatment motivation has frequently been suggested (Fleming et al., 1996; Lam, McMahon, Priddy, & Gehred-Schultz, 1988; Sherer, Bergloff, Boake, High, & Levin, 1998; Sherer, Bergloff, Levin, et al., 1998; Trahan, Pépin, & Hopps, 2006), this relationship has only been directly investigated in one study that found that a high self-awareness group was more motivated to change and comply with treatment than a low selfawareness group (Fleming et al., 1998). The relationship between self-awareness and depressive symptoms seems more complex. Some authors have hypothesized that impaired awareness may increase the risk of developing depression due to unrealistic expectations, followed by failed attempts to reach goals without an understanding of why these attempts failed (Ownsworth & Fleming, 2005; Ownsworth & Oei, 1998). However, Fleming et al. (1998) reported that in patients with ABI, 1 year postinjury, impaired awareness was associated with lower levels of emotional distress (i.e., less depression and anxiety symptoms) and better awareness of deficits was associated with increased emotional distress. Ownsworth and colleagues (Ownsworth & Fleming, 2005; Ownsworth & Oei, 1998) suggested that this increase in emotional distress is part of an adaptive adjustment process. They further hypothesized that discrepant theories regarding the relationship between impaired awareness and depression may be explained by a protective effect of unawareness in the early stages of recovery, which may restrain the adjustment process, followed by the harmful effects of persistent unawareness on emotional distress due to unrealistic expectations and experiences of failure (Ownsworth & Fleming, 2005; Ownsworth et al., 2007; Ownsworth & Oei, 1998). Nevertheless, this complicated relationship requires further investigation.
The current study investigated the relationships between selfawareness, treatment motivation, and depressive symptoms in patients with ABI in the chronic phase after injury. Patients were referred to outpatient mental health clinics because of neuropsychiatric symptoms. Studies have suggested that the prevalence of unawareness may be increased in these patients relative to those without neuropsychiatric symptoms (Hoofien et al., 2004; Prigatano & Altman, 1990). The sample for this study is therefore particularly well-suited to understand the relationships between awareness of deficits, treatment motivation, and depressive symptoms. Furthermore, these patients frequently seek out mental health care, have trouble reintegrating in the community, and require long-term care and support (Bryant et al., 2010; Rao & Lyketsos, 2000). Therefore, it is important to gain knowledge about factors such as awareness that may improve patient outcome and lead to better treatment options. We predict that in patients with ABI, in the chronic phase after injury, lower awareness of deficits would be associated with diminished treatment motivation. Furthermore, we expect that patients with impaired awareness would report more depressive symptoms (Ownsworth & Fleming, 2005).
Method Participants Patients were recruited from consecutive admissions during the period from September 2010 to January 2012 to the outpatient units of four mental health centers in the Netherlands. Participants were patients referred to the outpatient mental health clinic because of neuropsychiatric symptoms following ABI. In addition, a significant other (SO) and the treating neuropsychologist of each patient participated. Patients were included if they were 18 years or older, had suffered ABI, had behavioral or emotional problems following ABI, and were at least 6 months postinjury. Patients were excluded if they had no sufficient command of the Dutch language, were unable to complete the questionnaires on the basis of clinical judgment, or had a degenerative brain disease or whiplash. The SOs were included if they were 18 years or older, knew the patient well, and had frequent contact with the patient. SOs were excluded if they had insufficient command of the Dutch language, were unable to complete the questionnaires on the basis of clinical judgment, or had a neurological or psychiatric disorder.
Procedure A neuropsychologist at each institute screened patients for participation during the first interview with the patients at the mental health center. Eligible patients and SOs received an information letter regarding the study from the neuropsychologist. Patients who provided written consent completed neuropsychological tests and questionnaires, which were administered during regular neuropsychological assessment at the start of the diagnostic procedure. SOs who provided written consent completed the questionnaires individually at the center or at home. The neuropsychologist completed the awareness questionnaires after completion of the diagnostic procedure.
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The neuropsychologist, neuropsychological assistant, or intern collected the demographic information and injury-related information from the patient’s file. The Medical Ethics Committee of Maastricht University Medical Center and the research committees of each of the participating institutions approved the procedure.
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Measurements Demographic and injury-related information. The following information was extracted from the patient’s file: date of birth; sex; education level; use of psychopharmacological medication; type and date of brain injury; clinical disorders diagnosis from the Diagnostic and Statistical Manual of Mental Disorders (4th ed., text rev.; DSM-IV; American Psychiatric Association, 2000), Global Assessment of Functioning (GAF) score (Axis I); and information about who referred the patient to the mental health clinic. From the SOs, the following information was collected: date of birth, sex, and relationship with the patient. Educational level was determined on an 8-point scale according to a standardized Dutch classification system (de Bie, 1987). These categories were reduced to low (1 to 4) and high (5 to 8) education. The GAF Scale of the DSM–IV (Axis V) is a clinical judgment of an individual’s symptoms and level of psychological, social, and occupational function. Scores range from 0 to 100, with higher scores representing fewer symptoms and a higher level of function (American Psychiatric Association, 2000). The SOs completed the Neuropsychiatric Inventory Questionnaire (NPI-Q; de Jonghe, Kat, Kalisvaart, & Boelaarts, 2003; Kaufer et al., 2000). This is a brief questionnaire form of the Neuropsychiatric Inventory (NPI; Cummings, 1994). The NPI-Q is an informant-based rating scale developed to assess neuropsychiatric disturbances in patients with dementia. The scale has good reliability and validity (de Jonghe et al., 2003; Kaufer et al., 2000), and its use in patients with traumatic brain injury (TBI) has been supported (Kilmer, 2006). The NPI-Q evaluates 12 neuropsychiatric symptoms: delusions, hallucinations, agitation/aggression, dysphoria/depression, anxiety, apathy, irritability/liability, euphoria, disinhibition, aberrant motor behavior, nighttime behavior disturbances, and appetite/eating abnormalities. The SO indicates the severity and frequency of each symptom. The percentage of patients in which a symptom was present, and the frequency and severity of the symptom, were the reported outcomes. Impaired awareness of deficits. Awareness Questionnaire (AQ). The AQ (Sherer, Bergloff, Boake, et al., 1998) is a 17-item questionnaire used to assess impaired self-awareness after brain injury. Respondents are asked to rate how well they perform on a variety of motor/sensory, cognitive, and behavioral/affective activities compared with before the injury. Responses range from 1 (much worse) to 5 (much better). Different AQ forms for patients, SOs, and clinicians exist. The patient rates his own behavior, and the SO and clinician rate the patient’s behavior. The discrepancy between the patient’s score and the SO (AQP vs. SO) or clinician (AQP vs. C) score is a measure of self-awareness. The discrepancy score is calculated by subtracting the SO’s or clinician’s score from the patient’s score: the greater the discrepancy, the more impaired the patient’s selfawareness (range ⫺68 to 68). Positive discrepancies indicate overestimation, and negative discrepancies indicate underestimation, of
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difficulties. In the current sample, the internal consistencies for all three forms were good (Cronbach’s ␣ ⱖ 8). Patient Competency Rating Scale (PCRS). After the inclusion of about 20 patients, we noticed that for cases in which the injury happened a long time ago (e.g., during childhood), the patients and SOs could not complete the AQ. Therefore, the PCRS was added to the protocol, as this awareness scale asks respondents how well a patient can perform certain activities at this moment (Prigatano et al., 1986). The 30 items are rated on a 5-point Likert scale from 1 (can’t do) to 5 (can do with ease). The PCRS has three forms: a patient form, an SO form, and a clinician form. A discrepancy score is calculated between the patient’s score and the SO (PCRSP vs. SO) or clinician (PCRSP vs. C), similar to the method described for the AQ. Scores range from ⫺120 to 120. In addition, the PCRS was used to divide patients into three awareness groups— underestimation, good estimation, and overestimation of competencies—following a method described by Prigatano and Altman (1990). Patients were classified into groups by calculating the discrepancy between the patient and SO or clinician for each item. The number of items were calculated in which the patient rating was lower than the SO rating (P ⬍ SO), exactly equal to the SO rating (P ⫽ SO) and greater than the SO rating (P ⬎ O). Patients were classified in the underestimation group when the number of P ⬍ SO items was greater than the number of P ⫽ SO and P ⬎ SO items. To be in the good-estimation group, the number of P ⫽ SO items had to be the highest of the three categories. Finally, to be in the overestimation group, the number of P ⬎ SO items had to be the highest. This procedure was repeated for the patient versus clinician ratings. Both categorizations were reported. The PCRS has good psychometric properties (Smeets et al., 2012). In the current sample, the internal consistency of all three forms was good (Cronbach’s ␣ ⱖ .9). Treatment motivation. Motivation for Traumatic Brain Injury Rehabilitation Questionnaire (MOT-Q). The MOT-Q (Chervinsky et al., 1998) is a 31-item self-report questionnaire used to assess the desire and interest to undertake rehabilitation. Patients rate the items on a 5-point scale from ⫺2 (strongly disagree) to 2 (strongly agree). Scores are added and the total score ranges between ⫺62 and 62. Higher scores are indicative of higher motivation for rehabilitation. The MOT-Q has good overall internal consistency in ABI and TBI samples (Bains, Powell, & Lorenc, 2007; Chervinsky et al., 1998). For the purpose of this study, the MOT-Q was translated into Dutch according to the forward-backward translation method. The overall internal consistency of the scale in this sample was acceptable (Cronbach’s ␣ ⫽ .63). Visual Analogue Scale (VAS) for treatment motivation. In addition to the MOT-Q, a VAS was designed to determine treatment motivation. Because this is the first time that the MOT-Q was used in a Dutch sample, the VAS was used a control measure. Patients were asked to rate their level of treatment motivation on 10-cm line that ranged from 0 (not at all motivated) to 10 (very motivated). The absolute rating was used as outcome. Depressive symptoms: Patient Health Questionnaire-9 (PHQ-9). The PHQ-9 (Kroenke, Spitzer, & Williams, 2001) is a 9-item scale that assesses the nine DSM–IV (American Psychiatric Association, 2000) criteria of depression on a 4-point Likert scale (0 ⫽ not at all; 3 ⫽ nearly every day). It is a self-report measure and scores range from 0 to 27, with higher scores indicating higher
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depression severity. Internal consistency of the scale is good, with a Cronbach’s alpha of 0.86 to 0.89 in several samples (Kroenke et al., 2001). Additionally, the PHQ-9 had good validity in a TBI sample (Fann et al., 2005). In the present sample, the internal consistency of the scale was good (Cronbach’s alpha ⫽ .83).
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Statistical Analyses Descriptive analyses were performed to describe the sample, including awareness of deficits (discrepancy scores on the PCRS and AQ) and its related groups (overestimation, good estimation, and underestimation). The awareness groups were based on the procedure described by Prigatano and Altman (1990) and only available for the PCRS. To investigate the relationships between awareness, treatment motivation, and depressive symptoms, linear regression analyses were conducted with treatment motivation (MOT-Q and VAS) or depressive symptoms (PHQ-9) as dependent variables. Awareness of deficits was included as a predictor variable. Age, gender, and level of education were added to the models as covariates. Additional correlation analyses were conducted to explore if potentially relevant variables, such as injury etiology (traumatic or vascular) and time since injury, were related to awareness of deficits. In case of a significant result, the variable was added to the models as covariate. Four awareness measures were used: the discrepancy scores of the AQP vs. SO, AQP vs. C, PCRSP vs. SO, and PCRSP vs. C. The use of different raters to determine awareness might cause bias, and thus the discrepancy scores based on SO ratings and clinician ratings were separately analyzed and reported. For each awareness measure and each dependent variable, separate analyses were conducted. This resulted in eight models for the effect of awareness on treatment motivation (4 awareness measures ⫻ 2 outcome measures) and in four models for the effect of awareness on depressive symptoms (4 awareness measures ⫻ 1 outcome measure). By performing multiple tests, the probability of making a Type I error among at least one of the tests increases (familywise error rate). Usually to control for the familywise error rate, the p value is adjusted. However, to our knowledge, in regression analysis this method is used to adjust the p value for predictors within the model. In this case, we wanted to control for the familywise error rate across models. Therefore, an alternative method was used, and the null hypothesis was rejected if ⬎50% of the models were significant and showed a similar relationship. In addition, a linear regression analysis was performed with the awareness groups (over-, good, and underestimation) as independent variables and depressive symptoms as a dependent variable. The awareness groups were dummy coded, with the overestimation group as the reference group. The score on the PHQ-9 was used as the dependent variable, and awareness group as the independent variable. Age, sex, and education were entered as covariates. Results were considered significant when p ⬍ .05. For each analysis, the assumptions for regression analyses were tested. All statistical analyses were conducted using SPSS 20.0 for Mac OS X.
Results Sample Characteristics Demographic and injury-related characteristics are presented in Table 1. Three patients were included whose brain injury occurred less than six months ago. Based on clinical judgment, these patients were already in a stable phase after their injury in which spontaneous recovery was no longer likely. The sample consisted of 93 patients, of whom 70% used psychopharmacological medication. About one quarter used antidepressants (24.7%). The main DSM–IV (American Psychiatric Association, 2000) diagnosis was cognitive disorder (81.7%). The mean GAF score (54.5) indicated moderate psychiatric symptoms or moderate difficulty in social, occupational, or school functioning. Patients were referred to the mental health clinic by a general practitioner (46%), psychiatrist (21%), psychologist (9%), or a rehabilitation specialist (9%). The remaining 24% of the patients were referred by other persons or institutions (e.g., company doctor, psychiatric nurse, or support services). Most patients were referred for clinical consultation and treatment. The most frequently reported neuropsychiatric symptoms on the NPI were irritability (50%), depression (37%), and agitation (28%; see Table 2). Patients had fairly high motivation to engage in treatment, as reflected in the scores on the MOT-Q and VAS Treatment Motivation (see Table 1). On the PHQ-9 (see Table 1), on average, patients reported mild depressive symptoms (scores of 5 to 9). Thirty-four percent of the patients reported moderate to severe depressive symptoms (scores of 10 to 27). Sixty-two SOs participated in the study (38.7% male). The mean age of the SOs was 51.4 (SD ⫽ 10.2; range ⫽ 23.2 to 70.9).
Table 1 Sample Characteristics (N ⫽ 93) Frequency (%) Male Educational level Low High Psychopharmacological medication (Yes) Type of brain injury Traumatic Vascular Tumor Multiple Othera
Age Years postinjury GAF (n ⫽ 92) MOT-Q (n ⫽ 92) VAS Treatment Motivation (n ⫽ 85) PHQ-9
63 (67.7) 70 (75.3) 23 (24.7) 65 (69.9) 42 (45.2) 28 (30.1) 7 (7.5) 5 (5.4) 11 (11.8)
Mean (SD)
Range within sample
45.5 (12.7) 11.2 (11.1) 54.5 (7.2) 16.5 (15.5)
19.0 to 76.2 0.3 to 41.9 30 to 70 ⫺50.9 to 52.4
8.2 (2.1) 8.8 (5.9)
1 to 10 0 to 24
Note. GAF ⫽ Global Assessment of Functioning; MOT-Q ⫽ Motivation For Traumatic Brain Injury Rehabilitation Questionnaire; VAS ⫽ Visual Analogue Scale; PHQ-9 ⫽ Patient Health Questionnaire-9. a Anoxia (n ⫽ 1); inflammation (n ⫽ 3); intoxication (n ⫽ 4); not specified (n ⫽ 3).
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Table 2 Results of Neuropsychiatric Inventory (NPI) Frequency
Severity
Symptom
Symptom present n (%)
M (SD)
Range
M (SD)
Range
Delusions Hallucinations Agitation/Aggression Dysphoria/Depression Anxiety Euphoria Apathy Disinhibition Irritability/Liability Aberrant motor behavior Nighttime behavior disturbances Appetite/Eating abnormalities
10 (11%) 5 (5%) 26 (28%) 36 (38%) 24 (26%) 22 (24%) 24 (26%) 23 (25%) 46 (50%) 14 (15%) 26 (28%) 27 (29%)
1.8 (1) 1.8 (1) 2 (1) 2 (.9) 2.1 (1.1) 2.1 (1.2) 2 (1) 2.3 (1.1) 2.3 (1) 2.2 (1.3) 2.6 (1.1) 2.5 (1.1)
1 to 3 1 to 3 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4 1 to 4
1.8 (.8) 1.6 (1.3) 1.9 (.8) 1.9 (.7) 2 (.9) 2 (.8) 1.8 (.8) 2.1 (.8) 2.2 (.7) 1.6 (.8) 1.9 (.8) 2 (.9)
1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3 1 to 3
Note.
Range ⫽ range within sample.
Sixty-three percent of the SOs were the patients’ partner; 21% were the patients’ parent; 5%, a son or daughter; 5%, a friend; and 3%, another family member. In two cases (3%), the relationship between the SO and the patient was unknown.
Awareness of Deficits The scores on the awareness questionnaires are depicted in Table 3. The discrepancy scores indicate that, on average, patients had good awareness of their deficits (averages are close to zero, i.e., patients and SOs or clinicians reported an equal amount of difficulties). On average, the clinicians had higher scores on the awareness questionnaires than SOs. To better understand this difference between raters, we performed post hoc analyses. Paired samples t tests indicated that differences in ratings between SOs and clinicians were not significant. Furthermore, we compared the clinician ratings of the group of patients with both SO and clinician ratings to the group with only clinician ratings. An independent samples t test showed no significant differences between groups, indicating differences in ratings were not due to the use of different samples. When patients are divided into three groups, the following pattern emerges: 30% underestimate, 38% accurately estimate, and 32%
overestimate their competencies. The difference between these groups in terms of the number of items that patient’s under-, over-, and accurately estimate is shown in Table 3. Patients in the underestimation group underestimated their competencies on more items than patients in the good estimation and overestimation group. The same pattern was found for the good estimation and overestimation items and respective groups (see Table 4). Post hoc analyses (ANOVA followed by multiple comparisons tests with Bonferonni correction) revealed that these differences were statistically significant. Additionally, whether potential relevant variables such as injury etiology and time since injury were related to awareness of deficits was tested as well. No significant differences in awareness were found between patients with a TBI and patients with an injury with vascular etiology. In addition, no association was found between time since injury and awareness of deficits (r ⫽ ⫺.158 to .023).
Relations Between Awareness, Treatment Motivation, and Depressive Symptoms Significant negative relationships between treatment motivation and awareness were found in the models with the MOT-Q and AQP vs. C, the MOT-Q and PCRSP vs. C, and the VAS Treatment Motivation and the AQP vs. C (see Table 5). However, less than 50%
Table 3 Awareness Scores on the AQ and PCRS Patient
SO
M (SD)
Range n ⫽ 89
AQ Total Discrepancy PCRS Total Discrepancy
42.6 (10.8)
23.4 to 87.1
n ⫽ 67 109.2 (15.7)
68 to 150
Clinician
M (SD)
Range n ⫽ 58
39.3 (9.9) 1.7 (8.6)
23.4 to 83.9 ⫺29.8 to 19.3 n ⫽ 40
106.9 (16.0) .6 (17.0)
81 to 146 ⫺33 to 40
M (SD)
Range n ⫽ 90
40.0 (5.6) 2.6 (10.9)a
29 to 71 ⫺28.5 to 49
n ⫽ 67 108.3 (12.8) .89 (15.0)
81 to 145 ⫺34 to 44
Note. SO ⫽ significant other; AQ ⫽ Awareness Questionnaire; PCRS ⫽ Patient Competency Rating Scale; Discrepancy ⫽ Patient Score ⫺ SO/Clinician Score. a n ⫽ 89.
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PCRSP vs. SO PCRSP vs. C
PCRSP vs. SO n items underestimation n items accurate estimation n items overestimation PCRSP vs. C n items underestimation n items accurate estimation n items overestimation
Underestimation group n (%)
Accurate estimation group n (%)
Overestimation group n (%)
13 (32.5%) 18 (26.9%)
15 (37.5%) 27 (40.3%)
12 (30.0%) 22 (32.8%)
M (SD)
M (SD)
M (SD)
15.5 (3.6) 9.8 (2.9) 4.4 (3.0)
6.8 (2.8) 15.9 (3.1) 6.3 (3.2)
4.4 (3.0) 8.5 (2.2) 16.8 (3.8)
15.7 (3.7) 8.7 (2.4) 5.1 (3.4)
7.5 (2.7) 14.9 (2.3) 7.3 (3.1)
5.6 (3.0) 8.2 (2.8) 16.0 (4.3)
Note. Items under-, over-, and accurate estimation ⫽ the number of items a patient under-, over-, and accurately estimated a competency itemized by awareness group. PCRS ⫽ Patient Competency Rating Scale; P ⫽ patient; SO ⫽ significant other; C ⫽ clinician.
of the models showed a significant negative association, and therefore we cannot consider this relationship to be confirmed. However, six of the eight models point to a negative relationship, indicating that patients who overestimate their competencies (i.e., have larger positive discrepancy scores) tend to be less motivated to engage in treatment. The results of the regression models regarding awareness and depressive symptoms are presented in Table 5. All models showed a significant negative association between awareness and depressive symptoms. These results indicate that patients who overestimate their competencies (i.e., larger positive discrepancy scores) reported less depressive symptoms than patients who underestimate and accurately estimate their difficulties (e.g., smaller positive and negative discrepancy scores). The results are visualized in Figure 1. Table 5 Regression Models for Awareness and Treatment Motivation and Awareness and Depressive Symptoms
MOT-Q AQP vs. SO (n ⫽ 58) AQP vs. C (n ⫽ 86) PCRSP vs. SO (n ⫽ 40) PCRSP vs. C (n ⫽ 62) VAS Treatment Motivation AQP vs. SO (n ⫽ 53) AQP vs. C (n ⫽ 81) PCRSP vs. SO (n ⫽ 37) PCRSP vs. C (n ⫽ 63) PHQ-9 AQP vs. SO (n ⫽ 58) AQP vs. C (n ⫽ 89) PCRSP vs. SO (n ⫽ 40) PCRSP vs. C (n ⫽ 67)
B
SE B
Beta
R2
95% CI
⫺.19 ⫺.85 .23 ⫺.30
.2 .12 .11 .13
⫺.12 ⫺.59ⴱⴱⴱ .30ⴱ ⫺.30ⴱ
.20 .45 .36 .19
⫺.59 to .21 ⫺1.1 to ⫺.61 .002 to .45 ⫺.56 to ⫺.03
⫺.00 ⫺.65 .25 ⫺.29
.30 .23 .23 .20
⫺.00 ⫺.30ⴱⴱ .19 ⫺.19
.09 ⫺.61 to .6 .16 ⫺1.11 to ⫺.18 .18 ⫺.23 to .72 .12 ⫺.69 to .11
⫺.18 ⫺.19 ⫺.09 ⫺.15
.08 .05 .04 .04
⫺.28ⴱ ⫺.35ⴱⴱⴱ ⫺.29ⴱ ⫺.42ⴱⴱ
.19 .22 .42 .28
⫺.34 to ⫺.01 ⫺.29 to .08 ⫺.17 to ⫺.003 ⫺.24 to ⫺.07
Note. All models are controlled for age, sex, and education. MOT-Q ⫽ Motivation for Traumatic Brain Injury Rehabilitation Questionnaire; VAS ⫽ Visual Analogue Scale; PHQ-9 ⫽ Patient Health Questionnaire-9; PCRS ⫽ Patient Competency Rating Scale; p ⫽ patient; SO ⫽ significant other; C ⫽ clinician. ⴱ p ⬍ .05. ⴱⴱ p ⬍ .01. ⴱⴱⴱ p ⬍ .001.
Awareness Groups and Depressive Symptoms Analysis with the awareness groups revealed that the underestimation group reported significantly more depressive symptoms than patients in the overestimation group (Model PCRSP vs. SO:  ⫽ .43, t[33] ⫽ 2.4, p ⬍ .05, R2 ⫽ .46; Model PCRSP vs. C:  ⫽ .44, t[61] ⫽ 3.4, p ⫽ .001, R2 ⫽ .31). In both models, no significant difference was found between patients in the good estimation and overestimation group.
Discussion The goal of the current study was to investigate impaired awareness of deficits in relation to treatment motivation and depressive symptoms in patients with neuropsychiatric symptoms after ABI. Based on the mean discrepancy scores, it appeared that patients had accurate awareness of their deficits. However, dividing patients into three groups revealed a more nuanced picture: 30% of the patients underestimated, 38% accurately estimated, and 32% overestimated their competencies. This suggests that dividing patients into groups based on level of awareness may reveal important differences in over- and underestimation that are neglected when averaging discrepancy scores. Regarding awareness and treatment motivation, the results suggested that patients who overestimated their competencies (i.e., larger discrepancy scores) were less motivated to participate in treatment. However, the relationship previously found by Fleming et al. (1998) could not be confirmed, because the effect was statistically significant in only three models. This may be due to the small dispersion of the treatment motivation scores in the current study or to differences in measuring treatment motivation between studies. Notably, the significant models were all based on patient and clinician discrepancy ratings. Furthermore, regression analyses revealed a moderate effect of discrepancy scores on depressive symptoms. Overestimation of competencies (i.e., positive discrepancy scores) was associated with less depressive symptoms, whereas underestimation (i.e., negative discrepancy scores) was associated with more depressive symptoms. These results are in line with previous findings in samples of patients with ABI up to three years after injury (Fleming et al., 1998; Godfrey, Partridge, Knight, & Bishara, 1993). However, based on the chronicity of the injury in the current
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Figure 1. Relationship between awareness measured with discrepancy scores and depressive symptoms. PHQ-9 ⫽ Patient Health Questionnaire-9; AQ ⫽ Awareness Questionnaire; PCRS ⫽ Patient Competency Rating Scale; P ⫽ patient; SO ⫽ significant other; C ⫽ clinician.
sample, it was expected that persistent unawareness would be associated with more depressive symptoms (Ownsworth & Fleming, 2005). This hypothesis was not confirmed by analyses in the different awareness groups. Patients who underestimated their competencies reported more depressive symptoms relative to patients who accurately estimated and overestimated their competencies. Patients in the overestimation group did not report more depressive symptoms than patients in the accurate estimation group. These results are in line with results from a previous study (McBrinn et al., 2008).
Strengths and Limitations This study has several unique features. First, this study focused on a specific group of patients with ABI and neuropsychiatric
symptoms who are often excluded from research. Furthermore, it is one of the few studies addressing the relationship between impaired awareness of deficits and treatment motivation. Although this relationship seems to be self-evident, the scientific evidence for it remains scarce. Additionally, with regard to the measurement of awareness, in addition to the typically used discrepancy scores, we conducted analyses based on different awareness groups. It should be noted that this study only addressed intellectual awareness (i.e., the knowledge of having difficulties with certain abilities). The ability of patients to recognize problems when they occur and to anticipate these problems was not measured. Future studies should incorporate measurements that tap into these additional aspects of awareness (Morton & Barker, 2010; Smeets et al., 2012). Furthermore, the results indicated that the linear relationship between awareness and depressive symptoms was largely
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driven by patients who underestimated their competencies. However, due to the cross-sectional design of the study, we cannot test whether underestimation is a result of these depressive symptoms or whether underestimation of competencies leads to these depressive symptoms.
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Clinical Implications and Future Directions Our results imply that future research should consider dividing patients into distinct awareness groups (underestimation, accurate estimation, and overestimation), as these groups may differ in terms of depressive symptoms. Patients who underestimated their competencies reported more depressive symptoms than patients who accurately estimated or overestimated their competencies, which is a finding with clear clinical relevance. It can be hypothesized that underestimation of competencies may have a psychiatric basis, such as depression (Prigatano & Altman, 1990), whereas patients who overestimate their competencies may be protected from emotional distress (Ownsworth et al., 2007). A longitudinal study would be worthwhile for clarifying these relationships between awareness and depressive symptoms over time. This hypothesis does not imply that overestimation of competencies does not cause problems, but it does suggest that problems might be of a different nature than of emotional distress. Finally, although we attempted to capture an overall measure of awareness impairment, future studies on this topic should focus on treatment motivation in relation to specific domains of awareness, as patients may be aware of some deficits but not others (Prigatano & Altman, 1990). Consequently, treatment motivation may be high if patients have a specific impairment in mind when indicating their motivation level, whereas awareness may be impaired for other domains.
Conclusion This study demonstrated that, based on the mean discrepancy scores, on average, patients with neuropsychiatric symptoms after brain injury had accurate awareness about their competencies. However, dividing patients into three groups revealed that 30% of the patients underestimated, 38% accurately estimated, and 32% overestimated their competencies. In addition, the accurate estimation or overestimation of competencies was associated with less depressive symptoms, whereas underestimation was associated with more depressive symptoms. From a clinical and scientific standpoint, therefore, it is important to distinguish awareness groups in addition to considering mean discrepancy scores.
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Received September 6, 2013 Revision received January 29, 2014 Accepted February 6, 2014 䡲
