Abstract
Childhood traumatic brain injury (CTBI) is one of the most common causes of childhood mortality and morbidity, with psychosocial impairment being among the most debilitating persisting consequences. Child and adolescent survivors of CTBI have fewer friends and lower self-esteem with a higher risk of developing a psychiatric disorder. In most research to date, findings in the psychosocial domain have been based on parent reports, with the child or adolescent only consulted infrequently. If there is a discrepancy identified between parent and child reported symptoms and behaviors, this is generally interpreted as resulting from impaired self-awareness in the child. The aim of this study was to 1) examine the agreement between self- and proxy-reported long-term psychosocial outcomes and 2) investigate the predictors of outcome 16 years post-CTBI. Thirty-three young adults (mean, 21.36 years; standard deviation, 2.75), with a CTBI sustained between 1 and 7 years of age, and a significant other completed questionnaires assessing the young adults' social and psychological functioning. Young adults and their significant other had good-to-excellent agreement on communication as well as alcohol and drug use scales. There was poorer agreement for the overall internalizing symptoms, anxious/depressed, withdrawn, thought, and rule-breaking behaviors. On the scales with poor agreement, there was no consistent contribution identified for any injury or preinjury factors. Preinjury adaptive behavior partly predicted withdrawn and overall internalizing symptoms, with a trend to also partly predict anxious/depressed and rule-breaking behavior reported by the significant other. Because young adults and significant others had poor agreement on the less-overt symptoms, these young adults may be at a higher risk of developing more-severe symptoms or disorders if it is not identified in time.
Introduction
A
Beauchamp and Anderson's 4,5 SOCIAL model proposes that there are three core influences on normal psychosocial functioning in healthy children. The first can be described as brain development and integrity, which may be disrupted in CTBI survivors whose brain development is affected by injury. The second component incorporates internal and external factors. Internal factors are characteristics of the child, such as personality or temperament. External factors include features of the child's environment, such as socioeconomic status (SES), parent-child interaction, family function, and cultural influences. These two components interact with the third component, namely, current abilities of the child, which include attention/executive functioning, communication, and social cognition. According to the SOCIAL model, these three components influence and predict psychosocial development in the areas of social adjustment, competence, and participation. Yeates and colleagues 6 have described a similar framework in which they also suggest that injury-related (severity, location, and age of injury) and non-injury-related (child characteristics and family environment) factors influence the current social abilities of the child, such as social cognition (social information processing), social interaction, and social adjustment. These models provide a conceptual framework for understanding the possible predictors of psychosocial outcome post-CTBI. Though sophisticated models currently exist to assist in the understanding of psychosocial function through childhood, progress has been hindered by limitations in measurement tools in the psychosocial domains and an emphasis on information provided by proxy raters, without direct reference to the individual.
Psychosocial outcomes are often measured by use of questionnaires. 7 In the case of children who have suffered a brain injury, it is most common for parents and/or teachers to complete these, whereas for adolescents and young adults, self-report questionnaires are more frequently added to parent/teacher ratings. Coherence between the young person and parent/teacher ratings is often used as an indicator of the young person's self-awareness regarding psychosocial functioning. 8 However, for a comprehensive assessment of psychosocial functioning and predictive factors, a combination of self-report, proxy-report, and direct measures is optimal. 7
Most research employing rater coherence has investigated the agreement between adult patients and their closest relatives and found that personality and emotional regulation are reported equally between patients and their close relatives. 8 –10 Further, high agreement is has been found between more severely injured patients and their relatives for extraversion, with increasing agreement with time since injury, suggesting recovery of self-awareness over time. 9 Of note, patient and relative ratings are not always consistent. Hart and colleagues 11 investigated awareness acutely and 1 year post–adult injury and found that participants reported higher behavioral and affective functioning than their relatives. These discrepancies suggest that inconsistencies between patient and “others” reports might be, in part, related to the “observability” of the problem behaviors, with more internalizing behaviors less overt and therefore more difficult for others to rate accurately.
Research investigating agreement regarding psychosocial functioning between parents/teachers and children/adolescents is scarce. Green and colleagues 12 explored such agreement using The Sydney Psychosocial Reintegration Scale for Children (Soo and colleagues, in preparation) and found that adolescents and parents had a fair-to-excellent concordance rating for psychosocial functioning, particularly for adolescents still living at home. In the long term, as children with CTBI become increasingly independent, parent and young person reports might diverge. In this case, the use of a report from a significant other, such as a partner, best friend, or close colleague, could provide extra information of their psychosocial functioning.
Although it is generally agreed that long-term difficulties in psychosocial functioning exist in the CTBI population, it is not yet clear what factors contribute to these impairments, as well as how these may interact. Injury severity has been associated with impaired psychosocial outcomes, with severely injured children showing more-impaired social skills 13 and poorer psychological outcomes, such as anxiety and attention-deficit hyperactivity disorder symptoms 13,14 at 2–5 years postinjury. Further, age at injury has been linked to outcome, with parental ratings showing poorer psychosocial function for children injured at a younger age. 15
Other factors contributing to psychological outcomes after CTBI include the history of child and family psychological disorders. 16 –21 Wade and colleagues 22 also report that preinjury family function and parenting style affects parent-rated behavioral and adaptive functioning 1 year after CTBI. Children whose parents experienced more worries had a smaller support system, developed more psychological symptoms, and were functioning lower socially than children from more resilient families. Supporting these results, and using a cross-sectional design in which time since injury varied from 3.92 to 16.61 years, Wells and colleagues 15 found that environmental factors, such as being reared in a nurturing, supportive environment, resulted in acceptance by peers and the community, and engagement in age-appropriate social activities function as a resilience factor for psychosocial problems.
These studies support the two models outlined above, 4 –6 although no study to date has prospectively investigated psychosocial outcomes into adulthood using self-report. The primary aim of this article was to investigate agreement between the young adult and their significant other regarding their psychosocial function in the long term after CTBI. A second aim was to explore predictors of psychosocial outcomes rated by these different sources. We expected that there would be a difference between the participant and significant other in reported psychosocial functioning, especially on more “internalizing” domains, such as depressive or anxious symptoms, with the participant reporting higher symptoms than their significant other. Further, it was hypothesized that injury characteristics (age of injury and injury severity), preinjury child factors (adaptive functioning), and environmental factors (SES and family functioning) would contribute to long-term psychosocial outcomes 16 years post-CTBI. Specifically, more severe injury, lower SES, impaired adaptive behavior, and family functioning would contribute to poorer psychosocial functioning.
Methods
Participants
This study was part of a prospective, longitudinal study evaluating long-term outcome from CTBI. 13,23 The young adults participating in the current study were recruited from a larger sample for which recruitment commenced 16 years ago. Initial recruitment involved 109 children with CTBI identified from consecutive acute admissions to the neurosurgery department at The Royal Children's Hospital (RCH; Melbourne, Australia). Patients were included in the longitudinal study if they met the following criteria: 1) from 1 to 7 years of age at time of injury; 2) evidence of traumatic brain injury (TBI), including altered consciousness; 3) medical records that were sufficient to determine injury severity; 4) able to complete the study protocol; and 5) able to speak English. Patients were excluded from the study if they met any of the following criteria: 1) nonaccidental TBI; 2) penetrating head injury; 3) previous TBI; and 4) pre-existing neurological or documented developmental disorder. Of these 109 children, 7 were excluded because of pre-existing neurological, psychiatric, or developmental problems (n=2), previous TBI (n=1), or had sustained an inflicted brain injury (n=4). One child had sustained such severe injuries that he was unable to complete the protocol at any time point. An additional six families declined participation, leaving the original sample of 96 CTBI participants.
Of the original CTBI sample of 96 participants, 43 agreed to participate in the current 16-year follow-up study. Sixty-one of the original sample were unable to be located (n=31), not able to visit the hospital because of time requirements, travel distance, or current stressful life events (n=21), or had passed away (n=1). Of the 43 remaining participants, 10 either did not bring or return their or their significant others questionnaires, leaving a sample of 33 CTBI survivors.
Severity groups were constructed by combining period of altered consciousness (Glasgow Coma Scale; GCS), 24 with the presence of radiological and neurological abnormalities: 1) mild TBI (n=9), with GCS on admission 13–15, no evidence of mass lesion on computed tomography/magnetic resonance imaging (CT/MRI) scans, and no neurologic deficits; 2) moderate TBI (n=19), with GCS on admission 9–12, and/or mass lesion or other evidence of specific injury on CT/MRI, and/or neurological impairment; and 3) severe TBI (n=8), with GCS on admission 3–8, and mass lesion or other evidence of specific injury on CT/MRI, and/or neurological impairment. No participants were on medication at the time of their 16-year assessment.
Measures
Predictors
Injury-related information
Information on each child's medical history was collected during the acute phase. While the child was admitted, medical records were reviewed daily and GCS, length of coma, neurological signs, and surgical interventions were recorded.
Child preinjury functioning
Adaptive functioning
To measure preinjury adaptive functioning during the acute phase, the Vineland Adaptive Behavior Scale (VABS) 25 was used. The VABS parent report survey contains 297 items measuring adaptive behavior in four domains, namely, communication (receptive, expressive, and written), daily living skills (personal, domestic, and community), socialization (interpersonal relationships, play and leisure time, and coping skills), and motor skills (gross and fine) and a Total Adaptive Behavior score (mean [M], 100; standard deviation [SD], 15). The Total Adaptive Behavior score was used in analyses, with a higher score indicating better functioning.
Psychological functioning
The Personality Inventory for Children, revised, 26 was employed to measure preinjury internalizing and externalizing symptoms and was administered during the acute phase. This questionnaire is a parent report, including 131 items of child intellectual, emotional, and behavioral functioning, which parents responded as either true or false. These items are divided into four factors, being undisciplined/poor self control, social incompetence, internalization/somatic symptoms, and cognitive development (factor scores: M, 50; SD, 10). An average score of these four factors was calculated and employed as a predictor, with a higher score indicating poorer functioning.
Environmental factors
Family functioning was measured acutely using the Family Functioning Questionnaire (FFQ; Noller 1988, unpublished manuscript), which is divided into three factors: conflict, intimacy, and parenting style, with a higher score reflecting more difficulties. The intimacy factor was chosen because it was highly correlated with conflict and parenting style.
SES was evaluated during the acute phase using the Daniel's Scale of Occupational Prestige, 27 where the parent's occupation is rated on a 7-point scale, with a higher score representing lower SES.
Outcomes 16 years postinjury
Social functioning
The Adaptive Behavior Assessment System (ABAS-II) 28 was used to measure social functioning completed by the participant and a significant other. The ABAS-II is a standardized questionnaire assessing adaptive behavior in three domains, namely, conceptual (communication, functional academics, and self-direction), social (leisure and social), and practical (community use, home living, health and safety, self-care, and work). For the purpose of this study, the social subscale (M, 10; SD, 3) was used in the analysis. A lower score on the scale (<7) represents greater impairments.
Psychological functioning
The Achenbach System of Empirically Based Assessment (ASEBA) Adult Self Report and Adult Behavior Checklist (ASR and ABCL) 29 was employed to measure internalizing and externalizing symptoms completed by both the participant and a significant other, respectively. This standardized questionnaire contains 126 items, scored on a 3-point scale (0=not true; 1=somewhat or sometimes true; 2=very true or often true; M, 50; SD, 10), with a higher score representing greater impairments (borderline/clinical range if score ≥65 for the scales; ≥60 domain scores). The ASR and ABCL are divided into overall internalizing symptoms (anxious/depressed, withdrawn, and somatic complaints), overall externalizing symptoms (aggressive, rule-breaking, and intrusive behavior) and total problems (internalizing plus externalizing plus thought and attention problems). The ASEBA also explores substance-use behavior (tobacco, alcohol, and drugs). All subscales were used to investigate the coherence in ratings between the young adult and their significant other.
Procedure
This study was approved by the RCH Human Research Ethics Committee. In the acute stage, participants were consecutively recruited from the RCH after admission for a TBI. During the 16-year follow-up recruitment phase, the initial participant group was approached by a tracing letter and a follow-up phone call. The interested participants who consented to participate were observed at an outpatient clinic at the RCH, with the exception of 2 participants, who were assessed at their home. Both parent/significant other and the participant filled in a questionnaire booklet, and the participant was assessed during a 3-h session.
Statistical analyses
Quantitative analyses were conducted using SPSS statistical software (version 20; IBM Corp., Armonk, NY). 30 To exclude any potential confounding influences, participating and nonparticipating CTBI groups were compared on demographic, preinjury, and medical factors as well as psychosocial outcomes, using an independent sample t-test and chi-square test, as appropriate. Intraclass correlation coefficients (ICCs) were calculated to investigate agreement between participant and significant other ratings on psychosocial scores. Cichetti's criteria for the ICCs were used for defining the rating of the agreement, with ICC of <0.40=poor, 0.40–0.59=fair, 0.60–0.74=good, and >0.74=excellent agreement. 31 Hierarchical regression analyses were conducted to identify factors that predict long-term psychosocial outcomes in the young adult CTBI population. Because of the longitudinal design, the predictor information was incomplete, with 5 participants missing one of the acute phase variables. These participants were excluded in the hierarchical regression analyses.
Results
Sample
In Table 1, the demographics and preinjury functioning of participating and nonparticipating CTBI groups are displayed. The groups differed only in the proportion of males and females, with a smaller ratio of males in the currently participating CTBI group (χ2[1, n=54]=7.039; p=0.009).
p=0.018.
CTBI, childhood traumatic brain injury; M, mean; SD, standard deviation; SES, socioeconomic status; GCS, Glasgow Coma Scale.
Agreement on psychosocial outcomes
Table 2 shows the result of the agreement analyses for self and significant other reports on the social subscale of the ABAS and the ASEBA subscales. Of the 33 significant other reports, 28 were parent report and 5 were partner report.
p<0.05; ** p<0.01; *** p<0.001.
ABAS-II, Adaptive Behavior Assessment System, second edition; ASEBA, Adult Self Report and Adult Behavior Checklist.
For the alcohol use, drug use, and communication scales, good-to-excellent agreement was found between the young adults and their significant other (see Table 2). A fair agreement was found for the subscales of socialization, somatic complaint, externalizing symptoms, and total problems. There was poor agreement between the young adult and significant other report for anxious/depressed, withdrawn, thought problems, rule-breaking behavior, and overall internalizing behaviors. Agreement on attention and aggressive behavior scales was also poor and nonsignificant.
All the scores, participant and significant other reports, fell in the normal range for all subscales, although there was a trend for participants to rate themselves higher on anxious/depressed, withdrawn, and attention symptoms, compared to their significant other.
Predicting psychosocial outcomes
To investigate the poor agreement on the anxious/depressed, withdrawn, thought, rule-breaking, and overall internalizing symptoms, a hierarchical regression was employed to determine predicting factors of psychosocial outcomes (Tables 3 and 4).
VABS, Vineland Adaptive Behavior Scale; SES, socioeconomic status; FFQ, Family Function Questionnaire.
VABS, Vineland Adaptive Behavior Scale; SES, socioeconomic status; FFQ, Family Function Questionnaire.
For the psychosocial outcomes reported by the young adults, none of the preinjury and injury-related factors significantly contributed to outcomes. In contrast, preinjury adaptive behavior was predictive of withdrawn (F(5,17)=1.88; p=0.05) and internalizing behaviors (F(5,17)=1.81; p=0.03) reported by the significant other, with a trend for a relationship between this domain and anxious/depressed symptoms (p=0.08), and rule breaking (p=0.08).
Discussion
This is one of the first prospective, longitudinal studies investigating psychosocial outcomes up to 16 years post-CTBI. These young people were recruited acutely and followed-up regularly to 16 years postinjury. The 16-year sample includes one third of the original sample (and half of those who were able to be contacted), with attrition rates comparable to studies of a similar duration. The only difference found between the original and current samples was for gender, with less males participating during the current follow-up. On other demographic and injury factors, the samples did not differ.
The aim of this study was to investigate agreement between the young adult and their significant other on their current psychosocial status and examine the predictors of these outcomes. Overall, young adults and their significant other did not report the same level of psychosocial functioning, and preinjury adaptive behavior was the single consistent predictor of long-term psychosocial functioning, and then only from the perspective of significant others.
Agreement on psychosocial outcomes
Confirming our hypothesis, young adults and their significant others did not agree on many aspects of social and psychological function, with poor agreement in the following domains: anxious/depressed; withdrawn; thought; rule-breaking behavior; and internalizing symptoms. As expected, most significant disagreement was found for reporting of more internalizing behaviors. This may represent a risk for the young adults who are experiencing symptoms that are not identified by the outside world. If the young person has symptoms that rate closely to the clinically “at-risk” category and these are not identified and treated appropriately, he or she may be at risk of developing serious disorders, such as clinical mood disorders or anxiety disorders.
In contrast, there was better agreement for communication, as well as alcohol and drug-use symptoms, with good-to-excellent concordance between young people and their significant others in these domains. Of note, for these domains, external representations are much clearer than for internalizing symptoms described above.
Explanations for the concordance differences on the different psychosocial symptoms could be that the self-awareness of the young adult is impaired, because a difference in reporting psychosocial symptoms between self and significant other rating is often associated with poor self-awareness of the participant with the CTBI. 32 However, the young adults rate the more internalizing symptoms slightly higher then their significant other, more in keeping with the pattern observed in healthy young adults.
Predictors of psychosocial outcomes
Unexpectedly, injury-related and preinjury factors did not predict any young person's rating of the psychosocial outcomes. For significant other's rating, preinjury adaptive behavior predicted withdrawn and internalizing symptoms, with a trend to predict anxious/depressed and rule-breaking behaviors as well.
Because the young adults are now more independent and their CBTI is many years past, injury-related and preinjury factors might not have great influence, with more current factors and skills of the young adults potentially more salient. Alternatively, it may be that the young adults have accepted their psychological symptoms and have accommodated for them better, whereas their parents may continue to compare current function to preinjury function.
Limitations of this study
Because this is a prospective, longitudinal study, outcomes can be biased by attrition and sample bias; however, we were able to explore systematic differences from our original study, and these were few. Interestingly, reasons for nonparticipation reflected both good function; for example, they could not take part in the study because of work or study commitments or poor function (e.g., the young adult was going through a stressful period in life). More males with CTBI decided not to participate, which could confound the results. Males have the tendency to develop more externalizing symptoms, whereas females have an increased risk of developing more internalizing symptoms. 33 There were proportionally less participants with severe CTBI in the 16-year sample than the original; however, it is important to note that the proportion of severely injured individuals captured in the sample is still higher than expected. 34,35
Only preinjury and severity-related factors were included in the regression. As discussed previously, it is likely that in the transition into adulthood, other characteristics are more predictive of psychosocial outcomes after a CTBI. For future research investigating long-term outcomes, more current abilities should be considered as potential predictors. Including current partner or close friend report with the self and parent rating, may provide a more complete overview of the young adults psychosocial functioning.
Future directions and clinical implications
Because the young adults and their significant others have poor agreement on internalizing symptoms, these young adults may be at higher risk of developing more-severe internalizing symptoms or even disorders (such as mood or anxiety) if those closest to them do not identify these symptoms. Though injury-related and preinjury functioning (reported by the parent) did not predict their long-term psychosocial outcomes, preinjury adaptive behavior contributed to psychosocial outcomes reported by the significant other, with less-adaptive behavior predicting more psychological symptoms. It is important to characterize the relevance of different predictors at different stages after CTBI as the child develops throughout adolescence and into adulthood. If different factors are predicting psychosocial functioning during different stages in life, this information could help inform appropriate interventions and complement the current models. 4 –6
Conclusion
In summary, young adults and their significant other demonstrate agreement on presence and severity of observable behaviors and symptoms; however, they disagree regarding more subtle and internalized psychosocial symptoms, such as anxiety or depression, withdrawal, and thought problems.
Preinjury and injury-related factors did not contribute to the young adults report of psychosocial outcomes. It may be the case that current abilities, such as current cognitive and social functioning, might have a bigger impact at this stage in life. However, preinjury adaptive behavior seemed to be a good indicator of the long-term psychosocial outcomes rated by the significant other.
Footnotes
Acknowledgments
This work was funded through research grants awarded by the Victorian Neurotrauma Institute and the Murdoch Childrens Research Institute Critical Care and Neuroscience Theme and supported by the Victorian Government's Operational Infrastructure Scheme.
Author Disclosure Statement
No competing financial interests exist.
