JOURNAL OF NEUROTRAUMA 29:17171727 (June 10, 2012) Mary Ann Liebert, Inc. DOI: 10.1089/neu.2011.

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Reviews

Quality of Life in Children and Adolescents Post-TBI: A Systematic Review and Meta-Analysis
1 Ashley Di Battista, Cheryl Soo,2 Cathy Catroppa,3 and Vicki Anderson4

Abstract

Traumatic brain injury is (TBI) a leading cause of morbidity and mortality in children and adolescents in rstworld nations. Research from our team investigating adult survivors of pediatric TBI indicate that survivors of severe TBI are particularly vulnerable to global impairments, including poorer school performance, greater employment difculties, poor quality of life (QoL), and increased risk of mental health problems. Investigation into less observable consequences, including QoL, has emerged recently as an important outcome to assess in TBI populations. The status of QoL in pediatric TBI populations is mixed, likely a reection of the varied methodological and theoretical perspectives on QoL. AIM: This systematic study will clarify the nature of QoL in survivors of pediatric TBI, and identify predictors of QoL in this group. Of 419 articles identied, 11 studies met our inclusion criteria, and 9 were ultimately analyzed in this review. Four studies reported good QoL and 5 poor QoL. The difference between good and poor QoL was statistically signicant due to TBI severity [chisquare(3) = 77.38, p < 0.001], timing of outcome assessment [chi-square(1) = 565, p < 0.001], and denition of QoL [chi-square(3) = 34.73, p < 0.001]. The odds of having a poor QoL increased 5.8 times (RR = 1.21) when injuries were more severe. Good outcomes are contingent on milder injuries, proxy reporting, and early assessment, whereas poor outcomes reect more severe injuries and later assessment ( 6 months versus 1 year posttrauma, respectively).
Key words: adolescent; child; quality of life; traumatic brain injury

Introduction

raumatic brain injury (TBI) is a leading cause of morbidity and mortality in children and adolescents in rst-world nations (Yeates et al., 2002). A great deal of neuropsychological research has been conducted on observable outcomes following pediatric and adolescent TBI, focusing particularly on changes and decits in cognition and behavior, including executive functioning (attention and inhibition), academic achievement, learning, reading, language ability, and antisocial behaviors (Anderson et al., 2005; Catroppa et al., 2008; Ewing-Cobbs et al., 2004; Muscara et al., 2008). Research from our own team investigating adult survivors of pediatric TBI reports that survivors of severe TBI are particularly vulnerable to global impairments, including poorer school performance, greater employment difculties, poor quality of life (QoL), and increased risk of mental health

problems (Anderson et al., 2010). Investigation into less observable consequences, including QoL, has emerged in recent years as an important outcome to assess in TBI populations. Declines in health-related QoL have been documented in pediatric TBI groups, and recent research has found evidence of poor QoL in adult survivors of pediatric TBI (Cattelani et al., 1998). McCarthy and colleagues (2006) described declines in health-related QoL that were maintained over time in children following a TBI. Other recent data have suggested good health-related QoL in adult survivors (Anderson et al., 2011). It is possible that the conicting data on good versus poor OoL may be related to the denition of QoL used in different studies. QoL as a construct has many denitions, which generally adhere to one of three distinctive conceptualizations: (1) QoL as subjective well-being; (2) QoL as achievement; and (3) QoL as utility/health status (Dijkers, 2003,2004). Approaches

1 Psychology and Critical Care and Neurosciences Research, Murdoch Childrens Research Institute, and University of Melbourne, Melbourne, Victoria, Australia. 2 Psychology, Murdoch Childrens Research Institute, University of Melbourne, Melbourne, Victoria, Australia. 3 Psychology, Murdoch Childrens Research Institute, Royal Childrens Hospital and University of Melbourne, Melbourne, Victoria, Australia. 4 Psychology and Integrated Mental Health Program, Critical Care and Neurosciences Research, Murdoch Childrens Research Institute, Royal Childrens Hospital and University of Melbourne, Melbourne, Victoria, Australia.

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1718 employing subjective well-being dene QoL as an individual determination of life satisfaction, or the cognitive and emotional reactions to life stressors, which are inuenced by negative and positive affect, self-esteem, and morale (Djikers, 2004). QoL as achievement relates to the self as categorized against a standard of achievement (e.g., salary, possessions, relationships, and accomplishments; Djikers, 2004). QoL as utility/health status is also external to the individual, with judgments based on the utility of an individual to others, as judged by societys values, standards, and expectations (Dijkers, 2003). When QoL is used as an outcome, the overall value attached to QoL can vary dramatically depending on which of these three models is used. The overwhelming majority of available health-related QoL measures subscribe to the QoL as achievement paradigm. Examples of health-related QoL measures include the Medical Outcomes Short-Form Questionnaire (SF-36; TurnerBowker et al., 2002), General Health Questionnaire (GHQ; Goldberg, 1978), the Child Health Questionnaire (CHQ; Landgraf et al., 1996), and the Pediatric Quality of Life Inventory (PedsQL 4.0; Varni et al., 1999). Subjective well-being is variable and is inuenced by many factors, while achievement and/or utility/health status often categorize those with injury into a lower group a priori by merit of their health condition (e.g., the unhealthy individual achieves less and is of less utility compared to a healthy member of society). Achievement and utility ratings are often made with little regard for the internal subjective well-being of the individual and their perspective on their life. Differences in QoL outcome may also be attributable to methodological issues, such as sample characteristics, including severity of the TBI, and whether proxy reports (e.g., parent or physician) were used. Although health-related QoL and QoL dened as utility/ health status may be observed by proxy (through the achievement and functional ability construct paradigm), QoL may be regarded as poorer by familial proxies, as family members often experience more distress than the injured child following a TBI (Brooks, 1991). Families also suffer from QoL impairments of their own (Koskinen, 1998), and may describe their childs QoL as poorer as a result of their own reduced state. It is possible that reection and possible rumination of life before the trauma may bias the current perception of life for them and their family, resulting in poorer estimates of their childs QoL post-TBI. In recent years QoL has been highlighted as an important area of investigation in health policy and medical intervention, but the broad variability in methodology used to assess QoL (e.g., denitions of QoL, whether individuals or proxy reports are used, and at which time point in the recovery phase assessments are made) compromise the clarity of ndings across studies, especially in pediatric TBI. This systematic review will address these various methodological issues, with the goal of clarifying the denition of QoL in survivors of pediatric TBI. Specically, this review will assess: (1) the nature of QoL assessed in pediatric TBI research, examining the type of QoL assessed (e.g., denition), who is assessed (individual child versus proxy and TBI severity groups), and when they are assessed (outcome time points); (2) outcome (good versus poor) QoL across studies; (3) the effect of proxy reporting on outcome statistics; and (4) classication of good versus poor

DI BATTISTA ET AL. QoL when all of these variables are combined (e.g., denition of QoL, the sample assessed [proxy versus individual], TBI severity, and time of QoL assessment). Methods Literature search Studies were identied that provided information on QoL outcomes among survivors of pediatric TBI. Two databases (Medline and PsycINFO) were searched for articles published up to 2010 using the search criteria described below. PsycINFO (any eld). (quality of life) and (traumatic brain injury) and (adolescent or child or pediatric). Limits: English peer-reviewed journal; pediatric (birth12 years), neonatal (birth1 month), infancy (123 months), preschool (25 years), school age (612 years), adolescence (1317 years), human. MEDLINE (any eld). (quality of life) and (traumatic brain injury) and (adolescent or child or pediatric) limits: Clinical trial OR randomized controlled trial (RCT) OR case report OR clinical study OR journal article; English; human; all infant (birth to 23 months), all child (018 years). The literature review methodology was conducted in accordance with the Meta-Analysis of Observational Studies in Epidemiology (MOOSE) recommendations (Stroup et al., 2000). Detailed reporting of the search process is presented in Figure 1. No contact was made with authors. Bibliography searches did not yield additional resources. Study selection criteria Study selection for inclusion in the systematic review is provided in Figure 1. Any predictor variable was sufcient for initial inclusion, so long as the dependent variable included an assessment of QoL, as either a primary or secondary outcome. Two stages of processing were used to ensure appropriateness of study inclusion. The rst stage (stage 1 processing) assessed the articles according to information provided in the abstract, in accordance with the eligibility criteria listed below. Eligibility criteria: Stage 1 processing Articles were deemed eligible for further critical analysis based on satisfying the following criteria. 1. Human subjects 2. Pediatric and/or adolescent population 3. QoL as outcome measure (primary or secondary); this includes proxies (e.g., educational/vocational outcome) 4. TBI dened as closed head injury, open head injury, accidental injury 5. Clinical trial (RCT, case report, or clinical study) 6. Studies that include QoL as an outcome, but do not dene the age group in the abstract 7. Study cohort included children (018 years) included in the study as either child only or child + adult; in instances of child + adult, the data must be stratied by age group (child versus adult) 8. Brain injury dened as a closed or open TBI

CHILDHOOD QUALITY OF LIFE POST-TBI

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FIG. 1.

Details of the literature search process (RCT, randomized controlled trial). age groups (criterion 6). Studies were excluded from the nal systematic review if they did not satisfy either criterion 3 or 6 during stage 2 processing. Data abstraction Articles were reviewed independently by A.D. and veried by V.A. Data were abstracted into an access database, which was designed by A.D. The following data were abstracted: participant demographics (age range and mean; number and percentage of participants per group; number and percentage of male/female participants); TBI severity (Glasgow Coma Scale score, Abbreviated Injury Score, Injury Severity Score, other); study assessment time points; independent variables; dependent variables; denition of QoL (achievement; utility/health status; subjective well being; composite); QoL as primary versus secondary outcome and outcome analysis group (child/ adolescent, parent proxy, teacher proxy, doctor proxy); study main ndings; effect of independent variable on QoL; QoL as good versus bad; relationship of TBI severity to QoL. Statistical analysis Variable methods for data analysis and presentation were used in the various studies included in the systematic

9. Full abstract available, original article, peer reviewed, English-language publication Exclusion criteria: Stage 1 processing 1. Full abstract not available for review 2. Adult only 3. Adults after pediatric TBI (e.g., child/adolescent at injury, adult at assessment) 4. Abuse (QoL for abused children adds extra variables to QoL analysis) 5. Non-trauma-related TBI (e.g., tumor, hydrocephalus, general encephalopathy [includes bacterial and viral], stroke, birth-related trauma, genetic disorders affecting brain development and/or maturation [e.g., micro/ macroencephalopathy, prematurity, agenesis of corpus callosum]) 6. Validation study (e.g., measure or therapeutic program) 7. Case study A second stage of processing was conducted on all articles satisfying stage 1, for which additional information was required to determine eligibility with regard to eligibility criteria 3 and 6. Stage 2 processing served to determine and/or clarify the operational denitions of quality of life (criterion 3), and/or details regarding stratication of the sample into appropriate

1720 review. In order to summarize results, initial statistical analysis focused on pooling and generating means, medians, and percentages of total across studies (e.g., age and sex), and reporting those pooled means and percentages derived from those studies reporting the data of interest. Raw data and percentages of the total number of studies and the total number of children with each level of TBI severity were calculated. Microsoft Access, Microsoft Excel, and SPSS software were used to perform the analyses. Initial statistical analysis generated descriptive data of both the study variables and the participant characteristics, pooled across studies. In order to determine the effect of variables of interest on QoL outcome, all variables of interest (TBI severity, proxy versus self assessment, QoL denition, and age at assessment) had pooled relative risks (RR) and odds ratios calculated, where appropriate. Chi-square and Fishers exact test were employed where applicable. Statistical heterogeneity was calculated using the chi-square test. QoL outcome was dichotomized into good versus poor, based on the inherent classications within each measurement scoring system. Results Overview The results of the selection process are provided in Figure 1. The initial search produced 419 citations. Stage 2 processing yielded 93 potentially relevant citations. Of these, 11 studies met our inclusion criteria and were analyzed in this review (Aitken et al., 2009; Erickson et al., 2010; Fay et al., 2009; Limond et al., 2009; McCarthy et al., 2006; Mealings and Douglas, 2010; Meuli et al., 1991; Petersen et al., 2008; Souza et al., 2007; Taylor et al., 2001; Tilford et al., 2007). Table 1 describes the characteristics of the included studies, and Table 2 shows QoL measurement characteristics. Patient characteristics and TBI severity A total of 968 participants (parents and children/adolescents with TBI) were assessed across all studies. Of these, 123 participants (12.7%) represent self-reported answers from children and/or adolescents. Not all studies reported demographics, but of those that did 57.3% were male (Taylor et al., 2001 was excluded from the analysis), and had an average age of 11.06 years (range 5 months to 18 years at assessment; Fay et al., 2009 was excluded from the analysis). One study (Meuli et al., 1991) did not report severity characteristics of their sample. Across the remaining 10 studies, 266 (28.4%) children were classied as mild TBI, 241 (25.7%) as moderate TBI, 108 (11.6%) as moderate-to-severe TBI, and 313 (33.4%) as severe TBI. TBI severity was classied using the Glasgow Coma Scale (72.7%), Abbreviated Injury Scale (18.2%), or other means (9.1%). Denition and measurement of quality of life The majority of studies (n = 8) assessed QoL as a primary outcome. QoL was most commonly dened as achievement (n = 7). A composite denition of QoL, reecting no a priori denition or direct measurement of QoL, was used solely in one of the studies, and as an adjunct to an achievement denition in one study. Composite QoL was seen as a global outcome, comprised of other outcome benchmarks (e.g., so-

DI BATTISTA ET AL. cial skills). One study assessed health status, and one included subjective well-being. Proxy-only measurement of QoL was used in seven studies, with one using a proxy + child measurement. One study measured child-only QoL. Assessment time points Times of assessment of QoL ranged from 3 months to 5 years post-TBI. Two studies (Aitken et al., 2009; McCarthy et al., 2006) included baseline assessments conducted within 3 weeks of injury (median 16 days). Favorable versus unfavorable quality of life outcome Four studies identied a good QoL outcome following pediatric TBI, and ve dened QoL as poor. Two studies did not assess QoL outcome on a scale amenable to good versus poor quantication, and were excluded from these and further analyses (Aitken et al., 2009; Mealings and Douglas, 2010). Of those studies outlining a good QoL outcome, three studies dened QoL as achievement, and one as health status (quality-adjusted life years). All four of the good-outcome assessments were proxy reports (2 by parents, and 2 by physician proxy). Upon further renement of the good-outcome operational denition, the study by Tilford and associates (2007) was removed from the analyses, as their good was borderline moderate (quality of well-being mean score = 0.58; range - 1 to 0.9). With the Tilford study removed from the analyses, all remaining studies used achievement to dene QoL, and all used proxy reporting (50% of studies used parental proxy, and 50% of studies used physician proxy). Of the poor QoL outcomes, three used an achievement-only denition of QoL, and two combined achievement + other as their denition of QoL (one study used achievement + subjective well being, and one study used achievement + composite). Of those using achievement-only denitions, all assessed QoL via parent-proxy. Of the remaining two studies using achievement + other, one study assessed QoL via parent proxy, and one included child self-report measurement techniques. Predicting QoL: The relationship between TBI severity, proxy measurements, time of assessment, and denition of QoL The difference between good and poor QoL outcome was statistically signicant as a result of TBI severity [chisquare(3) = 77.38, p < 0.001], the timing of outcome assessment [chi-square(1) = 565, p < 0.001], and denition of QoL used [chi-square(3) = 34.73, p < 0.001]. The difference between use of proxy assessment alone (either parent or physician) versus using a combined assessment involving proxy + individual assessments was not statistically signicant [chi-square(2) = 2.53, p = 0.28]. The odds of having a poor QoL outcome on assessment increased by 5.8 times (RR = 1.21) when injuries were of greater severity than when they were mild TBI. When an achievement-based denition of QoL was used, it was ve times more likely to have a poor QoL outcome compared to other denitions of QoL. Likelihood of poor QoL increased by 7.9 times when proxy assessments (either parent or physician)

Table 1. Study Characteristics of the Included Articles (n = 11)

Reference Cohort; prospective Child health and health care needs Caregiver burden AIS Moderate (30.1%); moderate severe: (24.8%); severe (45%)

Age range; mean (SD); [median] Study type Independent variable Dependent variable Study main ndings TBI severity (% total)

Sample size (% male)

TBI severity index

Assessment time points Baseline within 3 weeks, median 16 days, 3 months and 12 months

Aitken et al., 2009

515 years; or 302 (68) 10.4 years (NR)

Erickson et al., 2010

918 years; or 20 (65) 13.33 (2.6) years

TBI severity Case control; and age observational; prospective

HRQoL: child versus adult

Moderatesevere (100%)

GCS

Minimum of 6 months post-injury

1721 TBI severity Cohort; observational; prospective HRQoL Case series; Individual observational experiences in return to school School success

McCarthy et al., 2006

515 years; or 330 (69) 10.42 years (NR)

Mild (56.1%); AIS/ NISS moderate (31.2%); severe (12.7)

Baseline, 3 and 12 months

Mealings 1317 years; or 3 (100) and 14.67 years Douglas, (NR) 2010

Caregivers more likely to report family burden problems when child functioning is poorer and health care needs are unmet. Improved identication and provision of services is a potentially modiable factor that may decrease family burden after pediatric traumatic brain injury Children who have suffered moderatesevere TBI experience relatively poor HRQoL, particularly in the school domain. Limited convergence between informants suggests that children and parents perceive HRQoL differently, with parents reporting lower HRQoL Moderate or severe TBI resulted in measurable declines in childrens HRQoL after injury. Injuryrelated factors impacted HRQoL more than patient and family characteristics during the rst year after injury Three key themes emerged from the interviews: the adolescent students sense of self, changes the students noted; and supports the students identied. A tentative model illustrating the relationship between these areas was developed. It is anticipated that this model will assist clinicians and educators to develop a holistic picture of a students school participation from transition to ongoing school life Severe (100%) GCS

Minimum 6 months postschool return

(continued)

Table 1. (Continued)

Reference Cohort; Post-traumatic observational; neurological retrospective ndings GOS at 7 years, child versus adult

Age range; mean (SD); [median] Study type Othera Independent variable Dependent variable Study main ndings TBI severity (% total)

Sample size (% male)

TBI severity index

Assessment time points Mean: 7 years postinjury; range: 2 months to 17.5 years

Meuli et al., 1991

5 months to 15.5 years; or 7.9 years (NR)

31 (67)

1722 Severity Cohort; and observational; demographics Prospective (time since injury) QoL Case control; prospective Patient and parent correlates of QoL QoL

Petersen et al., 2008

59 (50.8) 10.0 years (NR) at assessment; or 9.05 years (3.78) at injury

GCS

Immediately post-TBI (T0); 3month interview (T1) GCS Mean: 4.1 (2.3) years postinjury; range 19 years postinjury

Souza et al., 2007

711 years at 23 (57) assessment; or 10.7 years (1.9) 311 years at injury

NR 28 patients had a good recovery; moderate disability, and severe disability were found in patient one each. Our results demonstrate that the long-term outcome in children with extradural hematoma is far better than that of adults regarding survival as well as quality of life. The causes may be minor traumas with fewer associated lesions and presentation with typical clinical ndings, and therefore early diagnosis and treatment is possible Mild Mild TBI resulted in no (100%) decline in the childrens health outcome after injury. The cognitive screening approach proved itself to be a useful instrument for routine clinical care Severe Children with TBI report (100%) signicantly reduced QoL compared to a control group in the physical, psychological, cognitive, and total score dimensions. However, TBI children with average academic performance (65%) obtained the same QoL scores as the control group

(continued)

Table 1. (Continued)

Reference Prospective; RCT Early decompressive craniectomy Functional outcome and control of ICP

Age range; mean (SD); [median] Study type GCS Independent variable Dependent variable Study main ndings TBI severity (% total)

Sample size (% male)

TBI severity index

Assessment time points 6 months

Taylor, et al., 2001

13.6176.4 mo (1.114.7 years); or [120.9 mo]

13 (NR)

1723 Concurrent cohort; prospective Severity of TBI

Fay et al., 2009

612 years at 77 (68 Moderate injury: TBI; 81 moderate severe TBI) TBI: 9.49 (1.86) years; or severe TBI 9.77 (2.18) years

When children with TBI and Moderate severe sustained intracranial (100%) hypertension are treated with a combination of very early decompressive craniectomy and conventional medical management, it is more likely that ICP will be reduced, fewer episodes of intracranial hypertension will occur, and functional outcome and quality of life may be better than in children treated with medical management alone. Very early decompressive craniectomy may be indicated in the treatment of TBI Moderate Severe TBI predicted an Functional decit: (51.9%); increased likelihood of neuropsychological, severe persistent decits in all behavioral, (48.1%) outcome domains, as well academic, adaptive as deterioration in behavioral functioning and improvement in neuropsychological, adaptive, and academic functioning. Severe TBI also predicted a greater total number of functional decits across domains at each occasion. However, many children with severe TBI showed no decits from 6 months to 4 years postinjury in one or more outcome domains

GCS

6 months, 1 and 4 years

(continued)

Table 1. (Continued)

Reference Observational cohort; prospective Treatment intensity Quality of well-being (QWB)

Age range; mean (SD); [median] Study type Independent variable Dependent variable Study main ndings

Sample size (% male)

TBI severity (% total)

TBI severity index GCS

Assessment time points 3 and 6 months

Tilford et al., 2007

518 years

67 (62.5) at 3 months; 76 (58.5) at 6 months

1724 Cohort, retrospective Demographic and injury characteristics HRQoL and Service Use

Limond et al., 2009

43 (NR) 113 years (injury); or 516 years (assessment)

The ndings support the use Severe (100%) of the QWB score with parental reports to measure preference-weighted health outcomes of children following a TBI. Information from the study can be used in economic evaluations of interventions to prevent or treat TBIs in children Mild (72%), Parents frequently reported moderate poor quality of life and (16%), cognitive, emotional, and severe behavioral problems in their children following TBI. (12%) These preliminary ndings indicate that children after TBI are at risk of developing persistent clinical problems and require follow-up beyond the acute period of recovery

GCS

15 years postinjury; 2.6 (3.2) years

Classic signs as severity index. AIS, Abbreviated Injury Score; HRQoL, health-related quality of life; QoL, quality of life; NISS, New Injury Severity Score; GCS, Glasgow Coma Scale; QoL, quality of Life; RCT, randomized controlled trial; ICP, intracranial pressure; TBI, traumatic brain injury; NR, not reported.

CHILDHOOD QUALITY OF LIFE POST-TBI Table 2. Quality of Life Measurement Characteristics Reference Aitken et al., 2009 Erickson et al., 2010 McCarthy et al., 2006 Mealings and Douglas, 2010 Meuli et al., 1991 Petersen et al., 2008 Souza et al., 2007 Taylor et al., 2001 Fay et al., 2009 Tilford et al., 2007 Limond et al., 2009
a

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QoL outcome: Primary versus secondary Secondary Primary Primary Secondary Secondary Primary Primary Primary Primary Primary Primary

Assessment tool Peds QL Peds QL Peds QL Composite/inference GOS

QoL dened as Achievement Achievement Achievement Composite

QoL measured by Parental proxy Parental proxy + self-report Parental proxy Self-report Physician proxy Parental proxy Parental proxy + self-report Physician Proxy Self-report (child-assessed); physician proxy Parental proxy Parental proxy

Composite, achievement KINDL, parent Achievement Achievement, SARAH QoL for children subjective and adolescents + interview well being with parents HSU Achievement Composite:a neuropsychological, Composite, behavioral, academic function achievement Quality of well-being Health status (quality-adjusted life years) Peds QL Achievement

Fay et al., 2009: Neuropsychological tests: WISC III, CELF-R, CNT, BNT, COWAT, CVLT, CPT-3, underlining test (subtests 2, 4, and 9), grooved pegboard. Behavioral test: CBCL. Academic tests: Word identication, writing sample, calculation subtest of WJT-A-R; adaptive: VABS. Composite indicates no direct measurement; QoL inferred from other outcome measurements used as a global composite. KINDL, German Generic Quality of Life Instrument for Children (Ravens-Sieberer and Bullinger, 1998); GOS, Glasgow Outcome Scale (Teasdale and Jennett, 1974); HSU, Health State Utility Index (Torrance et al., 1996); Peds QL, Pediatric Quality of Life Inventory (McCarthy et al., 2005); SARAH, SARAH Network QoL Questionnaire (Souza et al., 2007).

were used. Odds ratios and relative risk indices could not be calculated for timing of QoL assessment ( 6 months versus 1 year) because of zero cells. Key factors involved in good QoL outcome All studies that reported a good QoL on outcome relied solely on proxy-reported, achievement-based QoL denitions. Good QoL was identied at the acute assessment time point ( 6 months post-injury). When QoL was assessed at 3 and 6 months post-injury, only good QoL was reported across all studies. Of those, three studies assessed mild TBI, and one moderate-to-severe TBI. Severe TBI was not assessed in the studies reporting a good QoL on outcome. Key factors involved in poor QoL outcomes Poor QoL outcomes included a mix of achievement-only (n = 3) and achievement + other (subjective well being and composite) denitions. The achievement-only studies (n = 3) relied solely on parental proxy reports, while the achievement + other study included child self-reports. Poor QoL on outcome was related to a later assessment time point, with all poor QoL on outcome found when QoL was assessed a minimum of 1 year post-injury (range 14.2 years; mean 3.2 years). The TBI severity assessed in studies reporting poor QoL was variable, including mild (40.2%), moderate (32.4%), moderate-to-severe (4.3%), and severe (22.3%) TBI groups. Discussion Overall the ndings suggest that QoL after pediatric TBI is poor. This statement, however, must be contextualized by the

available data, which indicate that poor outcomes slightly outnumber good outcomes in the data reviewed (56% of the studies reported poor QoL). Predictors of poor QoL include more severe TBI and assessments conducted 1 year or later post-injury. When considering severity of injury as a predictor of QoL, it is important to acknowledge the breadth of impact it may have across multiple domains, which may either directly or indirectly affect QoL. These additional severity-related variables include: (1) longer recovery time and the need for rehabilitation; (2) greater disruption of family, social, and school life; (3) greater disability in multiple domains, including language, mobility decits, and epilepsy; and (4) possible disruption of friendship networks due to reduced cognitive and social skills. Each of these factors could impact the overall QoL following brain injury, and because greater severity of injury is more likely to be associated with a host of these problems, it is reasonable to conclude that high severity would have a greater effect on QoL than a milder injury. Acute and subacute assessments may generate an articial environment that is poorly relatable to overall QoL in the realworld setting. Many survivors of TBI are involved in a focused rehabilitation, recovery, and re-integration program focusing on getting them back to normal. Assessments completed at this time may reect ongoing concerns regarding issues in the rehabilitation setting, and exclude components relevant to ongoing life experiences for the adolescent, specically re-integration into school and social networks. There are few data available on patient-reported QoL postpediatric TBI, but in the few studies available (Erickson et al., 2010; Fay et al., 2009; Mealings and Douglas, 2010; Souza et al., 2007), poor QoL has been reported. It is possible that the over-reliance on proxy achievement-based QoL is biasing the literature towards a poorer outcome; indeed, studies

1726 including mild brain injuries and early assessment time points have found good QoL. By contrast, when more severe TBI and later assessment time points are used, QoL is rated as poor. The time points at which assessments of QoL are made is an important variable to consider when assessing the accuracy and validity of the QoL outcome marker. Our systematic review highlights that no poor outcomes were reported in the rst 6 months after injury, and in contrast, only poor outcomes were reported at 1 year or later post-trauma. All of the good QoL data are 100% reliant on proxy reporting; it may be possible that proxies (e.g., parents or physicians) have not had enough time to properly assess the re-integration of the child/ adolescent into their usual real-life world (e.g., return to school, family roles, and friendships). QoL is not stable over time. It is important to contextualize the nature of the QoL rating in time, as it relates to the stage of their post-injury process. It is possible that assessments done too early in the post-injury period may reect an unclear picture of the overall impact of the trauma on families and individuals, as neither have yet been exposed to the effects of real-life variables. This review highlights the nding that longer-term outcomes are related to poor QoL. It is possible that these later outcome assessments reect the impact of time, rehabilitation, and difculties reintegrating into the academic and social spheres. Limitations The review itself may be limited by the nature of the search strategies and corresponding target words used across databases. Although every attempt was made to ensure that articles relating to the construct of QoL were included, it is possible that some were missed as a result of efciency and the breadth of database searches. Searches were limited to studies published before 2010, and this may have limited the overall number and type of studies available for review at the time of publication. Future directions The overwhelming majority of studies assessing QoL post TBI use an achievement-based QoL denition. It would be informative for future studies to incorporate alterative denitions of QoL to explore the effect of injury on outcome when alternate denitions are used. Additionally, few studies involve self-reports. The perspective of the individual patient and his or her experiences post-TBI would be extremely benecial, especially as it relates to the argument over the impact of preserved versus altered self-awareness. Methodological issues surrounding denition and time course of assessment should be controlled for in future studies, perhaps by using alternate denitions, self-reports, and longer-term outcome assessments. Ideally, repeated assessments over time would benet not only the literature on QoL post-TBI, but would also help to identify changes in circumstances, utility and support services used, and overall conceptualizationfor the individual and the familyof QoL throughout development. Conclusions With systematic examination of the available QoL postpediatric TBI literature, patterns and predictors of QoL be-

DI BATTISTA ET AL. come evident: QoL is most often dened as achievementbased, health-related QoL. Good outcomes are contingent upon milder injuries, proxy reports, and early assessment time points ( 6 months post-injury). Poor outcomes are attributable to more severe injuries and later assessment time points ( 1 year post-trauma). Author Disclosure Statement No competing nancial interests exist. References
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Address correspondence to: Ashley Di Battista, M.A. Psych (Brain, Behaviour, Cog Sci) Murdoch Childrens Research Institute Department of Child Neuropsychology, 4 West Flemington Road, Parkville, Victoria, Australia 3052 E-mail: ashley.dibattista@mcri.edu.au

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