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 2S:  Supplement. Rehabilitation for Traumatic Brain Injury in Children and Adolescents: Evidence Report/Technology Assessment Number 2, Supplement

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THIS EVIDENCE REPORT IS OUTDATED AND IS NO LONGER VIEWED AS GUIDANCE FOR CURRENT MEDICAL PRACTICE. IT IS MAINTAINED FOR ARCHIVAL PURPOSES ONLY.

Prepared for: Agency for Health Care Policy and Research

Department of Health and Human Services
2101 East Jefferson Street
Rockville, MD 20852
http://www.ahcpr.gov

Contract No. 290-97-0018

Prepared by:
Oregon Health Sciences University, Portland, OR
Nancy Carney, PhD, Principal Investigator
Hugo du Coudray, PhD
Cynthia Davis-O'Reilly, BS
Melanie Zimmer-Gembeck, PhD
N. Clay Mann, PhD
Kathryn Pyle Krages, AMLS, MA
Mark Helfand, MD, EPC Director

AHCPR Publication No. 00-E001

September 1999

THIS EVIDENCE REPORT IS OUTDATED AND IS NO LONGER VIEWED AS GUIDANCE FOR CURRENT MEDICAL PRACTICE. IT IS MAINTAINED FOR ARCHIVAL PURPOSES ONLY.

Prepared for: Agency for Health Care Policy and Research

Department of Health and Human Services
2101 East Jefferson Street
Rockville, MD 20852
http://www.ahcpr.gov

Contract No. 290-97-0018

Prepared by:
Oregon Health Sciences University, Portland, OR
Nancy Carney, PhD, Principal Investigator
Hugo du Coudray, PhD
Cynthia Davis-O'Reilly, BS
Melanie Zimmer-Gembeck, PhD
N. Clay Mann, PhD
Kathryn Pyle Krages, AMLS, MA
Mark Helfand, MD, EPC Director

AHCPR Publication No. 00-E001

September 1999

Preface

The Agency for Health Care Policy and Research (AHCPR), through its Evidence-based Practice Centers (EPCs), sponsors the development of evidence reports and technology assessments to assist public- and private-sector organizations in their efforts to improve the quality of health care in the United States. The reports and assessments provide organizations with comprehensive, science-based information on common, costly medical conditions and new health care technologies. The EPCs systematically review the relevant scientific literature on topics assigned to them by AHCPR and conduct additional analyses when appropriate prior to developing their reports and assessments.

To bring the broadest range of experts into the development of evidence reports and health technology assessments, AHCPR encourages the EPCs to form partnerships and enter into collaborations with other medical and research organizations. The EPCs work with these partner organizations to ensure that the evidence reports and technology assessments they produce will become building blocks for health care quality improvement projects throughout the nation. The reports undergo peer review prior to their release.

AHCPR expects that the EPC evidence reports and technology assessments will inform individual health plans, providers, and purchasers as well as the health care system as a whole by providing important information to help improve health care quality.

We welcome written comments on this evidence report. They may be sent to: Director, Center for Practice and Technology Assessment, Agency for Health Care Policy and Research, 6010 Executive Blvd., Suite 300, Rockville, MD 20852.

Douglas B. Kamerow, MDJohn M. Eisenberg, MD
Director, Center for PracticeAdministrator
and Technology AssessmentAgency for Health Care Policy and Research
Agency for Health Care Policy and Research
The authors of this report are responsible for its content. Statements in the report should not be construed as endorsement by the Agency for Health Care Policy and Research or the U.S. Department of Health and Human Services of a particular drug, device, test, treatment, or other clinical service.

Acknowledgments

We thank the Brain Injury Support Group of Portland, Randall Chesnut, MD, and Mark Ylvisaker, PhD, for their help in preparing this report.

Structured Abstract

Objectives. The goal was to conduct a systematic review of the literature about child and adolescent traumatic brain injury (TBI) oriented around key research questions and to create a tool that would be used in future evidence-based investigations about recovery from TBI in this population. A matrix was prepared to organize research according to the developmental dimensions and age categories addressed by studies. With the assistance of technical experts, key questions were formulated about (1) the effectiveness of early, intensive rehabilitation; (2) referral of children with TBI to special education; (3) the effectiveness of special education for children with TBI; (4) the effect of developmental phase on prediction and outcome; and (5) the effect of support for families. Patient populations, interventions, and outcome measures were defined, and literature was compiled and categorized from seven databases -- medical, educational, and psychological. The strongest studies that contained data about the key questions were reviewed, and an evidence table template was created for use in future comprehensive studies. In the evidence report, methods are proposed for conducting research and evaluating data about children and adolescents with TBI that can incorporate and account for individual differences and the influence of growth and change on the recovery process.

Search Strategy. A search was conducted of MEDLINE (1976-1998), CINAHL (1982-1998), HealthSTAR 1995-1998), PsychINFO (1982-1998), ERIC (1996-1998), Current Contents (1998), and the Cochrane Library, supplemented by reference lists of review articles, book chapter bibliographies, and the advice of peers.

Results. The initial search strategy yielded 1,464 abstracts of potentially relevant studies. All studies about child or adolescent TBI -- from acute management through long-term rehabilitation -- were categorized by study design, deficit, intervention, outcome, and predictors, and they were included in the bibliography. Three-hundred fifty-six articles identified from electronic databases and manual searches relevant to one of the five research questions were retrieved and read. Studies containing data were evaluated by a member of the research team. One study was found for question 1; 15 studies were found for question 2; 8 studies were found for question 3; 61 studies were found for question 4; and 3 studies were found for question 5 (88 total). The remaining 268 articles described programs or interventions without providing patient or student data.

No randomized controlled trials and very few comparative studies were found that addressed the key research questions. One study suggests that the early introduction of physiatry during the acute care phase of treatment aids in detecting musculoskeletal trauma that may otherwise be missed. No literature was found that accurately documents rates of referral for children with TBI to special services. Although the available single-subject studies suggest beneficial effects of special school programs, methodologic flaws in the one comparative study render its findings inconclusive. A large body of literature documents the utility of patients' developmental information in predicting deficits and outcomes. Correlational studies associate family support with better family functioning.

In general, studies have not been conducted with designs capable of providing evidence on the effectiveness of interventions for children and adolescents with TBI. The published literature for this topic is primarily exploratory. It provides descriptions of programs that are widely accepted, including logical approaches to treatment that have not been validated either through experimental design or in carefully controlled observational studies. The clinical experience represented in the published literature that has guided the design of intervention programs should generate the important hypotheses for controlled studies.

This document is in the public domain and may be used and reprinted without permission.

Suggested citation

Carney N, du Coudray H, Davis-O'Reilly C, et al. Rehabilitation for traumatic brain injury in children and adolescents. Evidence report no. 2, supplement (Contract 290-97-0018 to Oregon Health Sciences University). Rockville, MD: Agency for Health Care Policy and Research. September 1999.

Summary

Introduction

The estimated incidence of traumatic brain injury (TBI) doubles between the ages of 5 and 14 years and peaks for both males and females during adolescence and early adulthood to approximately 250 per 100,000. Children and adolescents are more likely than adults to survive following TBI. Because the lives of most survivors of moderate to severe TBI involve chronic, life-long disabilities with varying degrees of dependence, the cost in individual suffering, family burden, and financial burden to society is greater for those who have more years to live.

Limitations in bathing, dressing, and walking are observed in between 50 percent and 90 percent of children with TBI with multiple functional deficits, depending upon and directly proportional to the number of functional deficits. For children with four or more functional deficits, 75 percent have impairments in self-feeding, cognition, and behavior; there also may be impairments in speech (67 percent), vision (29 percent), and hearing (16 percent).

In the 18th Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, the number of children receiving services because of TBI for the 1994 to 1995 school year was 7,188 students aged 6 to 21 years. The gap between this number and reports of incidence of TBI among children and adolescents suggests that many children with TBI may be misidentified or unidentified. The concern is that the problems of these children may go unrecognized, or they may be treated with methods that were developed for other pathologies but are inappropriate to the special needs of children with TBI.

Although many children with TBI may transition to inpatient rehabilitation and some to long-term care facilities, the goal, when possible, is return to school. Laws requiring schools to provide for the special education needs of students define schools as the best place for ongoing rehabilitation of most children with TBI. Ideally, a child identified with TBI would be evaluated for special needs and provided with an individualized education program (IEP) designed to meet those needs. However, the content and quality of the program would depend on the resources available in the school and varies across States and regions.

Characteristics such as social inappropriateness, lack of awareness, and decreased control of attention, memory, and strategic thinking may result in difficulties when integrating a child with TBI into mainstream educational settings. Some States provide training for public school teachers that is focused on the special needs of children with TBI. Some programs serve both children who live at home and those who require residential treatment in a specialized educational/neurorehabilitative setting. Choice of model (mainstream vs. separate) may be dictated by the severity of deficits and functional capabilities of the child; it also may be influenced by the availability of resources within the community, family choice, or the local or regional philosophy of inclusive vs. segregated education of students with disabilities.

Background

In 1997 the Evidence-based Practice Center (EPC) at Oregon Health Sciences University (OHSU) contracted with the Agency for Health Care Policy and Research (AHCPR) to produce an evidence report on rehabilitation from TBI in adults. At the conclusion of the project, AHCPR requested that the OHSU EPC conduct a survey of the literature regarding child and adolescent TBI rehabilitation. Specific objectives for the project were to:

  • 1

    Identify studies of all phases of rehabilitation for child/adolescent TBI from a variety of bibliographic databases and compile a data set of studies ranging from acute care through in- and outpatient rehabilitation, educational reintegration, and long-term functional status.

  • 2

    Document the process of applying search strategies to the literature, including where the strategies failed and succeeded, producing a road map to this body of literature for use in future investigations.

  • 3

    Categorize the retrieved studies and produce a bibliography.

  • 4

    Working with a panel of technical experts, including a parent of a child with TBI, define key questions regarding child and adolescent TBI rehabilitation and use them to search the database to locate studies with evidence for effectiveness of interventions.

  • 5

    Summarize the studies relevant to each key question.

  • 6

    Construct a template for evidence tables to address the key questions by specifying important variables to define the columns in the tables.

  • 7

    Propose a research agenda for rehabilitation of child and adolescent TBI.

The main goal was to create a template for a comprehensive, systematic review of existing literature. A secondary goal was to describe research projects capable of closing information gaps revealed by a survey of the literature.

Conceptual Model for Rehabilitation of TBI in Children and Adolescents

Children are naturally changing and developing both before and after they are injured, including while they are receiving rehabilitative interventions. Therefore, in order to examine the effects of rehabilitation, information is required on normal child development. Longitudinal studies that compare development of injured and uninjured children also are needed. To be useful the studies must assess capabilities of children at different ages and determine individual variation in developmental outcomes of children with different injuries and in different social environments.

The best organizing principle for reviewing the literature on child and adolescent TBI comes from the modern study of human development and, in particular, the metatheoretical approach known as Life-Span Developmental Psychology. Simply stated, any research question about child and adolescent TBI must be oriented to the relevant developmental category and age group. Also, subsets of information within a research question must address developmental phases. For example, when describing the sample of a particular study, age at injury, age at evaluation, and time since injury, as well as the developmental implications of those age-related landmarks, all should be identified.

Key Questions

Two panels of experts, one local and one national, worked with the research team to identify the following key questions in the rehabilitation and survivor phases of recovery from TBI for children and adolescents. For each question, they provided a rationale for asking the question, as well as definitions, target populations, and outcome measures. The questions are:

  • 1

    Does the application of early, intensive medical rehabilitation in the acute care hospital improve outcomes for children with TBI?

  • 2

    Among children diagnosed with TBI, how many are provided with special education that is designed to accommodate the needs of TBI?

  • 3

    Do children with TBI who receive special education designed to accommodate the needs of TBI have better outcomes than those who are provided with special education that is not so designed and those who do not receive special education?

  • 4

    For children who have sustained brain injury, does the early identification of (a) the child's developmental stage at the time of injury; (b) the child's developmental stage at the time of assessment; and (c) the extent to which the injury has arrested the child's normal developmental process increase the ability to predict when the child will exhibit the needs, behaviors, and problems resulting from brain injury?

  • 5

    Does the provision of support to families of children with brain injury enhance the family's ability to cope and reduce the burden of illness?

Methods

Literature was searched using MEDLINE (1976-1998), CINAHL (1982-1998), HealthSTAR (1995-1998), PsychINFO (1982-1998), ERIC (1996-1998), the Cochrane Library, and Current Contents (1998), and 1,464 potential references were identified. Abstracts of these references were reviewed independently by two members of the research team, who applied predefined, broad eligibility criteria. The process resulted in 376 studies about TBI in children or adolescents. These studies were coded and categorized according to study design, deficit, intervention, outcomes, and predictors and placed in a bibliography in both written and electronic form for use in future investigations. The studies were read a second time, and 236 were identified that were relevant to one or more of the five key questions. An additional 120 articles were added from reference lists, book chapter bibliographies, and the advice of peers. A total of 356 full-text articles were retrieved and read, and those studies containing data relevant to one of the key questions were identified. One study was found for question 1, 15 for question 2, 8 for question 3, 61 for question 4, and 3 for question 5 (88 total). The remaining 268 articles described programs or interventions without providing patient or student data.

Findings

Effectiveness of Early Rehabilitation

There were no randomized controlled trials and no comparative studies that investigated the efficacy of early, intensive rehabilitation for children or adolescents. Inferences about this intervention for children have been drawn from studies with adult samples. One prospective, uncontrolled observational study and two retrospective studies were reviewed for indirect information about the effects of the intervention. Of these, one study suggests that early, thorough physical and occupational therapy evaluations that include bone scans may serve to identify otherwise undetected musculoskeletal trauma and heterotopic ossification, indirectly arguing for early physiatry intervention. Authors suggested that the difficulties in communication unique to TBI warrant special methods for detecting physical trauma in people with TBI.

Use of Special Education for Children Diagnosed with TBI

This question has two parts: (1) How many children with TBI receive special education services? and (2) Are the programs and services they receive delivered by people who understand and are able to manage TBI in children? Only the first part of this question could be addressed, since no studies were found on special education programs delivered by personnel who have been trained in caring for and educating students with TBI.

Three retrospective studies and one cross-sectional State-wide study suggest that between 9 percent and 38 percent of students with identified brain injury receive referral to special education. However, since no evaluation of the students with TBI who did not receive special education was provided, it is not known whether these students needed special services, or how many were functioning well without services. Therefore, it is not possible to determine whether these reported referral rates indicate adequate referral, under-referral, or over-referral. The important question is whether the child with TBI who needs special services receives them. The answer to that question depends on being able to measure independently the need for or potential benefit from special education and then determining the proportion of children who could benefit and are actually referred. These data were not found in the published literature.

Outcomes of Special Education

One nonrandomized comparative study, one small case series, one survey, and five case studies provide limited data about the effects of special education programs for children with TBI, with varied results. No significant treatment effect was found in the comparative study; however, the comparison group performed significantly better than the treatment group at pretest on neuropsychological and intelligence tests and on adaptive and behavioral measures, suggesting that they were not as impaired as the treatment group from the beginning. In the case series, there was significant improvement from pre- to posttreatment on one of nine laboratory-based neuropsychological tests. In the five case studies, all patients showed improvement on measures taken during intervention when compared with those taken at pretreatment. However, because these studies are uncontrolled, the effect cannot be generalized to a larger population of children.

Predicting Needs, Behaviors, and Problems Associated with TBI

Sixty-one studies reporting data related to predictability of deficits based on developmental issues in child and adolescent TBI were found: 51 were prospective; 4 were population-based; 13 were multicenter; and 12 studies evaluated patients for 3 or more years. Because of the diversity of topics in this question and the large number of citations found, a system was developed for rating the overall quality of each article on an ordinal scale; the articles with the highest ratings were selected for review. Criteria for rating quality were (1) number of developmental categories included in the study, (2) study length, (3) design, (4) setting, (5) sample selection method, (6) age range in sample at time of measurement, (7) span of developmental stages covered in age range, (8) comparison method, (9) specification of injury severity, (10) specification of location of injury, (11) span of developmental stages covered by range of age at injury, (12) time from injury to assessment, (13) followup, and (14) analysis methods.

Seven studies that had the highest methodological scores using this system were reviewed. One cross-sectional/longitudinal evaluation of language acquisition demonstrates a predictable pattern of delays and deficits in language acquisition for children up to the age of 3 years when compared with uninjured children. Two additional cross-sectional studies establish the base rate measures of brain growth at each stage of development that are necessary to detect the developmental effects of injury. Two comparative studies revealed the presence of subtle, hidden deficits in cases of apparently normal performance in pediatric TBI with focal brain damage. Two studies used the analytic method of growth modeling and the use of growth trajectories in their research. By analyzing individual growth curves, researchers were able to control for differences in the ages of the children. They discovered systematic, nonlinear changes in growth that were strongly related to injury variables.

Effects of Providing Support Services to Families

There were no randomized controlled trials that compared the effects of support to families with no support. One trial using random assignment evaluated the differential effects of two forms of support to families, and two prospective studies contained indirect evidence about the effects of provision of support. Results of the trial suggest that an intervention for parents of children with brain injury may be more effective in reducing the burden of illness if it focuses on the needs of the parents as opposed to the needs of the child. One prospective observational study found a significant and direct correlation between the presence of social support and measures of family functioning at 3 years postinjury; a second suggested that the presence of case management may serve to reduce parents' financial problems associated with their children's TBI.

The reciprocal effects of family functioning on outcomes for the child with TBI were not addressed. A number of studies have demonstrated a relationship between higher family functioning and better outcomes for the injured child and bolster the argument for provision of support to families as an intervention for the child.

Conclusions and Future Research

In general, studies have not been conducted with designs capable of providing evidence for effectiveness of interventions for children and adolescents with TBI. Because the focus of this project was effectiveness, many studies were excluded because they did not provide experimental evidence that could be used to guide practice. The published literature for this topic is primarily exploratory. It provides descriptions of programs that are widely accepted, including logical approaches to treatment that have not been validated either through experimental design or in carefully controlled observational studies. The clinical experience represented in the published literature that has guided the design of intervention programs should generate important hypotheses for controlled studies.

Investigations of what might work to rehabilitate children with TBI may benefit from the literature in other related fields. Future research could be guided by themes that have emerged across many disability groups. Although TBI has its unique features, it shares many characteristics with other disabilities. The task is to identify the shared characteristics, and include what has been learned in other fields when designing interventions. One example is social skills training. Certain models for social skills training and cognitive rehabilitation have been shown to be ineffective with people who have other, similar disabilities, yet these models are being used in TBI rehabilitation. At the very least, the failure of these interventions in other fields should call into question their effectiveness with TBI. Similarly, it is important to pay attention to and systematically test successful approaches in other fields.

Three gaps in the literature about child and adolescent TBI define priorities for future research.

  • 1

    There is insufficient evidence about the natural history of TBI in this population. Longitudinal, observational studies with large samples are needed to provide this information. Such studies could help researchers and clinicians understand and define the subsets of severity categories, assessments, and interventions. Without distinct subsets, researchers will continue to pool diverse groups into the same study samples and produce results of questionable value.

  • 2

    Interventions must be tested with experimental study designs.

  • 3

    Because of the strong influence of development on all aspects of life for this population, both longitudinal and experimental studies must incorporate concepts of human development presented in this paper, as well as sophisticated methods of analysis capable of accounting for individual variation.

Finally, the field of Life-Span Developmental Psychology provides a technology for designing studies and analyzing data that accounts for individual variation, which is important for the evaluation of recovery from TBI for both adults and children. The approaches suggested here will result in complex research designs and data sets in which children with and without TBI are followed for extended periods of time with multiple times of assessment. In addition, the children -- and possibly their families, teachers, and/or friends -- would be asked to complete multiple assessments at each time of measurement. The focus becomes predicting individual growth curves from antecedent variables such as age at injury, initial status, environmental factors (e.g., family functioning), and intervention techniques. Hence, the focus is on the prediction of growth curves and trajectories in performance among children following TBI compared with control children and/or children with TBI participating in alternative interventions. To maximize these data, several statistical techniques are available, including growth curve modeling, cluster analysis, and time-series analysis.

Chapter 1. Introduction

In 1997, the Evidence-Based Practice Center (EPC) at Oregon Health Sciences University (OHSU) contracted with the Agency for Health Care Policy and Research (AHCPR) to produce an evidence report on rehabilitation from traumatic brain injury (TBI) (Chesnut, Carney, Maynard, et al., 1999).

At the conclusion of the project, AHCPR requested that the OHSU EPC conduct a survey of the literature regarding child and adolescent TBI rehabilitation. Specific objectives for the project were to:

Our main goal was to create a template for a comprehensive, systematic review of existing literature. Our second goal was to describe research projects capable of closing information gaps revealed by a survey of the literature. Using this report as a guide, the International Brain Injury Association (IBIA) convened a pediatric and adolescent working group at the 1999 Aspen Neurobehavioral Conference and initiated a project to produce guidelines for the management of children with TBI. Their goal is to present the guidelines to the World Health Organization for consideration as international standards.

An understanding of child and adolescent development is necessary to an understanding of recovery from TBI during those phases of life. That is, developmental change is not merely an aspect of childhood and adolescence -- it is the main fact of that stage of life and comprises the main set of processes in play. The following section outlines the intersection between developmental science and TBI recovery and provides a schema for containing information generated from that intersection.

Conceptual Model for Rehabilitation of TBI in Children and Adolescents

Human Development and Recovery from TBI: Synthesizing the Literature

Children are naturally changing and developing both before and after they are injured, including while they are receiving rehabilitative interventions (Fletcher, Ewing-Cobbs, Francis, et al., 1994; Michaud, 1994). For this reason, in order to examine the effects of rehabilitation, there is a critical need for information on normal child development and for longitudinal studies comparing the development of injured and uninjured children. Such studies should assess the capabilities of children at different ages. They also should examine individual variation in developmental outcomes of children with different injuries and in different social environments (Broman and Michel, 1994; Jaffe, Polissar, Fay, et al., 1995; Taylor and Alden, 1997; Thompson, Francis, Stuebing, et al., 1994; Yeates, Taylor, Drotar, et al., 1997).

The literature on child and adolescent TBI is extremely varied, ranging from studies of brain growth and sensorimotor deficit to studies focused on language, school performance, and psychiatric symptoms. The best organizing principle for reviewing this literature comes from the modern study of human development and, in particular, the metatheoretical approach known as life-span developmental psychology. Simply stated, any research question about child and adolescent TBI must be oriented to the relevant developmental category and age group. Also, subsets of information within a research question must address developmental phases. For example, when describing the sample of a particular study, all of the following variables should be identified: age at injury, age at evaluation, and time since injury, as well as the developmental implications of those age-related landmarks.

The rate and intensity of change in the brain is more rapid in childhood than in any other period of life. The great growth spurt in the human brain begins prenatally at about 3 months before term and ends at the age of 2 years. Initially, the brain adds neurons at the rate of about 250,000 per minute, and the new cells quickly migrate to specific brain sites and begin to grow. About twice as many neurons are made as will eventually survive in the mature brain (Kolb, 1989). A newborn infant's brain has reached 25 percent of its adult mass, and by the age of 2 years it grows to 75 percent of its final weight. In the last stages of this period of intense growth, the addition of new cells gives way to rapid myelination, extensive growth of axons, dendrites, and synapses, and increasing levels of neurotransmitters. After 2 years, growth slows and changes. Neural connections proliferate, while the total number of neurons is reduced by cell atrophy and death, presumably by the selective pruning of experience. The brain may lose up to one-half of its original neurons by puberty, but with the rapid growth of the remaining neurons, the brain achieves its full adult mass well within the range of pediatric age. It reaches 95 percent of adult size by the age of 7 years and full adult weight between 14 and 16 years of age. The brain grows to its full size before the end of adolescence (Berger, 1998; Berk, 1998; Sigelman and Shaffer, 1995).

A question that illustrates the shared territory of development and TBI recovery is, do injuries early or late in life afford better chances for recovery of function? In the 1930s, Margaret Kennard studied brain lesions in monkeys (Kolb, 1989) and found three things about focal lesions in the brains of young monkeys:

  • 1

    They produced deficits that were different than those in mature brains.

  • 2

    The behavioral effects in young and old animals varied with the type of behavior under study.

  • 3

    Certain deficits did not appear in young animals until a much later stage of development (Dennis, Wilkinson, Koski, et al., 1994).

The results of this work acquired an oversimplified interpretation, known as the "Kennard Doctrine," that better recovery from TBI can be expected in children than in adults, after accounting for severity of injury. In fact, the work of Kennard was an attempt to sort out the vulnerabilities and strengths of developmental stages. The key concepts introduced by Kennard were plasticity, sparing, lateralization, and crowding. The large surplus of brain cells produced in the first 2 years of life implies that damage at that time might be less harmful because there is ample time to re-grow lost connections with extra, undamaged cells. This high plasticity of a young brain might result in sparing of a function that would be lost in an older person, an example of the hypothetical benefit of being injured in an early stage of development compared with being injured later in life.

The limits of plasticity and sparing, however, involve the pace of lateralization in the growing brain. The timing of localization of function in one hemisphere or another of the developing brain will limit the extent to which a lost function can be regained once lateralization takes place because the function can no longer be exported to an undamaged hemisphere. This limit is partly a function of crowding, which suggests that attempts to re-route connections in the brain will take up too many neurons needed for other functions and result in two deficits instead of one. This is an example of the developmental principle of critical periods -- originally observed in embryology -- in which a change must happen at a particular time or the chance is permanently lost. The idea of critical periods also points up a vulnerability of early age of injury. If a budding function never starts because of early injury, it might never have the chance to appear at all or be so distorted in its beginnings that it never reaches full potential. This may be much worse than interruption of a process already under way. A process might be derailed by early injury that would suffer only a detour if injury occurred later in development. This is a crucial difference between prevented and interrupted development (Thompson, Francis, Stuebing, et al., 1994; Taylor and Alden, 1997).

Life-Span Perspective on Human Development

Life-span developmental psychology is a metatheory of human development that focuses on the study of stability and change in human behaviors throughout the entire life course (Baltes, 1987; Montado and Schmitt, 1982). The life-span approach emphasizes differential individual change and the developmental outcomes of interactions between the individual and his or her environment. One major goal of the life-span approach is to focus on understanding stability and change in human behavior within individuals (intraindividual change) and differences in patterns of stability and change between individuals (interindividual differences). In other words, concentration is on the "description, explanation, and modification (optimization) of intraindividual change in behavior across the life-span and with interindividual differences (and similarities) in intraindividual change" (Baltes, Reese, and Nesselroade, 1977, p. 4). In the literature of developmental psychology and education, these individual profiles of change are often called developmental growth curves or trajectories.

A second major goal of the life-span approach is to stress that individual developmental trajectories are simultaneously influenced by multiple and interacting individual and environmental systems. (Baltes and colleagues (1977) summarize the definition of development as:
Change in BA = f(H, Epa, Epr)
where "Change in BA" is behavior change with age, and is a function of
H (heredity), Epa (past environment) and Epr (present environment)

This formula makes it clear that change in behavior is produced by a continual interaction between individual biology, cumulative interactions with environments of the past, and current interactions with present environments.

Matrix of Developmental Stages and Categories of Development

Table 1. Developmental stages and categories of development
Development Category
Chronological developmental stageSomatic: neurological/hormonalSomatic: sensorimotorIntel./cognitive executive functionsLanguageEmotional/ behavioralSocial
Infancy: 0 to 6 months
Infancy: 7 to 12 months
Infancy: 13 to 18 months
Infancy: 19 to 24 months
Childhood: 2 years
Childhood: 3 to 4 years
Childhood: 5 to 6 years
Childhood: 6 to 8 years
Pre-puberty: 9 to 11 years
Early Adolescence: 11 to 14 years
Late Adolescence: 15 to 20 years
Table 1 presents dimensions of the developmental process discussed above. Adapted from several sources (Berger, 1998; Berk, 1998; Sigelman and Shaffer, 1995), the matrix is a guide to orient key questions about children and TBI and to locate questions within the appropriate developmental category and age group. It maps human development on two dimensions. The first dimension is chronological age. It shows the periods in which distinct and important changes appear in a child's progress toward maturity. Early in life, changes are most rapid, and the timing of changes is more finely calibrated, so that the first 2 years of life alone are divided into four stages of infancy, and the next 6 years of life are divided into four stages of childhood. Later, the changes are less rapid and the blocks of time larger, so three stages account for the whole second decade of life. The second dimension comprises the categories of change during development. The first two are almost entirely somatic change; the other four are almost entirely psychological and social changes. We say "almost" because all of the categories interact during development, and none is free of the influences of the others.

Table 1 is a tool for considering the range of studies discussed in this report. The age of the sample for a particular study determines the row or rows of the matrix. The cells made by intersection of row and column represent the important issues identified by the dimension of developmental science and the expected capacities of the sample at that stage in life. The more we know about how brain injury affects conditions specific to each cell, the more effectively we can help the survivor. This is especially true if the matrix also serves to remind us of all the relevant issues in the person's life that must be addressed in a complete treatment program.

Table 1 also can be used to map existing research and present knowledge (or uncertainty) onto the matrix to provide a rough assay of the present state of knowledge, to identify the places where work is needed, and as a way to find neglected topics of study (empty cells).

Plainly, the more we can say about plasticity and critical periods in the first column of the matrix, the more we will know about the possibilities of recovery after early injury. Work by Levin, Eisenberg, Wigg, et al., (1982) found that younger children had worse deficits in memory and intelligence, and Woods (1980) found effects of lateralization as early as 1 year of age. Similar results have been found many times since (e.g., Riva and Cazzaniga, 1986; Kaufmann, Fletcher, Levin, et al., 1993; Anderson and Moore, 1995; Dennis, Barnes, Donnelly, et al., 1996). It may be that too much weight has been given to simple anatomical plasticity of childhood and not enough to the idea of critical periods and how other aspects of development interact with the somatic categories (Krashen, 1973).

Burden of Illness of TBI in Children and Adolescents

The estimated incidence of TBI doubles between the ages of 5 and 14 years, and peaks for both males and females during adolescence and early adulthood to approximately 250 per 100,000 (Centers for Disease Control and Prevention, 1998). Motor vehicle accidents are the cause of one-third to one-half of TBI in adolescents. In younger children, pedestrian traffic accidents are the leading cause of TBI, followed by falls.

The greatest proportion of people who survive TBI are children and adolescents. Because the lives of most survivors of moderate to severe TBI involve chronic, life-long disabilities with varying degrees of dependence (Chesnut, Carney, Maynard, et al., 1999), the cost in individual suffering, family burden, and financial burden to society may be greater for those who have more years to live.

For children with TBI who have multiple functional deficits, limitations in bathing, dressing, and walking are observed in between 50 percent and 90 percent, depending upon and directly proportional to the number of functional deficits (DiScala, Osberg, and Savage, 1997). For children with four or more functional deficits, impairments in self-feeding, cognition, and behavior can be observed in 75 percent, as well as impairments in speech in 67 percent, vision in 29 percent, and hearing in 16 percent (DiScala, Osberg, and Savage, 1997).

The opinion has been expressed by a number of clinicians and researchers that one of the most important problems in child and adolescent TBI is underdiagnosis (Bergman, 1998; DePompei, 1998; Glang, 1999; Gordon, 1999; Sohlberg, 1999; Ylvisaker, 1998). They believe that many children with TBI are either not identified as having a problem or receive the wrong diagnosis. The concern is that the problems of these children remain unrecognized or are treated with methods developed for other pathologies that are inappropriate to the special needs of TBI. In the 18th Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act (U.S. Department of Education, 1996) the number of children receiving services because of their disabilities was tabulated by diagnosis. For the 1994-1995 school year, only 7,188 students ages 6 to 21 years were identified within the school system as having a traumatic brain injury. The gap between this number and reports of incidence of TBI among children and adolescents suggests that many children with TBI may be misidentified or unidentified. Consequently, we do not have a complete picture of the burden of illness, either on an individual level or a population basis.

For children who have been accurately identified, comparative studies of TBI need to include mediators of outcome that account for variations in outcome. Individuals with TBI are part of a diverse group. For example, with respect to severity, the range of outcome is from death or persistent unresponsiveness at one extreme to full recovery within a relatively short period of time at the other extreme. Between these two extremes are different profiles of ability and need -- at every level of severity -- depending on preexisting factors, the exact location and nature of the brain injury, and other factors. In addition to type and location of injury and the child's developmental stage, factors such as injury severity, time from injury to evaluation, age at injury, and pre-injury characteristics appear to be important predictors of recovery.

Injury Severity

The National Pediatric Trauma Registry (NPTR) is a multi-institutional database of information on children and adolescents (0 to 19 years of age) who have been admitted to a hospital for an injury since 1985. A review of data from the NPTR on 24,021 cases of TBI that occurred over a period of 7.5 years revealed that 16.6 percent of the children sustained severe injuries based on the Injury Severity Score (ISS), and 11.5 percent of the children sustained severe head injuries based on the Glasgow Coma Scale score (GCS) (DiScala, Osberg, and Savage, 1997). The same study indicated that 6.1 percent of children with brain injuries in the sample died, compared with 0.5 percent of children without brain injuries from the entire data set of all traumas. This study also revealed a relationship between multiple injuries and degree of functional limitation. For children with injuries to the head, extremities, and other areas of the body, 54 percent had four to nine functional limitations, compared with 32 percent who had injuries to the head and other body regions (but not to extremities), and 14 percent with head injury only.

Two studies about long-term outcomes from mild (Klonoff, Clark, and Klonoff, 1993) and severe (Boyer and Edwards, 1991) brain injury sustained during childhood or adolescence suggest a better outcome for children who suffer less severe brain injuries. In the first study, 159 children from an original sample of 231 children (average age 8 years) admitted to one of two university hospitals for brain injury (90 percent mild) over a 15-month period were located and interviewed 23 years after injury. Fifty-nine percent of participants were married, and 80 percent were employed full-time; 1 percent were disabled, and 3 percent were unemployed. In the second study, the severely injured sample (n = 220) was prospectively followed for 3 years after discharge from one inpatient rehabilitation program that receives referrals from regional trauma centers. At discharge, the following proportions by age group returned home: 0-5 years, 75 percent; 6-10 years, 100 percent; 10-15 years, 80 percent; 16-21 years, 60 percent. After 3 years, 79 percent were home, and 10 percent were in long-stay nursing facilities. At 1-year followup, 8 percent were in regular education, 39 percent in special education, and 17 percent in cognitive therapy; 26 percent were not in an educational program, and 1 percent were in day care. The disposition of the remaining 9 percent was not specified. Glasgow Outcome Scale scores (GOS) after 3 years were 3 percent dead, 14 percent vegetative, 14 percent severe, 17 percent moderate, and 52 percent good.

A series of six prospective studies from one cohort of patients treated at one of two regional hospitals suggests an indirect relationship between severity of injury and scores on neuropsychological tests (Fay, Jaffe, Polissar, et al., 1993; Fay, Jaffe, Polissar, et al., 1994; Jaffe, Fay, Polissar, et al., 1992; Jaffe, Fay, Polissar, et al., 1993; Jaffe, Polissar, Fay, et al., 1995; Yorkston, Jaffe, Polissar, et al., 1997). Children injured between the ages of 6 and 15 years who were admitted to the hospital were prospectively followed beyond 3 years. Results showed consistent association of severity with neuropsychological test scores at early outcome, 1 year, 3 years, and > 3 years. The written language skills of the more severely injured children were worse than those of their less severely injured counterparts. However, no significant difference was evident on test scores between the less severely injured children (GCS 13-15) and controls.

The weakness in these studies is the failure to stratify by other factors that interact to influence outcome; thus, their results should be viewed with caution when attempting to infer a direct relationship between severity and outcome. For example, pooling age groups or not accounting for pre-injury characteristics may mask variability in outcomes associated with severity. Although children with less severe injuries may have better outcomes, there may be many exceptions to the general "dose response" rule (Ylvisaker, 1999).

Time from Injury to Evaluation

A review that focused on age-related differences in child and adolescent TBI (Taylor and Alden, 1997) found that with longer time since injury, children's cognitive and academic skills decreased, suggesting that deficits may appear or become worse over time. The question of deterioration over time and its measurement is complex and must be examined with all potential influences in mind. Assessments conducted sooner after injury may be less reliable in measuring or predicting long-term outcome than those taken at a later time. Many assessment tools have built increases into their age-related norms for scoring. With these tools, an observed decrease in scores may actually reflect no change (no decrease or increase in abilities). Additionally, factors that interact to produce deterioration over time are (1) neurologic maturation (part of the brain that is injured may need to mature physically to support later developmental acquisitions, but this maturation is blocked by the earlier injury); (2) psychoreactivity (related to personal loss, loss of friends, etc.); and (3) teaching and behavior management strategies that are not appropriate for children with TBI (Ylvisaker, 1999).

The Taylor and Alden study (1997) also suggests that assessment during puberty may be particularly unreliable because of influences during that phase such as social difficulties, verbal memory impairment, and behavioral problems. A second study describing pediatric TBI rehabilitation medical management (Jaffe and Hays, 1986) indicated that special problems with brain injury incurred during childhood and adolescence include hypopituitarism, growth impairment, and isosexual precocious puberty.

Age at Injury

A retrospective, population-based study (Michaud, Rivara, Grady, et al., 1992) of severe admissions for head injury (GCS < 8, N = 75, < 16 years of age) to a level 1 trauma center found that as age increased, the proportion of good recovery also increased, and the proportion of death decreased. The Taylor and Alden review (1997) reported that outcomes were worse for children < 7 years old compared with those > 7 years but did not specify whether severity of injury was accounted for in the studies reviewed. Therefore, the less favorable outcome they reported in younger children may reflect (1) a higher probability of severe injuries for children < 7 years, or (2) a lower probability of recovery from injuries for children younger than 7 compared with children 7 or older, after accounting for injury severity.

Pre-Injury Characteristics

Two studies, one prospective (Boyer and Edwards, 1991) and one descriptive (Jaffe and Hays, 1986), indicate that a greater proportion of children than adults who sustain TBI have premorbid behavioral and emotional problems. In the Boyer and Edwards (1991) sample (n = 220), 35 percent had learning disabilities, attention deficit, or emotional difficulties prior to injury. Emotionally or psychologically compromised children may be particularly vulnerable to TBI.

In a study about the effects of family on recovery from TBI in children (Taylor, Drotar, Wade, et al., 1994), a predictive model that includes measures of pre-injury child and family status was developed on 96 children with TBI and 71 orthopedic controls, ages 6 to 12 years at time of injury. Pre-injury factors including child behavior, marital adjustment, family functioning, health and daily living, and parent behavior accounted for 57 percent of the variance in postinjury behavior problems, 37 percent of the variance in adaptive behavior, and 13 percent of the variance in achievement.

Practice Settings

Referral to Rehabilitation

Several studies indicate that referral to rehabilitation for children with TBI may depend on a variety of factors. Osberg and colleagues (1990) examined a subset of the National Pediatric Trauma Registry (NPTR) of children with more than four impairments. Eighty percent (374 children) had sustained a head injury. Of these, 31 percent were discharged to inpatient rehabilitation. While their study associated severity of injury and functional impairment with the likelihood of discharge to inpatient rehabilitation, it also found that children treated in centers with on-site rehabilitation were significantly more likely to be discharged to rehabilitation than those treated in centers without such a resource. A subsequent study using the NPTR (DiScala, Osberg, and Savage, 1997) revealed that approximately 90 percent of children with one to three functional limitations were discharged from the acute hospital to home, whereas 50 percent with four to nine functional limitations were discharged to rehabilitation or other extended care. Although half the children discharged to home were diagnosed with specific limitations in walking, bathing, and/or dressing, only 13.2 percent were referred to occupational therapy and 23.7 percent to physical therapy.

Educational Settings and Programs

Although many children may transition to inpatient rehabilitation and some to long-term care facilities, the goal, when possible, is return to school. Laws requiring schools to provide for the special educational needs of students define schools as the practice setting for ongoing rehabilitation of most children with TBI. Public Law 94-142 (Federal Register, 1975) mandates the accommodation of students with special needs within the school system. Its subsequent version, Public Law 101-476 (Individuals with Disabilities Education Act, 1990) officially recognizes the category of traumatic brain injury, entitling students with special needs to a free, appropriate, public education, and providing for reimbursement for this service to State and local educational agencies. Ideally, a child identified with TBI would be evaluated for special needs, and an individual education program (IEP) designed to meet those needs would be provided. The content and quality of the program depends on resources available in the school, and varies across States and regions.

Characteristics such as social inappropriateness, lack of awareness, and decreased control of attention, memory, and strategic thinking (Ylvisaker and Feeney, 1995) may result in difficulties when integrating a child with TBI into mainstream educational settings. Some States provide training for public school teachers that focuses on the special needs of children with TBI (Savage, 1997). Some programs serve children who live at home together with those who require residential treatment in a specialized educational/neurorehabilitative setting (Luiselli, Gardner, Arons, et al., 1998). Choice of model (mainstream vs. separate) may be dictated by the severity of deficits and functional capabilities of the child; it also may be influenced by the availability of resources within the community, family choice, or the local or regional philosophy of inclusive vs. segregated education of students with disabilities.

Assessment and Outcome Evaluation

Ylvisaker and Gioia (1998) defined the complexities of assessing children and adolescents with TBI as follows:

  • 1

    Most children with severe TBI improve neurologically in ways that are difficult to predict for several weeks or months or possibly even years after the injury. Therefore, an assessment completed in the early weeks or months following injury may quickly lose its validity as an accurate description of the child's profile of strengths and weaknesses.

  • 2

    Executive function deficits (associated with prefrontal lobe injury) are notoriously resistant to identification and classification with standardized office tests alone.

  • 3

    Recovered knowledge and skills acquired before the injury can combine with new disability, including severe difficulty acquiring new knowledge and skills, to create misleading profiles of ability.

  • 4

    Pronounced inconsistency in a child's performance, related to neurologic, emotional, and contextual factors, adds to the difficulty of straightforward interpretation of test results. (Ylvisaker and Gioia, 1998, p. 161)

This account of the difficulties associated with assessing children with TBI echoes our earlier evidence report on rehabilitation for traumatic brain injury in adults (Chesnut, Carney, Maynard, et al., 1999) and introduces special problems with assessment that are unique to children. In the adult report, we tabulated all tests of cognitive function used to evaluate adult samples from studies included in the report. Ninety-one different assessment tools were used in 160 separate testing sessions reported in 24 studies, indicating extreme lack of standardization. Additionally, we found little evidence of an association between high scores on tests and better functional capacity. We concluded that the value of these tests as accurate indicators of functional capacity and predictors of performance in life situations is questionable.

In addition to the question of the predictive validity of assessment methods, the tools also may lack reliability, especially with children who have sustained prefrontal injury. Inconsistency in test scores is commonly observed in both children and adults with executive function deficits (Ylvisaker and Gioia, 1998). Also, a person may perform poorly when new information or skills are required or when effective behavior regulation is necessary but perform adequately when knowledge and skill acquired before the injury are needed. First it must be determined which tests are reliable indicators for which subgroups of children with TBI. The question of their predictive validity can then be addressed.

Summary

In this chapter, we have outlined our goals and objectives for the study. Our purpose was to conduct a systematic review of the literature about TBI in children and adolescents oriented around key research questions and to produce a tool for other research groups to use to conduct systematic reviews and create strong research projects. We proposed that developmental science is a necessary background for this and future projects about child and adolescent TBI, and we presented a matrix (Table 1) that serves to organize information about this topic. Finally, we described the characteristics of TBI, outcomes, practice settings, and assessment that are unique to children and adolescents.

Chapter 2. Methods

Topic Assessment and Refinement

Two panels of experts, one local and one national (see Appendix A), worked with the research team to identify key questions in the rehabilitation and survivor phases of recovery from TBI for children and adolescents. The panels were composed of three pediatric physiatrists, the mother of a child with brain injury, two neuropsychologists, an educational psychologist, a clinical psychologist, and two speech pathologists -- one from a children's hospital and one who works in the public school system. The local panel met to develop a common understanding of the main concepts bearing on questions of effectiveness in rehabilitation specific to children and adolescents and to identify key questions for investigation. Prior to the first meeting, the panel was sent a document describing the prevalence, incidence, and burden of illness of TBI, as well as the key questions that directed the adult evidence report investigation. The format of the meeting was structured to promote a full and free interaction among the members. This first meeting was aimed at identifying the main issues of rehabilitation for children with TBI, including their integration into the educational system.

Five questions concerning the rehabilitation of children and the effect of the disability on families were proposed by the local panel. Questions were refined through further discussion and submitted to the national panel for review.

The national panel traced the child's path through the medical, rehabilitative, and educational systems to highlight differences in the context of adult and pediatric rehabilitation. Unlike adults, most children's rehabilitation occurs in schools rather than in medical settings. Also, provisions for children with handicaps are mandated by law, whereas choice of adult rehabilitation setting is driven primarily by insurance funding. An understanding of these issues contributed to the final articulation of the key research questions. The final questions are:

  • 1

    Does the application of early, intensive medical rehabilitation in the acute care hospital improve outcomes for children with TBI?

  • 2

    For children diagnosed with TBI, what is the proportion provided special education that is designed to accommodate the needs of TBI?

  • 3

    Do children with traumatic brain injury who are provided special education that is designed to accommodate the needs of TBI have better outcomes than (a) those provided special education that is not so designed, and (b) those who do not receive special education?

  • 4

    For children who have sustained brain injury, does the early identification of (a) the child's developmental stage at the time of injury, (b) the child's developmental stage at the time of assessment, and (c) the extent to which the injury has arrested the child's normal developmental process increase the ability to predict when the child will present the needs, behaviors, and problems resulting from brain injury?

  • 5

    Does the provision of support to families of children with brain injury enhance the family's ability to cope and reduce the burden of illness?

The rationale for asking these questions, and the definitions, target populations, and outcome measures for them, can be found in Appendix B. Members of the expert panel specified a wide range of outcomes, from physiological complications and health status at discharge from the acute setting to long-term functional measures, such as academic achievement, play skills, language development, social integration, and cognitive abilities. Each outcome can be located within a developmental category presented in Table 1, and this matrix should be used to organize the array of outcomes that would be evaluated in a comprehensive systematic review.

Literature Search and Retrieval

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   Figure 1. Process of search and selection of articles for review

A research librarian worked with the principal investigator to compose search strategies designed to locate studies about child and adolescent TBI from a number of databases (see Appendix C). Literature was searched using MEDLINE (1976-1998), CINAHL (1982-1998), HealthSTAR (1995-1998), PsychINFO (1982-1998), ERIC (1996-1998), the Cochrane Library, and Current Contents (1998). Figure 1 presents the results of the searches. From MEDLINE, we retrieved a total of 1,098 references; CINAHL, 144; HealthSTAR, 6; PsychINFO, 119; ERIC, 74; the Cochrane Library, 2; and Current Contents, 21, for a total of 1,464 references.

Two members of the research team read the abstracts of these references and eliminated articles based on the following exclusion criteria: (1) not TBI (e.g., cerebral palsy); (2) adult sample; (3) instrument development; or (4) alcohol/drug abuse. Following this process, we were left with 376 studies about TBI in children or adolescents. Note that we included all study designs and did not limit inclusion by our five key questions. Our intention was to begin assembling a bibliography for use in future research. We categorized each study by (1) design, (2) deficit resulting from the injury, (3) therapeutic intervention, (4) outcome of intervention, and (5) predictors of outcome; within those categories, each study was coded (refer to Appendix D).

There were additional exclusion criteria for the second research question. This question sought information about referral to special education for students with TBI. For this question, the following studies were excluded:

  • Studies that predated the 1975 All Handicapped Children Act and those that were conducted outside the United States. It was thought that these studies would artificially inflate the observed variability in student placement patterns after TBI.

  • Studies that relied on selected samples.

  • Prospective studies with a design that may have influenced school placement, thus introducing bias to the outcome.

Of the 376 studies, 236 addressed one of the five key questions. An additional 120 articles were added from reference lists, book chapter bibliographies, and the advice of peers. A total of 356 full-text articles were retrieved and read. Studies containing data relevant to one of the questions were evaluated by a member of the research team. For question 1, we found 1 study containing relevant data; for question 2, 15; for question 3, 8; for question 4, 61; and for question 5, 3, for a total of 88 studies. The remaining 268 articles described programs or interventions without providing patient or student data.

Review of Key Studies

The investigation for each key question was managed by a member of the research team. That person read all articles containing data relevant to the question and specified and read additional articles to be included from reference lists. Investigators met individually with the principal investigator to confer about included studies, and the entire team met weekly to discuss progress and maintain a common theme across the five questions.

A template for constructing evidence tables is presented in Appendix E. Categories from the evidence tables in the adult report were used as a guide for data abstraction. The template also incorporates variables specifically relevant to child and adolescent TBI that should be abstracted in a comprehensive systematic review. More details of the construction of evidence tables are given in sections on each key question. Summaries of key studies are presented in Chapter 3 of this report.

Chapter 3. Results

Literature Search

An initial strategy modeled after the one used for the adult evidence report was applied to one MEDLINE database (1995-1998). The strategy failed to capture 43 articles we had previously identified as relevant. We located those articles in MEDLINE, noted their MeSH terms, added those terms to the strategy, applied it to the same file, and confirmed that the new strategy would capture the articles missed by the first strategy. We applied the new strategy to MEDLINE and HealthSTAR. We then wrote more general strategies for databases from ERIC, PsychINFO, CINAHL, Current Contents, and the Cochrane Library (see Appendix C) and acquired the articles captured by the searches.

As we began retrieving and reading articles, we referred to reference lists of those articles for additional studies, and discovered an unacceptable number of relevant studies still not captured by the strategies. Examples of problems encountered are:

  • 1

    Several publications in the Journal of Head Trauma Rehabilitation (JHTR) were not captured. We found that CINAHL contains some, but not all, of these articles.

  • 2

    A large body of literature is indexed as "chronic brain damage" that mainly contains studies on outcomes from perinatal anoxia, a condition we excluded from this review. However, a number of studies about "traumatic brain injury" are indexed in "chronic brain damage" and not in "traumatic brain injury." To acquire these studies with a search strategy would require accessing the full body of "chronic brain damage" literature and manually eliminating all but the ones about TBI that were miscategorized.

  • 3

    The revised search strategy failed to capture all relevant articles about language development.

Table 2. Studies acquired from electronic and manual searches
QuestionElectronic searchManual searchTotal foundPercent manual
Initial total23612035634
Used for Quest. 11010
Used for Quest. 21051533
Used for Quest. 353838
Used for Quest. 411506182
Used for Quest. 521333
# used in review29598867
% used in review12%49%25%
We elected to gather all relevant articles identified from the search, and proceed to acquire as much as possible of the remaining important literature from reference lists of articles and book chapter bibliographies. We also asked colleagues to identify studies containing data that were relevant to one of the key questions. Table 2 shows, for each research question, the number of studies with data acquired using the electronic database search strategy, as well as the number added manually from reference lists, bibliographies, and peer advice. It also shows the percent of the total number of relevant studies that were acquired from manually searching reference lists, etc. As shown in Table 2, no studies were added to question 1, and only a few were added to questions 2, 3, and 5. However, 50 of 61 relevant articles were added to question 4 from the manual method. Only 11 were acquired using the electronic search strategy. This indicates a lack of systematic categorization within key databases of relevant literature on TBI recovery for children that pertain to this question.

Key Questions

  • 1

    Does the application of early, intensive medical rehabilitation in the acute care hospital improve outcomes for children with traumatic brain injury?

We found no randomized controlled trials and no comparative studies that investigated the efficacy of early, intensive rehabilitation for children or adolescents. Inferences about this intervention for children have been drawn from studies with adult samples.

Of three observational studies we located that used child and adolescent samples and contained data about this question, one (Berger, Worgotter, Oppolzer, et al., 1997) specifically reported outcomes associated with early, intensive rehabilitation. In this prospective, uncontrolled study, 38 severely injured children and adolescents admitted to one inpatient rehabilitation center were evaluated during their stay in the acute care hospital and at 6 months postdischarge from inpatient rehabilitation. Patients received intense, multidisciplinary neurorehabilitation in the hospital and in the rehabilitation center. Two measures of function were employed: the Glasgow Outcome Scale (GOS) score and a vigilance score designed by the researchers for this study. On admission to the rehabilitation center, 74 percent of the children were minimally responsive as measured by the vigilance score. By the 12th week of treatment, only 21 percent were minimally responsive. Deducting 6 patients in whom rehabilitation was incomplete at time of discharge, rehabilitation discharge GOS was 3 vegetative, 13 severe, 7 moderate, and 8 good; 1 patient died. Of the patients located at 6-month followup, GOS was 1 vegetative, 13 severe, 9 moderate, and 7 good.

Of the remaining two studies, one retrospectively compared outcomes of children who suffered anoxic brain injury with those who suffered TBI (Vander Schaaf, Kriel, Krach, et al., 1997). Ninety-eight patients from one inpatient pediatric rehabilitation facility were introduced to rehabilitation at varying times after injury, some sooner than others. They were evaluated for functional mobility at discharge from the center and at 1 or 2 years postdischarge. It was found at followup that the children with more functional mobility had been admitted to rehabilitation sooner after injury than those with less functional mobility, suggesting that earlier rehabilitation may be a factor in improving functional mobility. However, children who had less severe injuries may have been discharged to rehabilitation earlier than more seriously injured children, confounding the effects of severity with those of the timing of treatment. To address this, authors removed children in a vegetative state or those who could only smile (and thus those with longer time from injury to rehabilitation due to severity) from the data set and performed a discriminant analysis. It showed a significant relationship between duration of unconsciousness and functional mobility but no significant relationship between length of time from injury to rehabilitation and functional mobility, either at discharge or followup. Therefore, the analysis did not support the suggestion that early rehabilitation improves outcomes.

The third study (Sobus, Alexander, and Harcke, 1993) demonstrated that some children with TBI suffer from undetected musculoskeletal trauma and heterotopic ossification, indirectly arguing for early physiatry intervention. Eighty-two children and adolescents (60 with TBI and 22 with spinal cord injury [SCI]) treated at one rehabilitation unit over 18 months were given bone scans within 4 months of the injury. If the bone scan showed previously unrecognized trauma, its clinical significance was determined by reviewing nursing, physical therapy (PT), and occupational therapy (OT) charts to track whether the child had been favoring the traumatized extremity or whether complaints of pain during therapy led to behavior problems. Fifty-four patients were found to have trauma sites undetected prior to the bone scan; 28 did not. Of the 54 patients with previously undetected trauma sites, 43 had TBI and 11 had SCI; (3 SCI and 16 TBI had skeletal trauma; 4 SCI and 19 TBI had soft tissue trauma; 4 SCI and 8 TBI had heterotopic ossification). Fifteen patients had impeded rehabilitation as a function of their undetected traumas; all 15 had TBI. The authors suggested that the difficulties in communication unique to TBI warrant special methods for detecting physical traumas with that population. A primary weakness of this study is that, of the original 82 patients given bone scans, no evaluation was performed of the 28 patients for whom the scans did not show previously undetected trauma sites. Their charts would need to be reviewed as with the 54 patients discussed above, and the results of the two groups would have to be compared in order to verify the value of the bone scan.

We sought information about the effect of early, intensive rehabilitation on four outcomes (see Appendix B) specified by our technical panel as relevant to child and adolescent TBI. We found no evidence to support or disprove the effectiveness of this intervention. The question has not been addressed with studies employing research designs capable of demonstrating efficacy. The one study that evaluated relevant functional outcomes did not include a comparison group. While the point of the article about undetected musculoskeletal trauma was to recommend early bone scans (and not necessarily early physiatry), it raises pertinent questions about the unique communication problems associated with TBI and the possible positive results of early attention to physical therapy issues.

  • 2

    For children diagnosed with traumatic brain injury, what is the proportion provided with special education that is designed to accommodate the needs of TBI?

This question has two parts: (1) How many children with TBI receive special education services, and (2) Are the programs and services they receive delivered by people who understand and can manage TBI in children?

We define "special education designed to accommodate the needs of TBI" as a school or program that has the benefit of being informed by professionals who are trained in and/or understand the needs specific to children with TBI. Special education is provided in a number of different ways. An individual education program (IEP) is one method for delivering special education. It is a contract between parents and the school for the student who has been found eligible for special services, tutoring, or accommodations. An IEP is a tool for parents and teachers that identifies skills, strategies, and behaviors the student needs to function in school. It encompasses traditional educational goals and should include planning to create opportunities for social integration, leisure activities, preparation for work, and independent living skills.

Children with TBI who can resume academic activities may receive an IEP or some other form of special education. They may be reintegrated into their pre-injury classroom, be placed in a separate class with other children with disabilities, receive private tutoring, or attend classes provided by the long-term care facility in which they live. Some schools have professionals who are trained in the care and recovery process of children with TBI and can contribute that knowledge to the planning and implementation of special education programs for those children.

Prior to passage of the Education for All Handicapped Children Act of 1975 (Public Law 94-142), a report to Congress indicated that more than 50 percent of handicapped children in the United States were not receiving special educational services or were excluded from public education altogether. Since that time, a limited number of studies have attempted to quantify the proportion of children with head injury receiving special education (U.S. Department of Education, 1996).

Please refer to Chapter 2 (Methods) for literature exclusion criteria specific to this question. A total of 24 studies were evaluated for this question; 9 were excluded because they contained no data. Of the remaining 15 studies that contained data, three predated 1975 (Heiskanen and Kaste, 1974; Kleinpeter, 1976; Klonoff and Paris, 1974), four were conducted outside of the United States (Kinsella, Prior, Sawyer, et al., 1995; Kinsella, Prior, Sawyer, et al., 1997; Klonoff, Low, and Clark, 1977; Rutter, Chadwick, Shaffer, et al., 1980), and four were retrospective studies that included only students with TBI who were referred to a behavioral or psychiatric clinic (Burke, Wesolowski, Buyer, et al., 1990; Donders, 1992; Donders, 1994; Max, Sharma, and Qurashi, 1997). Four studies provide limited information regarding referral to special education programs among students diagnosed with brain injury. We found no studies that documented numbers of special education programs that are delivered by personnel who are trained in caring for and educating students with TBI; therefore, we were only able to address the first part of this question.

The most salient study that evaluated referral to special education for children with TBI (DiScala, Osberg, and Savage, 1997) gathered data from the National Pediatric Trauma Registry, encompassing 76 pediatric trauma centers or children's hospitals in the United States, over a period of 8 years. Descriptive data on 24,021 children were analyzed. Recommendations for special education at discharge from the acute care hospital were evaluated for the subset of children age 5 or older who were not discharged to a medical environment (n = 3,303). Although 18.7 percent were diagnosed with cognitive limitations, special education was recommended for only 1.8 percent (60 children); 3.6 percent received a referral for a home tutor. The authors speculate that lack of guidelines in trauma centers linking them to the educational system may account for low referral rates to special education. Discharges during the summer, a season of frequent pediatric injuries, also may contribute to the low referral rate. Finally, this study tracked referral at time of discharge from acute care; referrals to special education may have been provided during followup examinations.

Based on hospital admissions, two retrospective studies estimated that between 12 percent (Greenspan and MacKenzie, 1994) and 38 percent (Chapman, Culhane, Levin, et al., 1992) of students with known brain injury received special education (excluding premorbid special education enrollment). However, no evaluation of the students with TBI who did not receive special education was provided. Thus, it is not possible to determine if these students needed special services or what proportion of them was functioning well without services. Therefore, we do not know whether these reported referral rates indicate adequate referral, under-referral, or over-referral. Also, using hospital admission records as the denominator in making this estimate probably results in an overestimate of the actual number of children with TBI who receive special services because it does not include children with TBI who were never admitted to a hospital. Finally, excluding children with premorbid special education enrollment may further distort the findings, since children with existing problems appear to be predisposed to sustaining a brain injury.

One cross-sectional State-wide study (Virginia Department of Education, 1991) illustrated that school records underestimate the number of enrolled students who have a brain injury. All public school division special education directors and the superintendent of the Virginia School for the Deaf and Blind at Hampton were surveyed to gather information about students with TBI in the State. Fifty-eight percent of school districts responded representing 60 percent of students in public education in Virginia. Of 133 students identified with a brain injury, 36 percent of students' personal identification files mentioned brain injury. Twenty percent had TBI noted in the School Entrance Physical and Immunization Certificate. Of those students eligible for special education, a brain injury was mentioned in 82 percent of student's "confidential section" of the student file and on 33 percent of students' IEPs. The report did not specify the method used by the special education directors to respond to the survey for identifying the 133 students with TBI.

Few data from peer reviewed, published studies are available to determine patterns of referral to special education for children diagnosed with TBI. The data that are available may underestimate the proportion of children referred. Moreover, no available study used an independent measure of the need for special education to determine whether referral rates were appropriate. Instead, the available data measured the ratio of:
the number of special education referrals
to
the total number of TBI diagnoses.

The important question is, if the child with TBI needs special services, did that child receive them? The answer to that question depends on being able to measure independently the need or potential benefit from special education and then determining what proportion of children who could benefit are actually referred. We did not locate these data in the published literature.

  • 3

    Do children with traumatic brain injury who are provided with special education that is designed to accommodate the needs of TBI have better outcomes than (a) those provided with special education that is not so designed and (b) those who do not receive special education?

Refer to the previous question for a definition of "special education that is designed to accommodate the needs of TBI." No randomized controlled trials were found that examined the effect of special education designed to accommodate the needs of children with TBI. The greatest proportion of studies about education for children with brain injury consists of program descriptions written by clinicians and educators with field experience in integrating children with disabilities into educational settings (e.g., Blosser and DePompei, 1989; Ylvisaker and Feeney, 1995). One study with a comparison group, one small case series, one survey, and five case studies provide data about this question.

In the comparative study (Light, Neumann, Lewis, et al., 1987), a treatment group of children with TBI who met eight inclusion criteria (n = 15) was composed of consecutive admissions to a children's inpatient rehabilitation center over approximately 21 months. Children in the comparison group (n = 6) met the inclusion criteria but could not participate in the treatment because of distance from the hospital, time of referral, conflict with cointerventions, or lack of parental consent. Three classes of measures were used: neuropsychological and intelligence, educational, and adaptive and behavioral. Children were evaluated before and after the intervention. The program, the Neuro-Cognitive Education Project (NEP), provides one-on-one tutoring for each child, with instruction at home and/or in the school setting, and includes a component to assist families in understanding the child's new disabilities. The curriculum and protocol were individually designed for each child to meet that child's needs based on his or her strengths and weaknesses. Duration of the intervention varied from 3 to 7 months and from 19 to 68 hours of tutoring.

For the neuropsychological and intelligence measures, the comparison group performed significantly better than the treatment group at pre-test. Both groups had improved scores at post-test, but no significant difference between groups was evident. For the educational measures that were available for analysis, no significant differences were apparent between groups at pre- or post-test. At pre-test, children in the comparison group performed significantly better than those in the intervention group on six of eight adaptive and behavioral measures; for four of those six measures, at post-test the comparison group performed significantly better than the treatment group. In general, children in both groups improved from pre- to post-test. The baseline differences between groups prior to intervention, as well as differences in level and duration of the intervention, render the results of this study inconclusive.

The case series (Brett and Laatsch, 1998) presents a model for introducing cognitive rehabilitation into the school setting. Teachers providing the intervention had received special training and were supervised by psychologists who specialized in cognitive rehabilitation. Ten students received the intervention twice a week for 20 weeks. Students showed significant improvement from pre- to post-treatment on one of nine laboratory-based neuropsychological tests.

In the survey study, parents of children with brain injury were asked what factors contributed to successful return to school for their children (Parkin, Maas, and Rodger, 1996). Fifty-three of 80 surveys sent were returned. Of 26 variables that might be associated with outcome within five domains, parents thought four were associated with successful return to school. Two of these were attributes of the school program -- presence of a reintegration aide and school attitude toward integration. The other two predictors were home medical aide and pre-trauma medical and behavioral condition. This result suggests that parents perceive attributes of the school program important to children's successful return to school.

Five case studies using patients as their own controls provided data about this question. In these studies, researchers measured target behaviors or abilities before introducing the intervention (baseline phase) and took the same measures during the intervention (treatment phase). An increase in target abilities during treatment suggests an effect of treatment for the individual being examined. In some cases, the intervention was removed and an additional measure was taken (return-to-baseline) to observe if a decrease in the target ability would occur in the absence of the intervention.

In one study (Glang, Todis, Cooley, et al., 1997), a program was introduced into the school environment to enhance social networks for three students with brain injury, producing an increase in number of social contacts and parent satisfaction during the treatment phase. A second study (Suzman, Morris, Morris, et al., 1997) provided cognitive and behavioral training to enhance problem-solving skills for five children with brain injury in a program delivered in a special educational setting. All students had a decrease in errors on computerized tasks during the treatment phase. In a third study (Franzen, Roberts, Schmits, et al., 1996), two children given a cognitive intervention performed significantly better on verbal memory tests during the treatment phase than during baseline and approached performance level of one uninjured comparison subject. In a fourth study (Feeney and Ylvisaker, 1995), student involvement in planning daily routines, photograph cues, and verbal rehearsal were incorporated into the established programs of three adolescents in a TBI school reentry project who were presenting severe behavioral problems. During treatment, frequency of challenging behaviors and aberrant behaviors decreased for all three students, and the amount of completed work increased. The reverse was observed during the return-to-baseline phase. In the fifth study (Glang, Singer, Cooley, et al., 1992), individualized direct instruction produced increased academic performance for three students in targeted instructional areas of reading, language, math, and keyboarding.

One comparative study, one case series, one survey, and five case studies provide limited data about the effect of special educational programs for children with TBI, with varied results. For the study that attempted to compare outcomes for two groups of children with TBI -- one that received an intervention -- the pre-treatment performance between the groups was too different to be able to draw conclusions from the results. In the case series, a treatment effect was observed on only one of nine measures. In the five case studies, all patients showed improvement on measures taken during intervention as opposed to pre-treatment measures. However, the observed effect cannot be generalized to a larger population of children. The lack of reliable data on the effectiveness of special education makes it difficult to develop or verify criteria for entry into such programs.

  • 4

    For children who have sustained traumatic brain injury, does the early identification of (a) the child's developmental stage at the time of injury; (b) the child's developmental stage at the time of assessment; and (c) the extent to which the injury has arrested the child's normal developmental process increase the ability to predict when the child will present the needs, behaviors, and problems resulting from brain injury?

Large, longitudinal cohort studies would provide the best information about the various aspects of development that influence the long-term outcomes of children and adolescents with TBI. Important features of such a study are a clearly defined cohort and completion of the study by most of the participants. Ideally, the six aspects of developmental outcome presented in Table 1 would be evaluated in such a study.

Unfortunately, any given study of developmental outcomes in pediatric TBI is usually limited to one or a few of the listed aspects of outcome. For example, we found a large number of longitudinal studies for some topics (for example, intellectual/cognitive, or language) but not for others. Sixty-one articles reporting data related to developmental issues in pediatric TBI were found; 51 were prospective, 4 were population-based, and 13 were multicenter, and 12 studies evaluated patients for 3 or more years.

Table 3. Description and rating of articles for question 4
DesignSampleAgeInjury
AuthorDateCategoryStudy lengthProspecretrosPopulat.SelectRangeSpanCompSevLocAgeSincef-u yrsAnalSum
(1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16)(17)
Thal1991452221-3y4332413230.0
Hudspeth1990101111-21y43515.0
Thatcher1991101112m-26y43515.0
Stiles1993352114-6y4302416528.0
Stiles1996352114-4.5y4302414528.0
Thompson1994252226.5-16y4210415528.0
Feldman1992422221-4y4332413530.0
Ew-Cob19892 3 412124m-5y2220110.5317.0
Prior19943 612126-16y0220020.5113.0
Bagnato19862 3 4 5 612128m-5y2210310.5318.0
Anderson19973 4 622122-7y3320321424.0
Bijur19963 5413410y4410212.5327.0
Klonoff19771 3 552122.7-16y2320225324.0
Ew-Cob19943 442121.5-14y2222223122.0
Rudel1974202117.5-17y1310000110.0
Brink1970201122-18y012001719.0
Stiles1991352113-4y4302414427.0
Stiles1988352114-5y4302415427.0
Stiles1985332112y4302412425.0
Kaufmann1993312227-16y422042423.0
Yeates1995312125-16y4320110421.0
Anderson1995332124-14y3220312322.0
Levin1988322226-15y4220421325.0
Levin1982312112-19y3120212216.0
Levin1979302116-18y22322.510218.5
Dennis1996302006-15y4322410422.0
Dennis198530100?020100048.0
Winogron19841 300105-18y1120110310.0
Riva1986302118-12y320130316.0
Woods198030111?010200028.0
Selz197930200?0400000410.0
Gaidolfi19803521018-27y4210117118.0
Bijur19963223410y43112110326.0
Ew-Cob1998402014-11y2322210318.0
Ew-Cob1987402115-15y2.52212.510318.0
Jordan19924021216-23y4321110219.0
Jordan1991402125-13y1321110216.0
Trauner1996402005-20y1132110213.0
Harris1996402218-14y2332210220.0
Eisele1998402114-17y1332110318.0
Chapman1992402219-18y2332210321.0
Hallett1997402216-22y1.53211.510217.0
Aram1987402115-16y13321.510217.5
Reilly1998402003-9y3332310320.0
Dennis1990402106-22y1301110414.0
Woods19794021010-25y2302010213.0
Chapman1998412126-9y3221311321.0
Jordan19944122117-50y33211120320.0
Campbell1990422215-16y1122111318.0
Chadwick19811 402327-17y1212110318.0
Jordan19964023210-18y2332210323.0
Filley19871 50112<18y2232010216.0
Nass1987502111-3y2132310420.0
Dennis19981 4 502116-15y33021.513418.5
Segalowitz19915011413-20y3100317115.0
Pettersen19915 602115-17y1321111215.0
Coster1994622211m-5+y2321220.5322.0
Kleinpeter19766221110-25y31213110118.0
Marchman1991422119m-22m3332311223.0
Asarnow19953 5 622228-16y3421311426.0
Klonoff19931 3 5 6222225-40y32313123324.0

NOTE: Key to rating categories can be found in Appendix F.

Because of the diversity of topics in this question and the large number of citations found in our search, we developed a system for rating the overall quality of each article on an ordinal scale and then selected the articles with the highest ratings for review in this section. The system is presented in Table 3, which gives basic information about each article. Column 3 lists the categories of development from the matrix in Table 1 addressed by each article. Columns 4 through 16 rate the utility of research for addressing developmental issues. For example, an article is considered better for finer discriminations in the chronological ages of participants (columns 9 and 13) or for following cases over a number of years with repeated measures (column 4). Providing critical information, such as age at injury (column 13), age at measurement (column 8), and the interval between injury and measurement (column 14), also raises the rating of a study. See Appendix F for a complete description of the ratings in each column of the table. The sum scores (column 17) are ranks, with a higher number signifying a better study.

We developed this system for rating articles to provide a method for selecting which articles were most likely to include reliable information about the long-term developmental outcome of TBI. It is not validated, and therefore its use is based on the unproven assumption that high ratings are correlated with other measures of quality. Validating such a system could be a useful part of a comprehensive systematic review designed to evaluate the large and diverse developmental literature.

To demonstrate how the system might be used, we selected seven articles that had the highest methodological scores for detailed review. These seven studies address four key issues in development and TBI. One evaluates the effect of focal brain damage on language development; two track the correspondence of brain growth with cognitive development; two demonstrate the presence of subtle, undetected deficits; and two use the growth trajectory method of analysis to evaluate development of a variety of cognitive and motor skills.

Effect of Focal Brain Damage on Language Development

The first study, which most closely addresses this research question, is a cross-sectional/longitudinal evaluation of language acquisition of 27 children suffering focal brain injury (Thal, Marchman, Stiles, et al., 1991). The patients had injuries in the prenatal period or within the first 6 months of life, were recruited from three research sites, and were remarkably similar in age at injury, nature of injury, and age at observation. Ten children (6 boys, 4 girls) were followed longitudinally, and another 17 (8 boys, 9 girls) provided cross-sectional observations at the three phases of language development being studied. Observations were made from the age of 12 months until 35 months, taking the children through the three main developmental phases of early language acquisition:

  • Phase one: 12-16 months (onset of expressive language, especially naming).

  • Phase two: 17-24 months (rapid increase in vocabulary and appearance of verbs and adjectives).

  • Phase three: 24-35 months (period of grammar acquisition).

All results were compared with well-established norms for uninjured children. The data collected are based on occurrence of words. The results demonstrate a predictable pattern of delays and deficits in language acquisition for children up to the age of 3 as compared with uninjured children, including the following:

  • Clear evidence for delays in lexical comprehension and production in all cases.

  • More dissociation of comprehension and production in language in all cases.

  • Unusual difficulty mastering predication in many cases.

  • Tendency to use many closed-class words, suggesting reliance on holistic/formulaic speech in many cases.

  • No differential effect of size of lesion on language development.

  • Association between right-hemisphere (RH) lesions and increased use of closed-class words, implying reliance on well-practiced but under-analyzed formulaic speech.

  • Slightly better comprehension of language with RH lesions compared with left-hemisphere (LH) lesions.

  • Association of left posterior (LP) lesions with greater and more protracted delays in expressive language.

  • No differential effect of LP lesions for lexical comprehension.

The main strengths of this study are its close control of sampling, timing of observations, and reliable measurement.

Correspondence of Brain Growth and Cognitive Development

Two studies (Hudspeth and Pribram, 1990; Thatcher, 1991) establish the base rate measures of brain growth at each stage of development that are necessary to detect the developmental effects of injury. These researchers used the electroencephalogram (EEG) to show that spurts of growth in the brain correspond to phases of cognitive development in children. Using techniques developed by Matousek and Peterson (1973), they were able to distinguish differential growth in four different regions of the brain (parieto-occipital=PO, temporo-temporal=TO, centro-central=CC, fronto-temporal=FT). They found that quite distinct spurts and plateaus occur in the growth of these regions, and that, together, the combination of growth in all four regions make a pattern that closely follows the chronological ages identified by Piaget and the neo-Piagetian students of cognitive development. The data are based on cross-sectional records of 561 normal children taken at 6-month intervals from the ages of 1 to 21 years. This work has the potential to illuminate the effects of focal brain lesions during childhood.

Subtle Deficits

Two studies (Stiles and Thal, 1993; Stiles, Stern, Trauner, et al., 1996) revealed the presence of subtle, hidden deficits in cases of apparently normal performance in pediatric TBI with focal brain damage. In one study (Stiles and Thal, 1993), participants were 27 injured children from three sites and 10 control subjects who did not have TBI. All injuries occurred prenatally or in the first 6 months of life. This study demonstrated a significant delay in the acquisition of expressive language in the period of 1 to 2 years of age in children with left posterior injury, compared with uninjured children and those with left anterior lesions.

The same study demonstrated that the apparently normal performance in a drawing task by four 3- and 4-year-old children with right-hemisphere (RH) injury was actually the result of learned routines or "formulae" that the children had perhaps learned to use as a strategy to manage their deficits. These routines failed, however, when the children were given tasks requiring a nonstandard response (like being asked to draw an "impossible house"). Uninjured children of the same age and four similar children with left-hemisphere (LH) injury were able to perform the nonstandard task. They drew houses with the roof underneath and the chimney coming out the wall. But the RH children could only make one of two responses: they could draw another standard house, or they could use some other drawing formula (like a flower or an airplane) to make a house which was more bizarre than "impossible." This study is important not only for illuminating a concealed deficit in spatial and cognitive processes but also for understanding the social-emotional development of a child who resorts to bizarre responses when his or her capacity to respond fails.

The second paper (Stiles, Stern, Trauner, et al., 1996) also suggests that subtle deficits could underlie apparently normal performance in cases of focal brain injury in children. It relates two studies, one of children ages 4 and 5 years with focal brain injury (n = 16, 9 LH, 7 RH) before 7 months and the other of similar children ages 5 and 6 years (n = 11, 5 LH, 6 RH). Both groups were compared with uninjured controls on spatial grouping and construction tasks. In the younger group, the RH injured cases lagged behind controls on both simple and complex tasks. The LH cases performed as well as controls on both tasks but used different processes for the complex tasks than controls. In the older group, both lesion groups performed as well as controls, but both used different spatial processes from uninjured children, which were indicative of developmental delay.

Growth Trajectories

Two studies used the analytic method of growth modeling and growth trajectories in their research. One (Thompson, Francis, Stuebing, et al., 1994) followed 49 children, ages 6 to 15, in a prospective study of motor, visual-spatial, and somatosensory skills. By analyzing individual growth curves, researchers were able to control for differences in the ages of the children, and they discovered systematic, non-linear changes in growth that were strongly related to injury variables. This is an important advance in method, allowing the management of variations within a sample of children undergoing different rates and kinds of development because of differences in age and precocity. By this method, the analysis was able to account for up to 93 percent of the growth parameter variance and take into account the individual differences in the children; it revealed nonlinear trends in development after injury.

The second study (Feldman, Holland, Kemp, et al., 1992) applied a method of growth modeling and the use of growth trajectories to a longitudinal evaluation of nine children with unilateral brain injury occurring before or just after birth. The children were followed for up to 4 years of age, and resulting data were compared with normative data for uninjured children on the growth of syntactic abilities and vocabulary size. The use of growth curves and individual growth trajectories allowed for great flexibility in the analysis of data, including problems of missing data and individual variability among the children. Although this was a small-scale study with only nine cases, researchers used a narrowly defined sample, followed them longitudinally with intense observations, and used innovative methods of growth curve analysis.

One longitudinal, multicenter study assessed residual neurological deficit in children with TBI 5 years after injury and suggested the predictability of deficits in acquisition of language within that time frame. Two large, single-center observational studies demonstrated the correspondence of early brain growth with cognitive development. Two small, single-center studies revealed subtle deficits in spatial and construction capabilities and in responding to nonstandard requests in children with TBI. Finally, two multicenter studies demonstrated the use of growth trajectory analysis in accounting for individual differences and changes over time when evaluating outcome from TBI.

We suspended the retrieval process for this question before reaching the limits of the body of literature. Of the relevant articles located, most were identified by manually searching reference lists and bibliographies and with the advice of peers, rather than through an electronic search. More manual searching might be necessary to net a complete set of references in each category of development covered by this question.

As stated, the ideal method for obtaining information about the influence of development on recovery from TBI in children would be large, longitudinal studies with clearly defined cohorts that address the six aspects of developmental outcome presented in Table 1. The studies we acquired for this question are mainly small; the samples were selected based on specific criteria, and therefore the results generalize only to like members of the population.

  • 5

    Does the provision of support to families of children with brain injury enhance the family's ability to cope and reduce the burden of illness?

No randomized controlled trials were located that compared the effect of support to families with no support. However, one trial using random assignment evaluated the differential effect of two forms of support to families. In addition, two prospective studies contained indirect evidence about the effect of provision of support.

In the study of the effect of two forms of support on family outcomes (Singer, Glang, Nixon, et al., 1994), 15 parents of 9 children and adolescents with severe brain injury (age range 21 months to 20 years) were randomly assigned to either an information and emotional support group (n = 8) or a stress management group (n = 7). The stress management intervention included instruction in coping skills and parent-to-parent self-help and social support. The information and emotional support group focused on parents' understanding of the problems of brain injury, with a component of social support. The primary difference between interventions was that one focused on the parents' needs and the other on the parents' understanding of the children's needs. Outcome measures were the Beck Depression Inventory (BDI) and the State Scale of the State-Trait Anxiety Inventory (STAI). Analysis of covariance was used to analyze the data, with pretest scores entered as covariates. The stress management group experienced significantly greater reductions in depressive symptoms and anxiety symptoms than the information group, as measured by the BDI and State Scale of the STAI. Results suggest that an intervention for parents of children with brain injury may do more to reduce the burden of illness if it focuses on the needs of the parents as opposed to those of the child.

One prospective, observational study evaluated changes in family functioning and predictors of family outcome 3 years following the traumatic brain injury of a child (Rivara, Jaffe, Polissar, et al., 1996). The families of 81 children (ages 6 to 15 years) with TBI were consecutively enrolled in the study from two tertiary care centers. Family interview ratings and standard measures of family and child functioning were completed at 3 months, and 1 and 3 years. Significant direct correlations were found between the presence of social support and eight of nine measures of family functioning at 3 years postinjury.

The main finding of a second prospective study that evaluated the impact of childhood TBI on work and family finances (Osberg, Brooke, Baryza, et al., 1997) was the association between severity of injury and high risk for work and financial problems. Eighty-two children who were treated at one of two trauma centers for TBI were evaluated while in the hospital and at 1 and 6 months postdischarge. Families were surveyed at 1 and 6 months about work and finances. The relevant finding was that families insured by a health maintenance organization (HMO) reported significantly fewer financial problems associated with their children's TBI compared with families who had other forms of insurance. Subsequent analysis confirmed no significant difference between coverage groups in the child's age, injury severity, number of impairments, acute hospital length of stay, discharge location, and most importantly, socioeconomic status. The authors suggested that the presence of the case management component of the HMO system served to help the family negotiate the care system and buffer them from complex paperwork.

Wade and colleagues (1995) reviewed five mpirical investigations published between 1975 and 1995 of the effects of pediatric TBI on the family. Studies cited in the review typify the literature about family function and TBI; they evaluated family/parenting stress, family burden, family functioning, or parent or sibling psychological adjustment following TBI. In general the five studies suggest an association between severe traumatic injuries and difficulties in family functioning as well as the functioning of individual family members. However, many families do not experience a deterioration in functioning. Factors such as poor preinjury family functioning (Rivara, Fay, Jaffe, et al., 1992) and the emergence of parental psychological disorder during the acute phase of the injury (Hu, Wesson, Kenney, et al., 1993) were associated with an increased risk of long-term disruption and dysfunction. Thus, the review provided information about predictors of family function, but it did not specify whether external aid improves family functioning.

Two studies introduce a characteristic of family preference that may effect utilization of available support. Waaland, Burns, and Cockrell (1993) evaluated and compared the needs of high- and low-income families following pediatric brain injury. The caregivers of 49 children ages 3 to 16 were recruited from the emergency room, intensive care, and rehabilitation units of hospitals in a metropolitan area. Caregivers' most important needs included clear information, input into therapy, and understanding from professionals and teachers. Personal needs, family support, and future patient-related concerns were devalued by both high- and low-income groups. The shared priorities and devaluation of personal needs common to these diverse socioeconomic groups may diverge as their children re-integrate into communities with varying levels of resources. Overall, information was the form of external aid considered most important by families during the initial phase following TBI.

A second prospective study (Wade, Taylor, Drotar, et al., 1996) found that families of children with severe TBI (n = 44) are significantly more likely to express the need for help than families of children with moderate TBI (n = 52) or families of children with orthopedic injuries (n = 69). These families expressed a need for concrete services such as child care, housekeeping, and financial assistance. However, only 15 percent of families whose child had sustained severe TBI, 6 percent of those whose child had sustained moderate TBI, and 6 percent of those whose child had sustained an orthopedic injury expressed a need for counseling or emotional support. Evaluation in this study occurred 1 month following injury; changes in family priorities may occur as they encounter the lifelong tasks of caring for a child with chronic disabilities. A longitudinal study could more adequately examine family priorities for kinds of support. These two studies suggest that research about family support should incorporate what families want and will use and how to encourage utilization of services with demonstrated utility.

The question of the effect of support on families of children with TBI has not been subjected to experimental research protocols with samples large enough to make strong, general statements. One small study compared two forms of support with each other, but no study compared the outcome of support to no intervention. There is no direct evidence about this question, but two prospective studies indicate a direct correlation between the presence of social support and better family function. A recent investigation about support to families of adults with TBI demonstrated that such questions can be evaluated using a randomized controlled trial study design (Wade, King, Wenden, et al., 1998). The study also showed a significant positive effect of the support intervention, encouraging further study of such interventions with child and adolescent populations.

We did not address the reciprocal effect of family functioning on outcomes for the child with TBI in this question. A number of studies have demonstrated a relationship between higher family function and better outcomes for the injured child (Taylor, Drotar, Wade, et al., 1994) and argue for provision of support to families as an intervention for the child.

Chapter 4. Discussion

Conclusions

Our goal was to conduct a systematic review of the literature about child and adolescent TBI oriented around key research questions and to create a tool that could be used in future evidence-based investigations about recovery from TBI in this population. We prepared a matrix to be used to organize research according to the developmental dimensions and age categories addressed by studies. With the assistance of technical experts, we specified key questions about child and adolescent TBI rehabilitation and defined patient populations, interventions, and outcome measures. We compiled and categorized literature from seven databases -- medical, educational, and psychological. We reviewed the strongest of the studies we found containing data about key questions and created an evidence table template for use in future comprehensive studies.

Quality of the Existing Literature

In general, studies have not been conducted with designs capable of providing evidence for effectiveness of interventions for children and adolescents with TBI. Because the focus of this project was effectiveness, many studies were excluded because they did not provide experimental evidence that could be used to guide practice. The published literature for this topic is primarily exploratory. It provides descriptions of programs that are widely accepted, logical approaches to treatment that have not been validated either through experimental design or in carefully controlled observational studies. The clinical experience represented in the published literature that has guided the design of intervention programs should generate the important hypotheses for controlled studies.

We did not find that assessment is any more standardized in the child and adolescent literature than in studies about adults. Some instruments are designed specifically for children, and others are a child's version of an adult instrument. The vast array of instruments used and their lack of standardization, superimposed upon the complexity of assessing children discussed earlier (Ylvisaker and Gioia, 1998), combine to illustrate the difficulties in assessment of technology for children. We suggest that questions about differences in evaluation between children and adults are premature. The important questions that apply to both adult and pediatric populations are, how and to what extent should assessment be standardized? What cognitive tests are the best predictors of function in life settings?

Literature Retrieval

The literature on child and adolescent TBI -- found in databases spanning medicine, education, and psychology -- is not organized to facilitate an exhaustive systematic review. However, with respect to four of our five key questions (questions 1, 2, 3, and 5), we believe this review encompasses the relevant studies that contain data from the sources we used. Sources of information regarding special education placement patterns (question 2) other than scientific literature, such as State registries that may account for regional differences and give a more accurate tally of prevalence, need to be accessed and evaluated. Without knowing the extent of TBI in children and adolescents, we cannot estimate the proportion of children who are receiving special education. Without knowing the number of children with TBI who truly need special education, we cannot know if the current referral rate is adequate.

As discussed in Chapter 3 (Results), only 11 of the 61 studies reviewed for question 4 were acquired through applying the search strategy to bibliographic databases. Fifty studies were found from manual methods described in this report. We suspended the search for articles before exhausting all manual methods for acquiring them; therefore, the studies surveyed for question 4 may not constitute the entire body of relevant literature, and a complete, systematic review addressing subquestions within that topic is recommended.

Recommendations for Including the Developmental Perspective in a Systematic Review

Table 4. Relevance of selected studies to topics and stages of development
Developmental Category
Chronological developmental stageSomatic: neuro/hormonalSomatic: sensorimotorIntellectual/cognitiveLanguageEmotional/behavioralSocial
Infancy: 0 to 24 monthsHudspeth,'90Thatcher,'91Thal,'91Feldman,'92Marchman,'91
Preschool childhood:2 to 5 yearsHudspeth,'90Thatcher,'91Anderson,'97Anderson,'95Stiles,'96Stiles,'93Stiles,'91Stiles,'88Anderson,'97Thal,'91Feldman,'92Reilly,'98Anderson,'97
School-age childhood: 6 to 11 yearsHudspeth,'90Thatcher,'91Thompson,'94Anderson,'97Anderson,'95Stiles,'93Kaufmann,'93 Asarnow,'95 Levin,'88Dennis,'96Riva,'86Anderson,'97Reilly,'98Chapman,'98Asarnow,'95Anderson,'97Kleinpeter,'76 Asarnow,'95
Puberty and adolescence: 12 to 19 yearsHudspeth,'90Thatcher,'91Klonoff,'93Thompson,'94Kaufmann,'93Anderson,'95 Asarnow,'95 Klonoff,'93Levin,'88Dennis,'96Riva,'86Segalowitz,'91 Asarnow,'95 Klonoff,'93Kleinpeter,'76 Asarnow,'95 Klonoff,'93
Given the scope and depth of information about development during childhood and adolescence, developmental science must be considered at all junctures of investigation about children and TBI. We developed a matrix to assist in identifying information gaps in the literature that could be addressed in future studies. To help locate these gaps, we identified all studies that spanned only one developmental stage at time of measurement and at time of injury and placed them in the appropriate cells of the developmental matrix from Table 1 (refer to Table 4). In such studies the participants were either selected or sorted in such a way that deficits in one stage of development could be assessed without being confounded with deficits in other stages. The result, shown in Table 4, displays where work that has controlled for the confounding variable of age has been concentrated and where it is lacking.

An example of a gap in current research on pediatric TBI -- apparent in column one of the matrix in Table 4 -- is the neglect of hormonal action on somatic, emotional, behavioral, and social recovery. Although the three cited articles span all developmental stages, they treat the nervous system only. A developmental perspective, as shown in Table 4, makes a gap in the research immediately apparent.

The matrix in Table 1 was designed as a tool to orient various investigations about children and TBI. It may be too complex for some research questions and too simple for others. If the matrix is to be used, we suggest that investigators consider how it might be altered to better suit their research questions.

An external file that holds a picture, illustration, etc., usually as some form of binary object. The name of referred object is f7_f002.jpg.

   Figure 2. Rating of pediatric TBI literature on developmental issues

The ratings of reviewed studies, shown in Table 3, allow us to display an important trend found in this sample of the literature: the steady increase in the sophistication of the research over the past 2 decades. This is shown graphically in Figure 2, which displays article ratings plotted against the year of publication. The vertical axis shows the rating of each article, with a larger number signifying a higher rank. The trend to higher quality research over time is apparent even in the work of individual authors with multiple publications in those years. The rank-order correlation between ratings and time is .47 (p < .01). In spite of this encouraging trend, significant problems still remain, for example, in sampling, due to the great difficulty of working with clinical populations. Notable exceptions include Bijur's population study (1994); large, multicenter samples (Klonoff, Low, and Clark, 1977; Klonoff, Clark, and Klonoff, 1993; Asarnow, Satz, Light, et al., 1994); and the large single-center, consecutive samples obtained by Dennis (1985), which provide prototypes for designing future research projects.

Chapter 5. Future Research

Investigations to identify effective approaches to the rehabilitation of children with TBI may benefit from the literature in other related fields. Future research could be guided by themes that have emerged across many disability groups. Although TBI has its unique features, it shares many characteristics with other disabilities. The task is to identify the shared characteristics, and include what has been learned in other fields when designing interventions. One example is social skills training. Certain models for social skills training and cognitive rehabilitation have been shown to be ineffective with people who have other, similar disabilities, yet these models are being used in TBI rehabilitation. At the very least, the failure of these interventions in other fields should call into question their effectiveness with TBI. Similarly, we should pay attention to, and systematically test, successful approaches in other fields.

Three gaps in the literature pertaining to child and adolescent TBI define priorities for future research.

The field of developmental psychology provides a technology for designing studies and analyzing data that accounts for individual variation. The following are recommendations for research about children and adolescents with TBI that incorporates this technology.

Life-Span Developmental Psychology and the Study of Child and Adolescent TBI

Interventions

Application of Life-Span Developmental Psychology to child and adolescent TBI introduces the study of predictors of individual growth curves (both stability and change), including recovery as a function of an intervention, spontaneous recovery, and short- and long-term outcomes. Using a life-span approach to study the effectiveness of interventions in pediatric TBI requires that we:

  • 1

    Distinguish between stability and change that would have occurred without intervention from that which is a direct result of the intervention (Montado and Schmitt, 1982).

  • 2

    Determine whether there are life periods in which certain interventions are more or less efficacious.

  • 3

    Attempt to identify which individual characteristics (e.g., age, education level, etc.) are associated with improved outcomes from treatment.

Research regarding the effectiveness of interventions in child and adolescent TBI should be designed to collect information that could determine if individual factors (e.g., child temperament or intelligence), historical/environmental events (e.g., family or school environment), and/or nonnormative events (e.g., death in the family or divorce) account for longitudinal profiles of recovery, problems, and outcomes. In such studies, interventions following child and adolescent TBI would be considered as systems in past and/or present environments, and TBI would be considered one very significant nonnormative event.

Consideration of these potential interacting influences on individuals throughout the life course would result in a developmental effectiveness study that would ideally follow children with TBI and a comparison group throughout the remainder of life and would repeatedly measure outcomes of interest. To go beyond linear growth curves to understand nonlinear change, including acceleration or deceleration of growth (e.g., Thompson, Francis, Stuebing, et al., 1994), outcomes of interest would need to be measured a minimum of three times in addition to a baseline measure. Given the difficulty of completing such studies, the perspective of life-span developmental psychology suggests some standards for research that can strengthen studies of child and adolescent TBI.

Elements of Research Designs

Prospective Longitudinal Research Designs

More information is needed about changes among the pediatric TBI population in domains such as cognitive, motor, emotional, and social performance. In all cases, performance must be conceptualized as time-dependent. However, we cannot rely on retrospective studies using registries or medical chart reviews to test hypotheses about age changes following interventions (Montado and Schmitt, 1982). To adequately test hypothesized age changes as a result of interventions, prospective longitudinal research designs are required. Hypotheses that could be tested with these designs include predictions about the effects of interventions on social or cognitive growth curves, predictions about the differential effectiveness of a variety of interventions on individual profiles of change or patterns of profiles, and predictions about interrelationships between changing environments (including interventions) and changing individuals.

Internal Validity and Comparison Groups

Threats to internal validity are defined as those that make it difficult to determine "whether or not the relationship observed is accurately or validly identified or interpreted" (Baltes, Reese, and Nesselroade, 1977, p. 37). Baltes and colleagues note that "maturation" (age change that naturally occurs) is usually considered a threat to internal validity. When studying the effectiveness of interventions, the goal is to differentiate the maturation effects from the links between the intervention and time-dependent outcomes. Therefore, maturation effects complicate the study of the effectiveness of pediatric TBI interventions, and complex research designs, such as quasiexperimental research and advanced statistical techniques, are needed to tease apart change in outcomes related to recovery from change due to maturation.

Since the use of quasiexperimental designs with closely matched controls does not account for all potential bias and error (Campbell and Stanley, 1966) and because randomized controlled trials have not been done, some researchers have suggested the use of "natural experiments" (Michaud, 1994). Natural experiments compare the efficacy of treatment approaches by grouping children with TBI by their natural access to acute care or rehabilitative services (e.g., as a result of regional differences in standards of care). Given the apparent variety in managing children following TBI, natural experiments could yield valuable information, especially if they are designed to assess intraindividual change. Adequate control groups would still be necessary to differentiate maturation that would have occurred regardless of intervention from growth patterns that are a direct result of intervention efforts.

Statistical Methods

The approaches we suggest will result in complex research designs and data sets in which children with and without TBI are followed for extended periods of time with multiple times of assessment. In addition, the children, and possibly their families, teachers, or friends, would be asked to complete multiple assessments at each time of measurement. The focus becomes predicting individual growth curves from antecedent variables such as age at injury, initial child status, environmental factors (e.g., family functioning), and intervention techniques. Hence, the focus is on the prediction of growth curves and trajectories in performance among children following TBI compared with control children and/or children with TBI participating in alternative interventions. To maximize these data, several statistical techniques are available including growth curve modeling, cluster analysis, and time-series analysis.

Growth Curve Models

One technique used for repeated measurements of intervally scaled data is growth curve modeling (sometimes called general linear mixed models, multilevel models, or hierarchical linear models [HLMs]) (Bailey, Burchinal, and McWilliam, 1993; Bryk and Raudenbush, 1992; Burchinal and Appelbaum, 1991; Francis, Fletcher, Steubing, et al., 1991; Thompson, Francis, Stuebing, et al., 1994; Willett, Ayoub, and Robinson, 1991). Several software applications are available to complete growth curve modeling, including a mixed modeling procedure (PROC MIXED) available in SAS/STAT software1 (SAS Institute, Inc., Cary, NC; Littell, Milliken, Stroup, et al., 1996), HLM (Bryk and Raudenbush, 1987), and structural equation modeling software (see McArdle and Epstein, 1987; Willett and Sayer, 1994).

Typically, these methods have been used to describe growth curves among a population or to compare the average growth curve of one group to another (e.g., an intervention and a control group or males and females) (Bailey, Burchinal, and McWilliam, 1993; Francis, Fletcher, Stuebing, et al., 1991). Other, less common applications of this method can answer questions about interindividual differences in intraindividual change. For example, the target of study can be variation among individuals in their patterns of change over time. Sample questions include whether the initial level of an antecedent variable (e.g., initial child status, injury severity, or acute rehabilitative efforts) launches the trajectory of an outcome of interest (e.g., performance IQ or visual-motor tasks). This has been called a launch relation. One also can ask whether a measured variable must be maintained at some level to promote a more positive change pattern (e.g., some component of rehabilitation; an ambient-level relation). Finally, one can investigate associations between multiple change processes occurring simultaneously (e.g., time-dependent cognitive performance and time-dependent social performance; a change-to-change relation) (Connell and Skinner, 1990; Skinner, Zimmer-Gembeck, and Connell, 1998; Zimmer-Gembeck, 1998).

A recent example of the use of HLM to study launch relations was completed by Thompson and colleagues (1994). In this study, researchers expected that pupillary status at admission, Glasgow Coma Scale 24 hours postinjury, the duration of impaired consciousness, and age at injury (6 to 15 years) would predict intraindividual change in motor, visual-spatial, and somatosensory skills. Throughout the following 5 years, motor, visual-spatial, and somatosensory skills of children with TBI were assessed up to seven times. Instead of comparing mean outcomes between groups of children formed based upon predictor variables, individual growth curves in performance were the outcomes of interest. The focus of the study was shifted from "the differences between performance at fixed time points to the individual growth trajectory" (Thompson, Francis, Stuebing, et al., 1994, p. 333).

Thompson and colleagues (1994) claimed that the measurement of outcome as a single endpoint might result in artificially weak relationships between injury characteristics, other hypothesized predictors, and outcome because of the insensitivity to change processes. Therefore, they designed their study to analyze intraindividual patterns of change. They demonstrated that growth curves in motor, visual-spatial, and somatosensory tasks were launched by age at injury, initial status, and characteristics of injury. They also demonstrated that rate of recovery differed by age at injury, and age at injury interacted with injury severity to predict rate of recovery for some outcomes. Controlling for initial status improved estimates of the influences of injury severity and age at injury on growth curves. However, this study did not attempt to differentiate recovery from maturation, and no data on treatment or interventions were included. Future research on the effectiveness of interventions in pediatric TBI should build upon the approach of Thompson and colleagues (1994) by including control groups and the assessment of interventions (see also Yeates, Taylor, Drotar, et al., 1997 for another example).

Cluster Analysis

A second promising approach to take advantage of repeated measures of intervally scaled data is cluster analysis (Bergman, Eklund, and Magnusson, 1991). Cluster analysis can be used to empirically capture distinct profiles based upon patterns of change. Clustering algorithms are used to classify children based upon repeated measures of outcomes of interest; these clusters could be compared to determine whether they differ on characteristics of interest such as intervention techniques, initial status measures, family characteristics, or other outcomes of interest. Although we did not locate a study that used this technique to evaluate pediatric TBI, we found a study of self-esteem during adolescence that is an example of the utility of the method. Hirsch and DuBois (1991) used cluster analysis to identify patterns of change in self-esteem with four times of measurement over a 2-year period. They identified four distinctly different patterns of change in self-esteem and demonstrated that boys were overrepresented in the group with sharply increasing self-esteem while girls were overrepresented in the group with sharply decreasing self-esteem. This design might be useful in discovering what variables (e.g., sex or age) associate with patterns of recovery in child and adolescent TBI.

Time-Series Analysis

Time-series analysis could be used to investigate causal links between intervention components and performance among individual children over time (Baltes, Reese, and Nesselroade, 1977). The use of time-series analysis also could improve our understanding of the particular process that occurs during interventions and illustrate whether and by what means interventions directly affect the performance of children with TBI. Time series analysis relies on an almost continuous collection of data and results in a high number of measurements of outcomes of interest (50 or more is ideal). Therefore, this technique is quite detailed, but studies could be designed to repeatedly measure a small number of children participating in interventions that are specifically designed to improve particular outcomes. This technique could provide needed detail on the influences of interventions on performance and recovery of children with TBI. Again, we found no studies in the pediatric TBI literature that used this technique. In a study by Schmitz and Skinner (1993), a small subset of children (ages 9 to 12) completed 50 or more measurements of their objective and subjective effort in school, objective and subjective performance in school, attributions they made regarding the reasons for their performance, and perceived control in the classroom. Measures were completed both before and after every graded assignment in school. Time-series analysis was used to determine causal links between perceived control, effort, and performance. An application of this technique in the study of the effectiveness of pediatric TBI interventions might be to study the relation between actual and subjective level of children's and families' efforts in intervention activities and outcomes predicted to occur as a consequence of the intervention activities.

Measurement Equivalence

In order to study growth curves and trajectories, it is ideal to have outcome measures that are intervally scaled and developmentally appropriate. One of the problems in studying growth curves is the difficulty in finding intervally scaled measures that are equally applicable, reliable, and valid in children of various ages and that are known to measure the same construct at different ages (Bergman, Eklund, and Magnusson, 1991; Taylor and Alden, 1997). In developmental psychology, this is known as measurement equivalence (Baltes, Reese, and Nesselroade, 1977). For example, Bergman and colleagues (1991) used a simple mathematical problem to measure inductive-deductive ability at age 10 and numerical ability at age 15. The use of measures like this results in growth curves that indicate the measurement of changing constructs as opposed to recovery or development of a single construct. In other words, "is it the people themselves or what the test is measuring that has changed?" (Baltes, Reese, and Nesselroade, 1977, p. 157). A related problem is the use of measures that are easier for older children or less severely injured children to complete than younger or more severely injured children. As a result, measurement could easily become confounded with age at injury, age at testing, or injury severity.

Clearly, when studying intraindividual change, much thought must precede the selection of measurement instruments, and the choice of measures should be based on sound theoretical constructs. Because measurement equivalence is difficult to validate, researchers should include techniques that provide some evidence of equivalence but acknowledge the possibility of measurement problems. Given the lack of standard measures in assessing child and adolescent TBI, measurement development is necessary in order to expand the study of interventions to emphasize intraindividual change and interindividual differences in intraindividual change (Michaud, 1995; Taylor and Alden, 1997; Ward, 1994).

Conclusion

Large longitudinal studies and controlled experimental research that incorporate important concepts from developmental science are needed to investigate specific questions about the effectiveness of treatments for TBI in children and adolescents. Methods for designing studies and evaluating data provided by life-span developmental psychology may be well suited for the study of recovery from TBI in this population.

Appendix A: Technical Expert Panels

Local Panel

  • Anita Asmussen, MA

  • Speech Pathologist

  • Emanuel Hospital

  • Janice Cockrell, MD

  • Pediatric Physiatrist

  • Medical Director, Pediatric and Adolescent Rehabilitation

  • Emanuel Children's Hospital

  • Don Lange, PhD

  • Neuropsychologist

  • Margaret Sutko, PhD

  • Neuropsychologist

  • Emanuel Children's Hospital

  • Robert Butler, PhD

  • Psychologist

  • OHSU/Doernbecher

  • Colleen Hanson, EdD

  • Legacy Health System

  • Portland Public School System

  • Shuana Perkins

  • Parent

  • Kathy Ware, MS

  • Speech-Language Pathologist

  • Portland Public School District

National Panel

  • Robert DePompei, PhD, CCCSLP/A

  • Professor, School of Speech-Language

  • Pathology and Audiology

  • University of Akron, Ohio

  • Marilyn Lash-Cluett, MSW

  • Director, L & A Publishing/Training

  • Wolfeboro, NH

  • Assistant Clinical Professor, Department of Physical Medicine and Rehabilitation

  • Tufts University School of Medicine

  • Boston, MA

  • Linda Michaud, MD

  • Director, Pediatric Physical Medicine and Rehabilitation

  • Children's Hospital Medical Center

  • Cincinnati, OH

  • Eldon Schulz, MD

  • Chief, Pediatric Physical Medicine and Rehabilitation and Developmental Pediatrics

  • University of Arkansas for Medical Sciences

Appendix B: Key Questions

1. Does the application of early, intensive medical rehabilitation in the acute care hospital improve outcomes for children with TBI?

Rationale: The timing and intensity of the application of rehabilitation for children and adolescents with brain injury in the acute care hospital may vary as a function of geographic location, treatment facility, payer protocol, or other factors. Evidence that early, intense rehabilitation improves outcomes could provide a basis for provision of the intervention as a standard practice.

Definitions: Early applies to treatment extending from admission into the emergency department to discharge from the acute care hospital ward.

Intensity - Levels of the intervention vary in intensity based on (a) whether the rehabilitation intervention was directed and managed, either by a pediatrician or pediatric physiatrist, (b) number, kinds, and frequency of methods applied, and (c) coordination of a team-based, transdisciplinary set of methods which produces a "milieu effect."

Medical rehabilitation is an intervention that utilizes methods including, but not limited to, physical therapy, occupational therapy, and speech therapy. Medical rehabilitation services may be provided in the acute medical setting, and in the in- and out-patient setting.

Patient Population: Children whose onset of traumatic brain injury occurred between the ages of 2 and 18 years, whose injury severity warranted admission to a hospital emergency department and subsequent transfer to acute care.

Outcome Measures: Presence or absence of complications (i.e., skin problems, pneumonia) Health status at discharge from hospital (age-appropriate motor skills, ADLs, play skills, social interaction, behavior, communication, and measures of cognitive function) Long-term measures of impairment and disability (reintegration into school, family, and social groups; academic achievement, transitions through developmental stages) Measures of functional independence

2. For children diagnosed with traumatic brain injury, what is the proportion provided special education that is designed to accommodate the needs of TBI?

Rationale: A gap is evident between child and adolescent TBI prevalence data and the numbers of children diagnosed with TBI who are receiving special education services. The concern is that children with TBI are being returned to their schools without adequate provision for their needs.

Definitions: We define "special education designed to accommodate the needs of TBI" as a school or program that has the benefit of being informed by professionals who are trained in and/or understand the needs specific to children with TBI. Special education may be provided in a number of different ways, including through an Individual Education Program (IEP). Children may be reintegrated into their pre-injury classroom, be placed in a separate class with other children with disabilities, receive private tutoring, or attend classes provided by the long-term care facility in which they live.

Patient Population: Children whose onset of traumatic brain injury occurred between the ages of 2 and 18 years.

Outcome Measures:

  • 1

    Placement patterns for children diagnosed with TBI.

  • 2

    Characteristics of special education, such as (a) was the assessment appropriate to TBI, (b) was the assessment used to help create the program, and (c) are the people who implement the program trained in caring for and educating children with TBI?

3. Do children with traumatic brain injury who are provided special education that is designed to accommodate the needs of TBI have better outcomes than (a) those provided special education that is not so designed, and (3) those who do not receive special education?

Rationale: Some schools have professionals who are trained in the care and recovery process of children with TBI, and can contribute that knowledge to preparing and implementing the special education programs. This question seeks evidence that outcomes are better for children with TBI who are cared for in a school system with such resources than those who are not.

Definition: See Question 2.

Patient Population: Children whose onset of traumatic brain injury occurred between the ages of 2 and 18 years, with a functional status that allows for some level of pursuit of academic development.

Outcome Measures:

  • Academic achievement

  • ADLs

  • Peer integration and social functioning

  • Play skills

  • Behavior

  • Communication and speech

  • Motor skills

  • Cognitive capabilities

  • Functional capabilities

  • Long-term disposition (i.e., do they remain in the school system or drop out; have they been referred to the mental health system; are they in the juvenile correction system?)

4. For children who have sustained brain injury, does the early identification of (a) the child's developmental stage at the time of injury, (b) the child's developmental stage at the time of assessment, and (c) the extent to which the injury has arrested the child's normal developmental process increase the ability to predict when the child will present the needs, behaviors, and problems resulting from brain injury?

Rationale: Specific cognitive capabilities, and performances consistent with those capabilities, are expected to emerge for children at predictable intervals. A child with brain injury may function without presenting deficits during an earlier phase of development, masking the fact that the developmental process has been arrested. Deficits resulting from brain injury may surface when the child reaches a chronological age at which educators and family members expect performances beyond the cognitive capabilities of the child. If accurate, early identification of the child's developmental stage, both at the time of injury and time of evaluation, enhances the ability to predict when problems are likely to surface, educators and family members could use that information to design interventions that account for damaged cognitive capabilities and their behavioral manifestations.

Definitions: Developmental Stages. A number of schemas for understanding childhood development exist. Two that will be used in this review are Jean Piaget's theory of cognitive development (1952), and the model for neurodevelopment in children articulated by Ronald Savage, Ed.D.

Patient Population: Children whose onset of traumatic brain injury occurred between birth and 18 years.

Outcome Measure: Predictability of the onset of deficits at specific ages or educational landmarks, measured by strength of the association between results of diagnostic/prognostic tests and actual manifestations of needs and deficits.

5. Does the provision of support to families of children with brain injury enhance the family's ability to cope and reduce the burden of illness?

Rationale: The effect of having a child with brain injury on the composition of the family, and the effect of the family on the recovery process for the child, has been conceptualized as a recursive loop. The event of brain injury may damage or destroy an otherwise functional family. The event of brain injury within a dysfunctional family may have catastrophic results for the child and other family members. Support services that target the family as well as the child and that aid in the coordination of, and transition between, treatment environments are believed to enhance the family's ability to cope with the demands resulting from having a child with brain injury.

Definitions: Support to families may be provided in the form of information, case management, counseling, support groups, respite centers, state or federal agency support, or support from school staff.

Patient Population: The target population for this question includes children whose onset of traumatic brain injury occurred between the ages of 2 and 18 years, as well as the members of their family.

Outcome Measures: Measures of coping, adjustment, satisfaction; measures of stress, and family and caregiver burden.

Appendix C: Search Strategies

MEDLINE Strategy (Identical for all questions) - 1976 to 1997

HealthSTAR strategy (identical for all questions) - 1995 to 1997 (same as MEDLINE search)

PsychINFO search strategy (all questions) - 1982 to 1997

ERIC search strategy (all questions)

CINAHL search strategy (all questions) - 1982 to 1997

Current Content search strategy (all questions) - 1998

Cochrane search strategy (all questions)

Appendix D: Categorization and Code System for Bibliography

Appendix D: Categorization and Code System for Bibliography
Main CategorySub-CategoryCode
1. Design of the studyRandom Controlled Trialrct
Controlledcontrol
Comparison Groupscomp
Interventionint
Prospectivepro
Retrospectiveretro
Population Basedpop
Observationalobserv
Longitudinallong
Followupfu
ABA Designaba
Review/Theoryrev
Case Studycase
Program Descriptionprog
Opinion/Editorial/Letteroped
Case Control Studycscon
Correlational Studycor
Methods Studymeth
Blind Conditionsbl
Double-Blind Conditionsdbl
Surveysurv
Convenience Sampleconv
Consecutive Samplecons
2. Deficit resulting from injuryPhysiological/Medicalphys
Language/Communicationlang
Behaviorbeh
Psychiatricpsyc
Socialsoc
Psychologicalpsy
Educationaledu
Intellectual/Cognitivecog
Reintegration/Independencereint
Motormot
Family Functionfamf
Workwork
Mortalitymort
3. Therapeutic intervention or treatment being studied or appliedAcute Managementacute
Surgicalsurg
Pharmacologicalpharm
Emergency Department/Acute Care Proceduresed
Acute Care Rehabilitationarehab
Outpatient Rehabilitationoprehab
Inpatient Rehabilitationiprehab
Education Programsedu
External Aidext
Behavior Managementbehm
Family/Caregiverfam
Prevention Programprev
4. Outcome of intervention or treatmentPhysiological/Medicalphy
Language/Communicationlang
Behaviorbeh
Psychiatricpsych
Socialsoc
Psychologicalpsy
Educationaledu
Intellectual/Cognitivecog
Reintegrationreint
Activities of Daily Livingadl
Family/Caregiverofam
Workwork
CostCost
Mortalityomort
5. Predictors of outcome under evaluationSeverity of Injurysev
Pre-injury Measurespre
Age at Injury or Assessmentage
Developmental Phase at Injury or Assessmentdev
Cognitive Deficitcogd
Sexsex
Family Functionpfam
Socio-Economic Classsocio
Payer Benefitspay
Cause of Injurycause
Site of Injurysite
Social Supportsocs
Treatmenttreat
Physiological/Medicalmed
Psychiatricpsych
Educationpedu

Bibliographic Entries with Coding1

Adelson,Kochanek, 1998.
des/rev

Alexander, 1993.
des/oped

Alexander, Schor, Smith Jr, 1986.
des/case observ; def/phys

Anderson, Moore, 1995.
des/control long pro; observ fu; def/lang cog;
predict/sev age fam socio cause

Anderson, Morse, Klug, et al, 1997.
des/pro observ; def/cog; predict/sev

Andrews, Rose, Johnson, 1998.
des/control observ; def/beh psyc soc

Aram,1986.
des/control pro observ; def/lang; predict/site

Aram, 1988.
des/rev

Aram, Ekelman, Whitaker, 1987.
des/control pro observ; def/lang; predict/age dev sex
socio site

Arnarson, Halldorsson, 1995.
des/pop observ retro; def/mort

Asarnow, Satz, Light, et al, 1991.
des/retro observ fu; def/beh reint

Ashwal, Eyman, Call, 1994.
des/retro observ fu; def/lang mot mort

Asikainen, Kaste, Sarna, 1996.
des/long observ pop; def/soc; reint work; predict/sev
age pedu

Asikainen, Kaste, Sarna, 1998.
des/long observ pop; def/reint; predict/sev age

Bagnato, Feldman, 1989.
des/review

Bagnato, Mayes, 1986.
des/comp cor pro int conv; def/phys mot lang psyc
soc; interv/iprehab; out/phys mot lang psyc soc adl

Bagnato, Neisworth, 1986.
des/case int; def/cog beh; interv/iprehab; out/phys
beh cog

Bagnato, Neisworth, 1989.
des/case fu; def/cog edu famf; predict/pfam treat
pedu

Bailey, Burchinal, McWilliam, 1993.
des/method

Baltes, 1987.
des/method

Baltes, Reese, Nesselroade, 1977.
des/method

Baracchini-Muratorio, Cantini, Pruneti, 1985.
des/pro observ long; def/phys; cog psy; predict/age

Barry, Clark, 1992.
des/pro int; def/reint; interv/iprehab; out/oreint;
predict/sev pre pfam

Bassett, Slater, 1990.
des/comp pro observ; def/mot lang cog

Basso, Scarpa, 1990.
des/comp pro observ fu; def/lang edu

Bawden, Knights, Winogron, 1985.
des/comp observ pro; def/phys mot cog; predict/sev

Beattie, 1997.
des/rev

Beca, Cox, Taylor, et al, 1995.
des/retro observ; def/phys; predict/sev

Beers, 1992.
des/rev; def/cog ed; predict/dev

Benz, McIntosh, Kallieris, et al, 1993.
des/observ; def/phys; interv/prev

Berger E, Worgotter, Oppolzer, et al, 1997.
des/observ int fu pro; def/reint; interv/iprehab;
out/oreint

Berger K, 1998.
des/method

Bergman, Eklund, Magnusson, 1991.
des/method

Berney, Favier, Froidevaux AC, 1994.
des/retro cons; def/phys mort

Berney, Favier, Rilliet, 1995.
des/retro observ; out/mort

Berney, Froidevaux, Favier, 1994.
des/retro cons observ; def/phys

Biagas, Gaeta, 1998.
des/rev

Bigler, Clark, Farmer, 1997.
des/rev; text book

Bijur, Haslum, Golding, 1990.
des/comp long pro observ pop; def/phys beh psyc soc
cog fam; predict/sev age cog sex socio soc

Bijur, Haslum, Golding, 1996.
des/control retro observ; def/phys cog edu;
predict/sev

Bishop, 1981.
des/rev

Blau, 1936.
des/case retro observ cons; def/phys psyc

Blendonohy, Philip, 1991.
des/case; def/phys

Blosser, DePompei, 1989.
des/prog

Blosser, DePompei, 1992.
des/oped; def/lang cog famf

Blosser, Pearson, 1997.
des/rev; def/edu

Bohn D, 1993.
des/rev

Bowen, Clark, Bigler, 1997.
des/observ retro; def/cog mot; predict/sev cause

Boyer, Edwards P, 1991.
des/pro int cons long; def/mot; lang beh edu cog;
interv/oprehab; out/ophys olang ocog adl oedu;
predict/sev cogd

Brett, Laatsch, 1998.
des/pro int long; def/cog; interv/edu; out/ocog

Brink, Garrett, Hale, et al, 1970.
des/comp retro observ fu; def/mot; lang beh psyc edu
cog reint; predict/sev age

Brodsky, 1988.
des/case

Brookes, MacMillan, Cully, et al, 1990.
des/comp pro retro observ; def/phys; predict/sev age
sex cause

Brooks, Campsie, Symington, et al, 1986.
des/observ pro long; def/phys psy beh famf;
predict/sev

Brown, Chadwick, Shaffer, et al, 1981.
des/control pro observ long fu; def/psyc beh;
predict/pre

Bruce, Schut, Sutton, 1982.
des/rev

Bryk, Raudenbush, 1987.
des/method

Bryk, Raudenbush, 1992.
des/method

Burchinal, Appelbaum, 1991.
des/method

Burke, 1984.
des/case; def/famf

Burke, Wesolowski, Buyer, et al, 1990.
des/retro int fu; def/reint work; interv/oprehab

Burke, Wesolowski, Guth, 1988.
des/retro observ fu; def/cog psy; predict/sev cogd

Burkett, 1989.
des/rev

Butinar, Gostisa, 1996.
des/pro observ; def/mort

Campbell D, Stanley, 1966.
des/method

Campbell TF, Dollaghan, 1990.
des/comp pro long int; def/lang; interv/oprehab;
out/lang; predict/sev

Capruso, Levin, 1992.
des/rev; def/cog

Carney, Gerring, 1990.
des/rev

Cattelani, Lombardi, Brianti, et al, 1998.
des/retro observ long; def/cog soc beh psyc;
predict/sev

Chadwick, Rutter, Brown, et al, 1981.
des/control pro observ long fu; def/cog; predict/sev
age cog sex

Chadwick, Rutter, Shaffer, et al, 1981.
des/control pro observ long fu; def/cog; predict/cogd

Chadwick, Rutter, Thompson, et al, 1981.
des/pro observ pop; def/lang edu cog; predict/sev age
site

Chapman, Culhane, Levin, et al, 1992.
des/pro observ fu; def/lang cog; predict/cogd

Chapman, Levin, Wanek, et al, 1998.
des/pro observ fu; def/lang; predict/age site

Chesnut, Carney, Maynard, et al, 1999.
des/rev

Cioni, Prechtl, Ferrari, et al, 1997.
des/method

Clark, 1996.
des/case rev; def/edu soc

Cockrell, Gregory, 1992.
des/retro observ; def/phys

Connell, Skinner, 1990.
des/method

Connor, Steingard, 1996.
des/rev

Conoley, Sheridan, 1996.
des/rev; def/psy soc famf

Costeff, Abraham, Brenner, et al, 1988.
des/retro comp observ fu; def/phys cog mot;
predict/cog

Costeff, Groswasser, Landman, et al, 1985.
des/pro observ fu; def/mot lang psyc

Coster, Haley, Baryza, 1994.
des/comp long pro observ pop; def/beh soc reint fam;
predict/sev

Crowley, Miles, 1991.
des/case int pro; def/cog; interv/cog; out/ocog

D'Amato, Rothlisberg, 1996.
des/rev

Dalby, Obrzut, 1991.
des/rev

Dall' Oglio, Bates, Volterra, et al, 1994.
des/long case pro observ fu; def/lang; predict/age

Dam Hieu, Sizun, Person, et al, 1996.
des/retro observ case; interv/surg; out/ophys

Davidson, 1990.
def/work

Day, Ulatowska, 1979.
des/case pro observ; def/mot lang cog

Deaton, Poole, Long, 1987.
des/rev; def/work

Dennis, 1985.
des/cor retro observ pop; def/cog; predict/med

Dennis, 1992.
des/rev; def/lang

Dennis, Barnes, 1990.
des/comp cor observ conv; def/lang

Dennis, Barnes, Donnelly, et al, 1996.
des/comp cor pro pop; def/lang cog; predict/sev age
site

Dennis, Barnes, Wilkinson, 1998.
des/comp cor pro observ pop; def/lang; predict/age
site

Dennis, Lovett, Wiegel-Crump, 1981.
des/case

Dennis, Whitaker, 1976.
des/case

DePompei, Blosser, 1997.
des/oped; def/edu

DePompei, Williams, 1994.
des/rev; def/famf

DiScala, Grant, Brooke, et al, 1992.
des/comp retro observ fu; def/phys

DiScala, Osberg, Savage, 1997.
des/retro pop surv; def/phys reint

Doelling, Bryde, Parette, 1997.
des/method

Donders, J Abnorm Child Psychol, 1992.
des/comp surv; def/beh psy soc; predict/pre

Donders, J Clin Psychol 48(2), 1992.
des/cor observ; def/cog

Donders, J Clin Psychol 48(3), 1992.
des/observ cor; def/cog

Donders, 1993.
des/comp observ; def/cog

Donders, 1994.
des/retro observ cons fu; def/phys cog; predict/sev
pre age cogd

Donders, Ballard E, 1996.
des/cor retro surv fu; def/psys psy soc beh;
predict/sev psy soc pre

Donders, Strom, 1997.
des/control retro observ; def/ed cog; predict/pre cogd

dos Santos, Plese, Ciquini Jr, 1994.
des/cor observ; def/phys

Duhaime, Eppley, Margulies, et al, 1995.
des/case retro observ; def/phys

Edwards, 1987.
des/retro observ fu; def/phys reint

Eiben, Anderson, Lockman, et al, 1984.
des/retro surv; def/lang soc cog; predict/sev age

Eisele, Aram, 1994.
des/control pro observ conv; def/lang; predict/site

Eisele, Lust, Aram, 1998.
des/control pro observ conv; def/lang; predict/site

Emanuelson, Von Wendt, 1998.
des/cor retro observ pop fu; def/phys

Emanuelson, Von Wendt, 1998.
des/cor retro observ pop fu; def/phys

Emanuelson, Von Wendt, Beckung, et al, 1998.
des/case observ fu; def/cog mot soc reint

Emanuelson, Von Wendt, Bjure, et al, 1997.
des/comp pro observ; def/phys

Emanuelson, Von Wendt, Lundalv, et al, 1996.
des/retro observ long fu; def/lang beh cog soc

Engberg, Teasdale, 1998.
des/retro observ pop fu; def/phys

Eriksson, Perfilieva, Bjork-Eriksson, et al, 1998.
des/anatomy

Ersahin, Mutluer, Mirzai, et al, 1996.
des/retro observ pop; def/phys

Ewing-Cobbs, 1986.
des/rev

Ewing-Cobbs, Brookshire, Scott, et al, 1998.
des/comp observ fu; def/cog lang

Ewing-Cobbs, Fletcher, Levin, 1989.
des/comp pro observ fu; def/cog mot
lang; predict/sev age

Ewing-Cobbs, Fletcher, Levin, et al, 1997.
des/pro observ long; def/lang cog mot

Ewing-Cobbs, Kramer, Prasad, et al, 1998.
des/comp pro long observ; def/phys cog mot

Ewing-Cobbs, Levin, Eisenberg, et al, 1987.
des/comp pro observ conv; def/lang; predict/sev age

Ewing-Cobbs, Levin, Fletcher, et al, 1990.
des/pro observ fu; def/cog

Ewing-Cobbs, Thompson, Miner, et al, 1994.
des/long pro observ cons; def/mot lang beh edu cog
reint; predict/age dev

Farley, 1990.
des/rev; def/phys

Farmer JE, Clippard, Luehr-Wiemann, et al, 1996.
des/rev

Farmer JE, Peterson, 1995.
des/rev

Farmer M, Singer, Mellits, et al, 1987.
des/comp pro surv cons; def/phys mot lang beh psyc soc;
predict/age site

Fay, Jaffe, Polissar, et al, 1993.
des/control cor pro cons observ fu; def/phys soc psy
edu reint; predict/sev

Fay, Jaffe, Polissar, et al, 1994.
des/control pro observ pop fu; def/phys soc psy edu
reint; predict/sev

Feldman HM, Holland, Brown, 1992.
des/case pro observ fu; def/lang; predict/site

Feldman HM, Holland, Kemp, et al, 1992.
des/control long pro observ conv; def/lang;
predict/age site

Feldman HM, Janosky, Scher, et al, 1994.
des/comp cor pro observ fu; def/lang

Feldman KW, Brewer, Shaw, 1995.
des/retro observ; def/phys

Fields, Coble, Pollack, et al, 1993.
des/case pro observ surv fu; def/phys

Filley, Cranberg, Alexander, et al, 1987.
des/comp pro observ cons; def/beh soc edu reint
work;predict/sev site

Fisher, 1997.
des/rev

Fletcher, 1990.
des/comp long pro observ cons fu; def/phys beh soc;
predict/sev age sex socio cause site

Fletcher, Levin, 1988.
des/method

Fletcher, Levin, Lachar, et al, 1996.
des/comp observ; def/cog psy psyc; predict/sev

Fletcher-Janzen, Kade, 1997.
des/method

Fowler, Kriel, Krach, 1992.
des/retro observ cons; def/phys

Frances, Jensen, 1985.
def/phys psy

Francis, Fletcher, Stuebing, et al, 1991.
des/method

Franzen, Roberts, Schmits, et al, 1996.
des/aba case; def/cog

Freeman, Burrell, Sedger, 1990.
des/int case observ fu; def/reint; interv/oprehab;
out/oreint ofam cost

Frewen, Sumabat, Del Maestro, 1985.
des/comp observ fu; def/phys

Fuld, Fisher, 1977.
des/case pro observ conv fu; def/sev mot lang soc edu
cog

Gaidolfi, Vignolo, 1980.
des/observ long fu; def/psy cog soc; predict/sev age

Gambardella, Zaccone, Cardia, et al, 1993.
des/pro int; def/phys; interv/surg; out/ophys

Genuardi, King, 1995.
des/retro pop observ; def/phys

Gerberich, Finke, Madden, et al, 1987.
des/observ surv; def/phys; sports hockey

Gill, Cohen, Korn, et al, 1996.
des/observ fu; def/beh cog lang mot work

Glang, Todis Cooley, et al, 1997.
des/case pro int fu; def/edu soc reint; interv/educ

Glass, Bulas, Wagner, et al, 1998.
des/comp pro; def/phys cog mot

Godbout, 1997.
des/aba case int; def/phys mot; interv/iprehab

Gold, 1985.
des/case; def/cog edu

Goldberg, Sachs, 1992.
des/rev

Goldstein B, DeKing, DeLong, et al, 1993.
des/pro observ; def/phys mort

Goldstein F, 1985.
des/rev

Goshen, Zwas, Shahar, et al, 1996.
des/int pro; def/phys; interv/acute

Gotschall, Papero, Snyder, et al, 1995.
des/cor pro observ cons long; def/phys beh soc cog
mot

Greenspan, 1996.
des/rev

Greenspan, MacKenzie, 1994.
des/comp pro surv sons fu; def/phys beh edu;
predict/sev pre socs pfam

Greenwald, Ghajar, 1995.
des/rev int; def/phys; interv/acute

Groswasser, Costeff, Tamir, 1985.
des/retro surv; def/phys cog

Guerriere, McKeever, 1997.
des/case; def/famf

Gulbrandsen, 1984.
des/control observ fu; def/cog; predict/age

Gutentag, Naglieri, Yeates, 1998.
des/control observ; def/cog

Haley, Cioffi, Lewin, et al, 1990.
des/rev; def/mot

Hall DM, Johnson, Middleton, 1990.
des/rev

Hall JR, Reyes, Meller, et al, 1996.
des/comp retro observ cons; def/phys; interv/acute;
out/ophys omort; predict/sev treat

Hallett, 1997.
des/comp observ; def/cog lang; predict/age dev

Hanigan, Wright, Wright, 1986.
des/retro observ; def/phys

Harris, 1996.
des/comp pro observ conv; def/cog; predict/sev

Hart BL, Dudley, Zumwalt, 1996.
des/case retro observ; def/phys

Hart K, Faust, 1988.
des/surv; des/phys; predict/age dev

Hayward, 1987.
des/prog

Hegel, 1988.
des/case int; def/beh; interv/behm

Heindl, Laub, 1996.
des/comp retro observ fu; def/phys; predict/sev

Helfaer, Wilson, 1993.
des/rev

Helgadottir, 1996.
des/case; def/lang reint psy soc

Hemphill, Feldman, Camp, et al, 1994.
des/comp pro observ; def/lang

Hendrickson, Becker, 1996.
des/rev int; def/phys; interv/prev

Henry, 1983.
des/prog rev; def/cog

Hicks, Gaughan, 1995.
des/retro observ; def/mort

Hinnant, 1994.
des/case; def/phys

Hirsch, DuBois, 1991.
des/method

Hofer, 1993.
des/retro observ; def/phys mort

Horton Jr, 1996.
des/rev int; interv/edu

Hu, Wesson, Kenney, et al, 1993.
des/long pro observ cons; def/phys beh psyc reint
fam; predict/fam psyc age sev

Hudspeth, Pribram, 1990.
des/control retro observ pop; def/phys; predict/age
dev

Humphreys, Hendrick, Hoffman, 1990.
des/case; def/lang mort

Hurvitz, Mandac, Davidoff, et al, 1992.
des/retro observ; def/phys

Jaffe, Fay, Polissar, et al, 1992.
des/cscon long pro cons; def/phys beh edu cog;
predict/sev age cogd sex

Jaffe, Fay, Polissar, et al, 1993.
des/cscon cor long pro observ pop; def/phys cog mot
edu; predict/sev

Jaffe, Hays, 1986.
des/rev

Jaffe, Massagli, Martin, et al, 1993.
des/cor long pro observ; out/cost; predict/sev cause
site

Jaffe, McDonald, 1992.
des/long pop

Jaffe, Okamoto, Lemire, 1986.
des/rev

Jaffe, Polissar, Fay, et al, 1995.
des/cscon long pro observ; def/phys cog mot;
predict/sev pre

James, Madauss, Tibbs, et al, 1979.
des/int; def/phys; interv/pharm; out/ophys ocog oreint
omort

Johnson BP, 1995.
des/case; def/famf

Johnson DA, 1992.
des/rev; def/sev cog

Johnson DL, Krishnamurthy, 1996.
des/retro pop; def/phys mort; interv/acute surg;
out/omort; predict/sev treat

Johnston, Gerring, 1992.
des/rev

Johnstone, Zuberi, Scobie, 1996.
des/retro observ pop; def/phys; predict/sev age sex
cause

Jordan, Cannon, Murdoch, 1992.
des/control pro observ fu; def/lang

Jordan, Cremona-Meteyard, King, 1996.
des/control pro observ conv; def/lang cog

Jordan, Murdoch, 1990.
des/cont pro observ conv; def/mot lang; predict/sev

Jordan, Murdoch, 1994.
des/control pro observ conv; def/lang

Jordan, Murdoch, Buttsworth, 1991.
des/control pro observ conv; def/lang; predict/sev

Jordan, Ozanne, Murdoch, 1990.
des/control observ; def/lang

Kaiser, Pfenninger, 1984.
des/ pro int long fu; def/phys psy cog ed; int/acute surg
pharm; out/ophys omort opsy ocog oreint

Kaufmann, Fletcher, Levin, et al, 1993.
des/comp pro observ cons; def/cog; predict/sev age

Kehle, Clark, Jenson, 1996.
des/rev prog; def/beh

Kennedy, Freeman, 1986.
des/rev

Kersenbrock, Kirchner, Sammons, 1983.
des/case

Kinsella, Prior, Sawyer, et al, 1995.
des/long observ; def/cog edu; predict/sev cog

Kinsella, Prior, Sawyer, et al, 1997.
des/long observ; def/sev cog; predict/sev cog

Kissoon, Dreyer, Walia, 1990.
des/rev; def/phys

Kleinpeter, 1976.
def/soc reint

Klonoff, Paris, 1974.
des/comp long pro observ cons; def/phys mot lang
beh psyc soc psy edu cog reint fam; predict/sev pre
age dev sex cogd

Klonoff, Low, Clark, 1977.
des/control pro observ cons fu; def/phys mot cog;
predict/age

Knights, Ivan, Ventureyra, et al, 1991.
des/comp long pro observ cons; def/phys mot lang
cog psyc soc edu; predict/sev

Koelfen, Freund, Dinter, et al, 1997.
des/comp observ fu; def/phys cog; predict/sev

Kolb, 1989.
des/rev

Krach, Kriel, Morris, et al, 1997.
des/observ retro cons fu; def/phys cog mot mort;
predict/sev

Krashen, 1973.
des/rev

Kraus, Fife, Conroy, 1987.
des/retro observ pop; def/phys mort

Kraus, Fife, Cox, et al, 1986.
des/retro observ surv; def/phys age

Kraus, Rock, Hemyari, 1990.
des/rev; interv/prev

Krell, 1997.
des/case

Kriel, Krach, Panser, 1989.
des/comp retro; def/phys mot cog; predict/age treat

Kumar, West, Quirke, et al, 1991.
des/comp bl retro observ cons; def/phys lang cog
mort; interv/acute; out/phys cog; predict/sev age treat

Kuyper, van Tol-de Jager, Post, et al, 1996.
des/cor retro surv fu; def/phys cog

Lange-Cosack, Riebel, Grumme, et al, 1981.
des/comp pro observ fu; def/phys psy cog soc ed
reint; predict/sev

Lawson, Rice, 1989.
des/case; def/cog lang

Leathem, Body, 1997.
des/control pro observ; def/beh cog

Lehr, Psychological management, 1990.
des/rev; def/cog edu psyc beh soc famf; text book

Lehr, A developmental perspective, 1990.
des/method

Leichtman, 1992.
des/case; def/psyc

Levin, 1992.
des/rev; def/psy soc famf; interv/pharm

Levin, 1993.
des/rev; def/psyc cog; predict/age site

Levin, Culhane, Fletcher, et al, 1994.
des/control observ fu; def/phys cog; predict/age site

Levin, Culhane, Mendelsohn, et al, 1993.
des/control cor observ fu; def/phys cog; predict/sev site

Levin, Eisenberg, 1979.
des/observ; def/psy cog; predict/sev

Levin, Eisenberg, Wigg, et al, 1982.
des/control pro observ conv fu; def/cog; predict/sev age

Levin, High, Ewing-Cobbs, et al, 1988.
des/control pro observ fu; def/cog; predict/sev age

Levy ML, Masri, Levy, et al, 1993.
des/comp observ; def/phys; predict/age sex site socio

Levy Y, Amir, Shaley, 1992.
des/long case; def/lang

Lewis, Shanok, Pincus, et al, 1982.
des/observ; def/psyc beh

Lieh-Lai, Theodorou, Sarnaik, et al, 1992.
des/comp retro observ; def/phys mort; predict/sev

Lloyd, Martin, Taylor, et al, 1985.
des/cor int pro; def/phys; interv/acute pharm;
out/phys

Lord-Maes, Obrzut, 1996.
des/rev

Loroni, Ciucci, Piccinini, et al, 1996.
des/retro observ pro int phys; def/phys; predict/sev
age

Luerssen, 1997.
des/rev; def/phys

Luerssen, Klauber, Marshall, 1988.
des/long pro observ pop fu; def/mort; predict/age

Luiselli, Gardner, Arons, et al, 1998.
des/prog; def/phys psyc soc ed cog

Lumenta, Kramer, Sprick, et al, 1985.
des/pro int fu; def/phys; interv/acute surg; predict/age
site

Macnab, 1991.
des/retro observ; def/phys; interv/prev; predict/treat

Manchester, Hodgkinson, Pfaff, et al, 1997.
des/case int; def/soc beh; interv/behm

Mansfield, 1997.
des/rev; def/phys

Marchman, Miller, Bates, 1991.
des/comp long pro observ; def/lang; predict/site

Massagli, Jaffe, Gay, et al, 1996.
des/cscon cor pro fu; def/phys cog beh; predict/sev

Massagli, Michaud, Rivara, 1996.
des/retro observ cons fu; def/phys reint cog edu
work; predict/sev

Mateer, Kerns, Eso, 1996.
des/rev int; def/cog reint

Matthews, 1997.
des/oped

Max, Bowers, Baldus, et al, 1998.
des/comp cor observ blind; def/phys psyc; predict/sev

Max, Castillo, Bokura, et al, 1998.
des/observ long pro observ cons; def/psyc;
predict/sev psy socio

Max, Castillo, Robin, et al, 1998.
des/cor long pro observ; def/psyc famf; predict/pre
pfam

Max, Lindgren, Knutson, et al, 1997.
des/cor retro observ cons; def/psyc; predict/sev pre
cogd pfam socio

Max, Lindgren, Knutson, et al, . . . disruptive behavior, 1998.
des/cor retro observ cons; def/beh psyc famf;
predict/sev pre pfam

Max, Lindgren, Knutson, et al, . . . injury severity, 1998.
des/cor retro observ cons; def/lang beh psyc ed;
predict/sev

Max, Lindgren, Robin, et al, 1997.
des/pro observ fu; def/psyc beh famf; predict/sev pre
pfam

Max, Robin, Lindgren, et al, 1998.
des/cor pro observ; def/phys psyc beh cog;
predict/pre pfam socio cogd

Max, Sharma, Qurashi, 1997.
des/cscon retro observ cons; def/psyc

Mayer, Walker, 1982.
des/pro observ; def/phys mort; predict/sev

Mazza, Pasqualin, Feriotti, et al, 1982.
des/pro observ; def/phys; predict/sev site

McArdle, Epstein, 1987.
des/method

McClelland, Rekate, Kaufman, et al, 1980.
des/retro; def/phys

McCrea, Kelly, Kluge, et al, 1997.
des/retro int; def/phys; interv/acute; out/phys

McDonald, Jaffe, 1992.
def/phys beh famf

McDonald, Jaffe, Fay, et al, 1994.
des/cscon cons pro observ fu; def/phys cog edu;
predict/sev pre age sex

McLean, Kaitz, Keenan, et al, 1995.
des/rev; def/phys

Melamed, Wozniak, 1998.

Merten, Osborne, 1983.
des/rev; def/phys

Michaud, 1994.

Michaud, 1995.
out/cost

Michaud, Duhaime, 1995.
des/rev; def/phys

Michaud, Rivara, Grady, et al, 1992.
des/long retro observ cons; def/phys mot mort;
predict/sev treat

Michaud, Rivara, Jaffe, et al, 1993.
des/cscon retro surv; def/beh cog edu; predict/age

Milton, Scaglione, Flanagan, et al, 1991.
des/rev case; def/cog edu

Minde, 1984.
des/rev

Miner, Cabrera, Ford, et al, 1986.
des/case; def/phys

Mitchell, Cusick, 1998.
des/prog int; def/reint cog

Mittenberg, Wittner, Miller, 1997.
des/rev; def/phys

Molnar, Easton, Badell, et al, 1987.
des/rev

Montgomery, 1984.
des/case

Moviat, Janssen, Jaeken, et al, 1995.
des/retro case observ; def/cog beh

Muller, Rothermel, Behen, et al, 1998.
des/comp observ; def/phys cog lang; predict/site

Mwaria, 1990.
des/case; def/psyc famf

Nass, Koch, 1987.
des/comp pro observ conv; def/psy; predict/site

Newcombe, 1982.
des/rev

Newman, Lovett, Dennis, 1986.
des/case; def/lang

Noah, Hahn, Rubenstein, et al, 1992.
des/rev; def/phys

O' Sullivan, 1996.
des/case

Oberg, Turkstra, 1998.
des/case int fu; def/lang; interv/oprehab edu;
out/ocog

Ong, Selladurai, Dhillon, et al, 1996.
des/cor retro observ; def/phys mort; predict/sev

Osberg, Brooke, Baryza, et al, 1997.
des/cor pro observ surv fu; def/phys famf; predict/sev
pfam socio pay

Osberg, DiScala, Gans, 1990.
des/retro observ pop; def/phys mot soc reint;
predict/sev treat

Ottewell, 1992.
des/case

Otto, 1960.
des/case retro observ; def/phys cog psyc

Paret, Barzilay, 1995.
des/cor pro observ; def/phys mort; predict/med

Paret, Dekel, Yellin, et al, 1996.
des/cor retro observ; def/phys; predict/sev med

Parker, 1994.
des/rev; def/phys cog mot lang psyc; predict/sev age
socs psych

Parkin, Maas, Rodger, 1996.
des/cor retro surv fu; def/phys cog beh psyc;
predict/pre pfam socs med

Parmelee, 1989.
des/rev; def/psyc

Parmelee, Kowatch, Sellman, et al, 1989.
des/case

Parmelee, O' Shanick, 1987.
des/case; def/psyc

Patterson, 1998.
des/oped

Perrott, 1991.
des/cscon pro observ conv; def/phys mot beh psyc
soc cog reint fam; predict/sev

Pettersen, 1991.
des/control pro observ conv; def/psy cog

Pfenninger, Kaiser, Lutschg, et al, 1983.
des/pro int; def/phys; interv/acute surg; out/phy

Polissar, Fay, Jaffe, et al, 1994.
des/cscon cor retro cor fu; def/phys reint; predict/sev

Pollack, Patel, Ruttimann, 1997.
des/cor pro observ cons; def/phys mort

Prior, Kinsella, Sawyer, et al, 1994.
des/comp pro observ cons fu; def/beh soc cog; predict/sev

Quine, Pierce, Lyle, 1988.
des/pro int fu; def/famf; int/fam; out/ofam

Ramundo, McKnight, Kempf, et al, 1995.
des/pro int; def/phys; interv/acute; out/ophys;
predict/med

Reilly, Bates, Marchman, 1998.
des/cscon int; def/lang; interv/ed; out/olang;
predict/age site

Ried, Strong, Wright, et al, 1995.
des/oped; def/soc; predict/socs

Riva, Cazzaniga, 1986.
des/control pro observ conv; def/cog; predict/age site

Rivara F, Mueller, 1986.
des/rev

Rivara JB, 1994.
des/cons pro fu; def/famf phys; predict/sev pre pfam

Rivara JB, Fay, Jaffe, et al, 1992.
des/comp observ survcons pro fu; def/famf phys;
predict/sev pre pfam

Rivara JB, Jaffe, Fay, et al, 1993.
des/cor cons pro fu; def/famf phys reint; predict/sev
age pre pfam

Rivara JB, Jaffe, Polissar, et al, 1994.
des/cor cons pro fu; def/famf phys edu beh;
predict/sev pre pfam

Rivara JB, Jaffe, Polissar, et al, 1996.
des/long pro cons fu; def/phys famf reint beh soc;
predict/pre pfam sev

Roddy, Cohn, Moller, et al, 1998.
des/retro observ; def/phys; predict/med

Rogers, Kreutzer, 1984.
def/famf

Rose, Johnson, Attree, 1997.
des/oped

Ross, Ernst, Kreis, et al, 1998.
des/observ; def/phys

Rossi, Sullivan, 1996.
des/pro observ fu; def/mot

Rudel, Teuber, 1971.
des/control pro observ conv; def/mot lang cog

Rudel, Teuber, Twitchell, 1974.
des/control pro observ conv; def/phys mot cog;
predict/age

Ruijs, Keyser, Gabreels, 1990.
des/pro observ long; def/phys mot cog beh psy soc

Ruijs, Keyser, Gabriel, 1994.
des/rev

Russo, Bressolle, Duboin, 1997.
des/case int; def/phys; interv/pharm; out/ophys

Rutter, 1981.
des/rev; def/cog psyc; predict/sev med pre socs

Rutter, 1982.
des/rev; def/cog beh psy

Rutter, Chadwick, Shaffer, et al, 1980.
des/cscon pro long; def/phys lang beh psyc soc psy
ed cog; predict/sev

Sakzewski, Ziviani, 1996.
des/rev; def/phys; predict/sev med treat

Sakzewski, Ziviani, Swanson, 1996.
des/comp pro int; def/phys; predict/age sex cause
treat; out/cost phys

Sandermann, Haase, Bartholdy, et al, 1986.
des/case pro int fu; def/phys; int/acute surg; out/phys

Savage, 1991.
des/rev

Savage, 1997.
des/oped; predict/treat

Schmitt, Bauersfeld, Fanconi, et al, 1997.
des/pro observ; def/phys

Schmitz, Skinner, 1993.
des/method

Segalowitz, Brown, 1991.
des/surv pop; def/mot beh edu; predict/age

Segalowitz and Lawson, 1995.
des/cor retro surv; def/phys cog beh psyc

Sellars, Vegter, and Flaig, 1997.
des/case rev

Selz, 1979.
des/com pro observ conv; def/mot cog

Shaffer, Bijur, Chadwick, et al, 1980.
des/pro observ pop fu; def/lang; predict/site

Sharma and Sharma, 1994.
des/retro pop observ; def/phys mort reint

Shurtleff, Massagli, Hays, et al, 1995.
des/case; def/cog

Sigelman and Shaffer, 1995.
des/method

Silver, Boake, and Cavazos, 1994.
des/case int fu; def/cog beh reint; interv/behm;
out/beh adl

Skinner, Zimmer-Gembeck, and Connell, 1998.
des/method

Skippen, Seear, Poskitt, et al, 1997.
des/pro int; def/phys; interv/phys; out/ophys

Slater and Bassett, 1988.
des/control retro observ fu; def/cog lang

Slifer, Cataldo, Babbitt, et al, 1993.
des/case int; def/beh; interv/behm; out/obeh

Slifer, Cataldo, Kurtz, 1995.
des/case int; def/beh; interv/behm; out/beh

Slifer, Tucker, Gerson, et al, 1996.
des/case int; def/beh; interv/behm; out/obeh

Slifer, Tucker, Gerson, et al, 1997.
des/case pro int fu; def/beh; interv/behm; out/obeh

Sobus, Alexander, Harcke, 1993.
des/pro observ cons; def/phys

Sokol, Ferguson, Pitcher, et al, 1996.
des/comp observ fu; def/beh famf; predict/age pfam
socio psych

Sollee, Kindlon, 1987.
des/comp pro; def/cog beh; predict/site

Song, Kim, Kim, et al, 1997.
des/rev; def/phys mort

Splaingard, Gaebler, Havens, et al, 1989.
des/comp retro observ fu; def/phys mort reint;
predict/med

St. James-Roberts, 1979.
des/rev

Sternlicht, 1989.
des/method

Stiles, Nass, 1991.
des/cscon observ; def/cog; predict/site

Stiles, Stern, Trauner, et al, 1996.
des/control observ; def/phys cog; predict/site

Stiles-Davis, Sugarman, Nass, 1985.
des/comp pro observ conv; def/cog; predict/site

Stiles-Davis, Janowsky, Engel, et al, 1988.
des/control pro observ conv; def/mot cog; predict/site

Sutton, Wang, Duhaime, et al, 1995.
des/pro observ; def/phys; interv/acute; out/ophys

Suzman, Morris, Morris, et al, 1997.
des/case pro int fu; def/phys cog; interv/edu; out/ocog
oedu

Szatmari, 1985.
des/rev

Taylor, Alden, 1997.
des/rev; def/phys beh cog; predict/pre site socs

Telzrow, 1987.
des/rev; def/ed

Tepas, DiScala, Ramenofsky, et al, 1990.
des/retro observ pop; def/mort; predict/cause

Thakker, Splaingard, Zhu, et al, 1997.
des/retro observ pop fu; def/phys reint mort;
predict/sev age

Thal, Marchman, Stiles, et al, 1991.
des/long pro observ pop fu; def/lang; predict/age dev
site

Thatcher, 1991.
des/control retro observ pop; def/phys; predict/age
site

Thompson, Francis, Stuebing, et al, 1994.
des/long pro observ conv; def/mot cog; predict/sev
age dev

Tomberg, Rink, Pikkoja, et al, 1996.
des/retro observ cons; def/phys reint; predict/med

Tompkins, Holland, Ratcliff, et al, 1990.
des/cor long observ; def/beh cog lang phys;
predict/sev pre age pfam

Trauner, Ballantyne, Friedland, et al, 1996.
des/control pro observ conv; def/lang; predict/site

Tucker, Colson, 1992.
des/rev

Turkstra, Holland, 1998.
des/cscon observ; def/lang cog

Turkstra, McDonald, Kaufmann, 1996.
des/comp case observ; def/lang cog

Vander, Sherman, Luciano, 1970.
des/method

Vander Schaaf, Kriel, Krach, et al, 1997.
des/comp cor observ cons fu; def/phys mot;
predict/sev cause

Vartiainen, Karjalainen, Karja, 1985.
des/case observ fu; def/phys

Vigil-Sewell, Sargent, 1996.
des/oped

Virginia, 1991.
des/retro surv pop; def/phys mot lang psyc edu

Waaland, Kreutzer, 1988.
des/rev

Waaland, 1991.
des/rev; famf

Waaland, Burns, Cockrell, 1993.
des/surv; def/famf reint

Wade, Drotar, Taylor, et al, 1995.
des/rev; def/famf; predict/pre pfam

Wade, Taylor, Drotar, et al, 1996.
des/control cor pro observ fu; def/phys psy famf;
predict/socs psych

Wade, Taylor, Drotar, et al, 1998.
des/control long observ; def/phys famf psyc;
predict/sev

Ward, 1995.
des/oped

Warschausky, Cohen, Parker, et al, 1997.
des/cscon observ; def/cog soc; predict/sev sex

Warzak, Allan, Ford, et al, 1995.
des/comp surv cor; def/reint

Webb, Rose, Johnson, et al, 1996.
des/comp observ sur; def/reint; predict/age

Willett, Ayoub, Robinson, 1991.
des/method

Willett, Sayer, 1994.
des/method

Williams D, Mateer, 1992.
des/case observ fu; def/cog beh soc; predict/site age

Williams SE, Ris, Ayyangar, et al, 1998.
des/control pro dbl int; def/beh cog; int/acute pharm;
out/obeh ocog

Wilson, Powell, Brock, et al, 1996.
des/case int rev; def/phys; interv/acute; out/phys;
predict/age sex

Winogron, Kinghts, Bawden, 1984.
des/comp pro observ conv; def/mot cog; predict/sev

Wit, Maassen, Gabreels, et al, 1994.
des/cscon control comp observ; def/lang;
predict/cause

Wolcott, Lash, Pearson, 1995.
des/prog rev; def/edu

Woods, 1980.
des/comp pro observ cons; def/cog; predict/site

Woods, Carey, 1979.
des/control pro observ conv; def/lang; predict/age

Worley, Hoffman, Paine, et al, 1995.
des/case cor pro int fu; def/phys; interv/phys;
out/ophys; predict/treat

Worthington, 1989.
des/rev; def/psy famf soc reint

Yeates, Blumenstein, Patterson, et al, 1995.
des/control pro observ consec; def/cog; predict/sev
age

Yeates, Taylor, Drotar, et al, 1997.
des/comp pro observ fu; def/cog beh famf soc;
predict/sev pre pfam socs

Ylvisaker, 1986.
des/rev

Ylvisaker, 1993.
des/rev

Ylvisaker, Feeney, 1995.
des/rev

Ylvisaker, Szekeres, Hartwick, et al, 1994.
des/rev

Ylvisaker, Weinstein, 1989.
des/rev; def/phys psy cog beh soc famf

Yorkston, Jaffe, Polissar, et al, 1997.
des/cscon cor pop observ; def/cog lang; predict/sev
cog

Zencius, Wesolowski, Burke, 1989.
des/case pro int fu; def/beh psy; int/behm; out/reint

Zimmer-Gembeck, 1998.
des/method

Zuckerman, Conway Jr, 1997.
des/rev

Appendix E: Evidence Table Template

Appendix E: Evidence Table Template
SourceStudy DesignSetting/ PopulationSampleInterventionCo-InterventionsConfounding Variables
RCT Controlled Comparison Group Prospective Retrospective Population-Based Observational Longitudinal Followup ABA Review Case Study Program Descript. Allocation Method BlindingGroups/n Baseline differences Developmen. Categ. Chronicity Age at Injury Age at Evaluation Mechanism of Inj. Severity Focal Inj. Location Family Status Inclusions/Exclus.Target Deficit Procedure Duration Setting
Pre-Morbid Baseline OutcomeMethod Control for Spontaneous Recovery Control for Confounders

Appendix F: Key to Rating Categories in Columns of Table 3 (Question 4)

Appendix F
ColumnMeaning of entries
(1)Name of senior author of rated article
(2)Date of publication
(3)List of studied categories of development [see matrix of Table 1]
(4)Study Length
5=Longitudinal study lasting > 3 years
4=Longitudinal study lasting 3 years
3=Longitudinal study lasting 2 years
2=Longitudinal study lasting 1 year
1=Longitudinal study lasting <1 year
0=cross-sectional study
(5)Design
2=prospective study
1=retrospective study
(6)Setting
3=population-based sample
2=multi-center sample
1=local, 1-center sample
0=nature of sample not reported
(7)Selection
4=entire population of cases studied
3=random or other representative sample
2=consecutive sample
1=convenience sample
0=nature of sample not reported
(8)Range of ages in sample at time of measurement
(9)Span of development stages covered by (8) [see Table 1]
4=within one sub-stage (e.g., ages 0-6 mo. in Infancy stage)
3=within 1 stage (e.g., ages 7-24 mo.: all still in Infancy stage)
2=spanning 2 stages (e.g., ages 19 m-4 y, Infancy - Childhood)
1=spanning 3 stages
0=spanning 4 stages
(10)Comparison Method
4=experimental group compared with >1 control, including uninjured
3=compared with uninjured/normative control
2=compared with >1 TBI group (e.g., RH vs LH focal lesion)
1=compared within TBI group (e.g., gender, age at testing)
0=no comparison group
(11)Specification of Severity of Injury
4=severity determined by brain scan
3=severity determined by length of coma
2=severity determined by scale (e.g., GCS)
1=severity determined by clinical estimation
0=severity not reported
(12)Location of Injury
2=location of injury reported
1=location of injury not reported
(13)Span of development stages covered by range of age at injury in sample
Same entries and criteria as 9
(14)Time from Injury to Assessment
2=30 days interval between injury and 1st measurement in study
1= >30 days interval between injury and 1st measurement in study
0=injury-measurement interval not reported
(15)Number of years follow-up measures taken after injury
(16)Analysis
5=innovative design, procedures, or analysis
4=covariance or multiple regression designs
3=MANOVA or correlation
2=univariate comparisons or 1-way ANOVA
1=descriptive statistics
0=case histories only
(17)Sum of columns 4-7 and 9-14 and 16 (columns 1, 2, 3, 8, and 15 not part of sum)

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This bibliography does not contain the codes for the different categories of studies. A bibliography with codes in electronic form in a reference manager program is available upon request to the developers of the report.

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Footnotes
1

SAS Institute, Inc., Cary, NC.

1

This listing includes nearly all citations in the bibliography. Please refer to the bibliography for complete citations and to the categorization and coding system at the beginning of this appendix for a key to these codes.

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