Evidence Report/Technology Assessment Number 2, Supplement
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Under its Evidence-based Practice Program, the Agency for Health Care Policy and Research (AHCPR) is developing scientific information for other agencies and organizations on which to base clinical guidelines, performance measures, and other quality improvement tools. Contractor institutions review all relevant scientific literature on assigned clinical care topics and produce evidence reports and technology assessments, conduct research on methodologies and the effectiveness of their implementation, and participate in technical assistance activities.
Introduction / Background / Conceptual Model /
Key Questions / Methods / Findings / Conclusions and Future Research / Availability of Full Report
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, there are impairments in self-feeding, cognition, and behavior (75 percent); 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 move on to inpatient rehabilitation and some to long-term care facilities, the goal, when possible, is 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 individual 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 a child with TBI is integrated 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.
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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. Select to access the evidence report summary.
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:
- 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.
- 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.
- Categorize the retrieved studies and produce a bibliography.
- 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.
- Summarize the studies relevant to each key question.
- Construct a template for evidence tables to address the key questions by specifying important variables to define the columns in the tables.
- 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.
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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.
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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:
- Does the application of early, intensive medical rehabilitation in the acute care hospital improve outcomes for children with TBI?
- Among children diagnosed with TBI, how many are provided special education that is designed to accommodate the needs of TBI?
- Do children with TBI who receive special education designed to accommodate the needs of TBI have better outcomes than those who are provided special education that is not so designed and those who do not receive special education?
- 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?
- 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?
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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.
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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:
- How many children with TBI receive special education services?
- 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, because 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:
- Number of developmental categories included in the study.
- Study length.
- Sample selection method.
- Age range in sample at time of measurement.
- Span of developmental stages covered in age range.
- Comparison method.
- Specification of injury severity.
- Specification of location of injury.
- Span of developmental stages covered by range of age at injury.
- Time from injury to assessment.
- Analysis methods.
The 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 the effects of 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.
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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 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.
- 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.
- Interventions must be tested with experimental study designs.
- Because of the strong influence of development on all aspects of life for this population, both longitudinal and experimental studies must incorporate concepts of child and adolescent 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.
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Availability of the Full Report
The full evidence report from which this summary was derived was prepared for the Agency for Health Care Policy and Research by the Oregon Health Sciences University, Portland, OR, under contract No. 290-97-0018. The Evidence Report is archived online at the National Library of Medicine Bookshelf.
To access the original report, Rehabilitation for Traumatic Brain Injury, which is focused on adults, select summary or the full report.
Print copies of these publications are no longer available.
AHCPR Publication No. 99-E025
Current as of October 1999