Meeting participants reviewed key criteria for evaluating the usefulness
of currently available measures for assessing outcomes of TBI. These
criteria included:
- Developed for use with children and
youth
Because the problems resulting from TBI
in children are unique, most measures designed for adults cannot be
effectively adapted for children and youth.
- Previously used with children/youth with
TBI
Potentially useful measures that were
not developed specifically for this population need to be validated
or, at a minimum, pilot-tested first.
- Useful for measuring change during
longer-term follow-up
Some measures have ceiling or floor
effects (limitations in their ability to detect more minor or more
severe problems, respectively). Ceiling effects in particular may
limit the usefulness of a measure to assess changes over time, as
recovery occurs. Many measures have only been used to assess status at
one point of time; thus, their usefulness for measuring change is not
known.
- Norms/comparison data available for
other conditions
Measures with norms for the general
population or that have been used to document outcomes associated with
other conditions are very useful for determining the effects of TBI.
- Appropriate for the target age group
Many more measures have been developed
for use with school-aged children and youth than for very young
children. The majority of measures developed for children aged 5 years
or younger are developmental measures not specifically designed for
children with TBI. Longitudinal research that applies the appropriate
measures at each developmental level, but that also tracks important
milestones and late emerging deficits from early childhood through
older ages, will be especially challenging.
Specific Measures A wide range of
child health and other measures are available. (For tables that summarize
the measures, see Appendix A.) However, not all of these measures are
useful or appropriate for studying children and youth with TBI.
Key Measures: The
Child Health Questionnaire (CHQ) and the Pediatric Evaluation of
Disability Inventory (PEDI)
Prior to the meeting, participants
identified two promising measures for assessing outcomes of TBI in
children and youth, CHQ and the PEDI. The working group discussed the
characteristics of these measures, which are summarized below.
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Child Health Questionnaire (CHQ)
This summary was presented by Jeanne
Landgraf, who developed the measure.
Characteristics |
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Serves as a generic quality-of-life instrument.
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Assesses physical and psychosocial well being.
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Is appropriate for ages 5-17 years; version for ages <5 is under development.
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Measures 14 health concepts.
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Includes 28- or 50-item parent-completed forms.
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Includes 87-item child-completed form (a short form is currently being developed).
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Probes for information about the family.
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Includes normative data and has been used in studies of a wide range of other conditions; thus, it can be used to help estimate the burden of TBI compared to other conditions.
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Strengths |
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Is specifically developed for children and youth. Provides high reliability.
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Scores can be compared to available norms and benchmarks.
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Allows for parallel reporting of parents and children.
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Weaknesses |
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The majority of studies to date using the CHQ have used a cross-sectional design.
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Limited data about sensitivity to change over time are available.
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No published studies used it with children with TBI/cognitive impairment, but some work is currently planned or being conducted (reported by Keith Yeates and Melissa McCarthy).
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CHQ may not be as sensitive as condition-specific instruments.
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Paper and pencil version have normative data; the telephone interview version is scripted, but normative data are not available.
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Selected
Clinical Measures A wide range of clinical measures is available for assessing outcomes of
TBI. The working group discussed the applicability of these measures, some of which were originally developed for use with adults, to studies of children and youth, and the comments are summarized below: Glasgow Coma Scale (GCS)
- Is a useful indicator of severity, but not for children younger than age 5.
- Scores for the same patient vary depending on when they were collected, e.g., GCS scores collected by Emergency Medical Technicians
(EMTs) before admission are not as reliable as those collected in the ED or hospital. CDC TBI surveillance guidelines recommend use of the first GCS after admission to ED or hospital.
Children's Coma Score
- Is a modification of the Glasgow Coma Score designed to be used in children aged 3 years and younger.
- Eye opening and motor response subscales are identical to the GCS, but the verbal response subscale rates behavior/affect in preverbal populations. (Multilingual Resources Assessment Tools. Available at:
www.multilingualresources.com/ assessment.html. Accessed January 9, 2001).
- Is unclear how widely this score is being used or whether the score represents a significant improvement in the GCS for use with children. More research on this topic is needed.
Abbreviated Injury Score/Injury Severity Score
(AIS/ISS)
- Are used routinely in the clinical setting.
- Most recent version (AIS 98) is better than previous versions for assessing children.
- Because of the variability within AIS levels, researchers should consider supplementing
AIS/ISS with Therapeutic Intensity Level, which is used in some clinical settings to determine severity based on the intensity of treatment required by the patient (according to Nancy Carney).
- The AIS score for the head is highly correlated with GCS and is a useful measure of TBI severity.
Loss of Consciousness (LOC)
- Measures the length of time between injury and when the patient regains consciousness.
- Is strongly correlated with outcomes in children and adults and is a key piece of information that should be collected.
Length of Post-traumatic Amnesia (PTA)
- Measures the time from when a patient emerges from coma until he or she is no longer disoriented.
- Appears to be strongly correlated with outcome; however, it is difficult to document consistently and accurately within a hospital protocol.
- Inter-rater reliability is low; that is, different people report different lengths of PTA.
- Despite limitations, PTA should be collected and reported as accurately as possible.
Rancho Los Amigos Scale
- Is a 7-level scale for assessing early recovery in the brain injury rehabilitation setting.
- Rates behavior, cognitive functioning, and response to the environment.
- Levels range from No Response (Level I) through Purposeful-Appropriate Responses (Level VII). Multilingual Resources Assessment Tools. Available at:
www.multilingualresources.com/assessment.html. Accessed January 9, 2001).
- May be useful for research on outcomes but to date has not been used widely or evaluated for that purpose.
Pediatric Trauma Score (PTS)
- Is a composite injury score in which the injured child receives a score of
-1 (severely injured), +1 (moderately injured) or +2 (slightly injured or not injured) in each of six areas–body weight/size, airway, blood pressure, central nervous system activity, open wounds and skeletal injuries.
- (
Ford EG, Andrassy RJ. Pediatric Trauma: Initial Assessment and Management. Philadelphia:
W.B. Saunders Company; 1994).
- Score is not useful for TBI research because it does not separate head injury from injury to other body regions/functions.
Neuropsychological/psychiatric tests
- These detailed tests of cognitive and psychological functioning are frequently conducted by trained professionals.
- Results from these tests are important, particularly to document more subtle deficits, but they must be done in a clinical setting.
School Performance Assessments Assessments of school performance include achievement tests, which measure students’ academic performance, and school function assessments, which assess students’ ability to behave appropriately in the classroom. Achievement tests
- These tests of academic achievement are not sensitive to
TBI-related problems.
- Thinking and reasoning are not assessed.
- Bright students may do well based on previous learning, thus masking
TBI-related problems.
- Scores may improve even as behavior worsens.
- Achievement test results, if available for review, might provide some useful information about previous performance; however, meeting participants did not strongly recommend including them in studies assessing longer term outcomes of
TBI.
School function assessments
- These checklists are specifically designed to assess functioning in the classroom setting.
- They are helpful in detecting problems specific to the classroom, including awareness of hygiene and behavior regulation.
- Meeting participants recommended including at least some key items from school function assessments in studies of outcomes of TBI in children and youth.
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