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Appendix A: Overview of Outcome Assessments Available for Use with Children and Youth with TBI

Historical Document

Note: This publication ( Traumatic Brain Injury in the United States: Assessing Outcomes in Children) is from 2000 and is included for historical purposes. See the Get the Facts and Data & Statistics pages for the most current data.

Quality of Life

Title Purpose Age Range (yrs) Parent or child response Administration mode Number of items Time (min) Reliability studies? Validity studies? Used in child / youth TBI studies? Ref. Strengths Weaknesses
CHIP (Child Health & Illness Profile) Assess physical & mental health 11-17 Child / youth Self- administered 153 30-45 Yes Yes ----- 12, 15, 22 Can be used to assess change over time Utilization questions within the health status scale; requires professional interpretation
CHQ (Child Health Questionnaire) Assess physical, emotional & social well-being 5-17 10/12 & older 5 & younger Parent Child   Parent Self-administered 28 or 50 87   87 ----- Yes Yes Yes 6, J. Landgraf Specifically developed for children/youth; well normed; used in other pediatric populations; allows parallel child & parent reports; telephone interview scripted Limited data on sensitivity to change; under 5 version not yet normed; may not be as sensitive as condition-specific instrument; paper-&- pencil version normed but telephone interview not normed
COOP Charts (Dartmouth Primary Care Cooperative Info. Project) Assess functioning and health-related quality of life 8-12   13-18 Child   Youth Self-administered 9   14 ----- Yes Yes ----- 12   Floor and ceiling effects; relies on sample size for power
PedsQL (Pediatric Quality of Life Inventory) Assess health- related quality of life 8-18 Child/ youth Parent Child: interview Youth & parent: self-administered 15 core, 30 disease-specific ----- Yes Yes ----- 25    
QWB (Quality of Well-Being) Assess quality of life 12 and older Youth Structured interview ----- 15 For adults Yes ----- 3, 8   Weighted based on population preferences; adapted from adult measure; low parent/ youth correlation; not designed for a neurological population

Epidemiology

Title Purpose Age Range (yrs) Parent or child response Administration mode Number of items Time (min) Reliability studies? Validity studies? Used in child / youth TBI studies? Ref. Strengths Weaknesses
NHIS (National Health Interview Survey) Assess prevalence of certain health- related conditions in the US 1988 Child Supp: 0-18 1994 Disability Supp: 0-18 Parent   Parent   Structured telephone interview Structured telephone interview 65   -----   -----   -----   -----   -----   -----   -----   yes   -----   12, 21    
OCHS (Ontario Child Health Survey) Assess prevalence of emotional & behavioral disorders 4-16   12-16   Parent   Youth   Interview & self-administered   304   169   -----   ----- Yes Yes ----- 12    

Behavioral/Cognitive

Title Purpose Age Range (yrs) Parent or child response Administration mode Number of items Time (min) Reliability studies? Validity studies? Used in child / youth TBI studies? Ref. Strengths Weaknesses
*BASC (Behavior Assessment System for Children) Measure anxiety, depression, aggression, coping, social relationships 2.5-18   8-18 Parent/ teacher Child/ youth Self- administered Self- administered 130   152 child 186 youth 10-20   30-45 Yes Yes ----- 14 Normed; relatively brief  
*BRIEF (Behavior Rating Inventory of Executive Function) Assess executive functioning including self-monitoring, organization-al control, & individual planning 5-18   2.5-5   11-22 Parent & teacher Parent   Youth   Self-administered Self-administered Self-administered 86 10 Yes Yes Yes 10 5-18 year parent version normed; more specific than some other measures 2.5-5 year parent and 11-22 year youth versions still being normed; rather long
*CBCL (Child Behavior Checklist) Assess children's competencies & behavioral/ emotional problems 1.5-5   4-18 Parent   Parent Self-administered Self-administered 99   118 ----- Yes Yes Yes 1, 20   Designed to assess psychopathology; may not be appropriate for brain injured population; quite long; can give inconsistent results

*FS-II(R)

(Functional Status II(R))

Assess behavioral response to illness that interferes with normal social roles

0-16

Parent

Structured interview

long: 43

short: 14

-----

-----

Yes

Yes

-----

-----

12, 15, 23

Can be used repeatedly to document change

Designed for lower end of the functional continuum; permission must be obtained from authors

Functional

Title Purpose Age Range (yrs) Parent or child response Administration mode Number of items Time (min) Reliability studies? Validity studies? Used in child / youth TBI studies? Ref. Strengths Weaknesses
*PEDI (Pediatric Evaluation of Disability Inventory) Measure capability & performance of functional activities 0.5-7.5 Parents and/or physicians Interview or direct observation 41 45 Yes Yes Yes 2, 9 S. Haley Incorporates more cognitive, behavioral, & safety components than WeeFIM Primarily a rehab instrument; limited age range
*PEDI II (Pediatric Evaluation of Disability Inventory, Version II) Measure ADLs, social/ behavioral activities & community participation 0-18 Clinical staff Parent Self-administered   44 45 Planned Planned Designed for TBI S. Haley Focuses more on community participation than PEDI; some questions may be useful for TBI surveillance Still in development; questionable inter-rater reliability; too detailed for surveillance; focuses on rehab, more severe injuries, people who receive services
*SIB (Scales of Independent Behavior) Assess adaptive & maladaptive behavior 0-80+ Parent Structured interview or checklist long: 259 short: 40 45-60 15-20 Yes Yes ----- 11, 18, 19 Global index of independence; considers initiation of activity  
*VABS (Vineland Adaptive Behavior Scales) Survey activities the child/youth habitually demonstrates in the environment 0-18 Parent Semi-structured interview 297 30-60 Yes Yes Yes 11, 16 Short form has global index of independence Complicated interview process
*WeeFIM (Functional Independence Measure for Children) Assess functional independence by focusing on dependence 0.5-7 Parent Interview or direct observation 18 15-20 Yes Yes Yes 9, 15, 24 Can be used repeatedly to document change Difficult to teach to interviewers with no rehab experience; designed for inpt assessment of kids with serious injury; ceiling effect; under
represents cognitive defects

Educational/Vocational/Recreation

Title Purpose Age Range (yrs) Parent or child response Administration mode Number of items Time (min) Reliability studies? Validity studies? Used in child / youth TBI studies? Ref. Strengths Weaknesses
*PPSC (Play Performance Scale for Children) Assess play performance 0.5-16 Parent or clinician Self-administered Single scale 2 Yes Yes ----- 13, 15 Assessment can be done by non-professionals; easy to administer, analyze & interpret Used primarily in oncology studies
*PSO (Post-Secondary Outcomes) Assess educational & vocational status post-high school Youth & parent Structured interview   ----- ----- ----- ----- Designed for TBI Bonnie Todis    
*SFA (School Function Assessment) Assess ability to perform functional tasks necessary for the academic & social aspects of education K-6th grade ----- Interview / evaluation ----- ----- ----- Yes ----- 7 May have useful elements Long

Family Functioning

Title Purpose Age Range (yrs) Parent or child response Administration mode Number of items Time (min) Reliability studies? Validity studies? Used in child / youth TBI studies? Ref. Strengths Weaknesses
*FAD (McMaster Family Assessment Device) Assess global family functioning na Parents / family members Self-administered 53 15-20 Yes Yes Yes 9, 27   Not designed to measure impact on family; not sensitive to change over time
*FBII (Family Burden of Injury Interview) Assess burden of pediatric TBI on families na Parent Interview 27 ----- Yes Yes Yes 4, 27 Sensitive to change over time May not be applicable to non-TBI groups; rather long
*IOF-G (Impact on the Family Scale, Version G) Measure impact of pediatric disability on family na Parent Interview 34 ----- ----- Yes Yes 15, 27 Brief, useful; designed to be more sensitive to change Difficult to get; may not be as useful as FBII

**Depression

Title Purpose Age Range (yrs) Parent or child response Administration mode Number of items Time (min) Reliability studies? Validity studies? Used in child / youth TBI studies? Ref. Strengths Weaknesses
BDI (Beck Depression Inventory) Evaluate depressive symptoms Youth Youth Self-administered 21 5-10 Yes Yes ----- 17, 20   Measuring depression may not be as important in children/ youth as in adults
CDI (Child Depression Inventory) Assess frequency of depressive symptoms 8-17 Child / youth Self-administered 27 ----- ----- Yes ----- 26   Measuring depression may not be as important in children/ youth as in adults
CES-D (Center for Epidemiological Studies Depression Scale) Measure current depressive symptoms Youth Youth Self-administered 20 ----- Yes Yes ----- 9   Measuring depression may not be as important in children/ youth as in adults

**PTSD

Title Purpose Age Range (yrs) Parent or child response Administration mode Number of items Time (min) Reliability studies? Validity studies? Used in child / youth TBI studies? Ref. Strengths Weaknesses
CAPS-CA (Clinician Administered PTSD Scale, Child/ Adolescent version) Measure PTSD-related symptoms 7-18 Child/ youth Structured interview 33 30-120 ----- ----- Yes 5 Can assess impact of symptoms on functioning; extremely detailed and thorough Requires a longer time period than other assessments; requires administration by a trained professional
CPTS-RI (Child Posttraumatic Stress Reaction Index) Measure PTSD-related symptoms 6-17 Child/ youth Parent Semi-structured interview 20 20-45 Yes Yes Yes 5, 28 Relatively brief and easy to administer Does not inquire about all DSM-IV symptoms; parent version not yet validated
TESI (Traumatic Events Screening Inventory) Assess trauma history 4-18 Child/ youth Parent Semi-structured interview Interview or self-administered 15   19 10-30   10-30 Yes Yes Yes 5   Requires administration by a trained professional

 

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