Traumatic Brain Injury in the United States

Appendix A

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

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

-----

12, 15, 22

Can be used to assess change over time

Utilization questions within the health status scale; requires professional interpretation

CHQ

(Child Health Question-naire)

Assess physical, emotional & social well-being

5-17

10/12 & older

5 & younger

Parent

Child

Parent

Self-administered

28 or 50

-----

Yes

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

-----

Yes

-----

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

-----

QWB (Quality of Well-Being)

Assess quality of life

12 and older

Youth

Structured interview

-----

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

Structured telephone interview

-----

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

-----

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

130

152 child

186 youth

10-20

30-45

Yes

-----

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

Yes

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

Self-administered

118

-----

Yes

1, 20

Designed to assess psychopathology; may not be appropriate for brain injured population; quite long; can give inconsistent results

Behavioral / Cognitive continued

*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

-----

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

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

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

-----

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

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

15-20

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; underrepresents 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

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

-----

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

Parents / family members

Self-administered

15-20

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

Parent

Interview

-----

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

Parent

Interview

-----

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

Self-administered

5-10

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

-----

Yes

-----

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

Self-administered

-----

Yes

-----

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

30-120

-----

Yes

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

20-45

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

10-30

Yes

Requires administration by a trained professional

References for Appendix A

Achenbach System of Empirically Based Assessment Web Site. Available at: www.uvm.edu/~cbcl. Accessed October 19, 2000.
Boston University Center for Rehabilitation Effectiveness PEDI page. Available at: www.bu.edu/cre/pedi. Accessed October 19, 2000.
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Carlson EB. Trauma assessments: A clinician's guide. New York: The Guilford Press; 1997.
Child Health Questionnaire. Availble at: www.chqmanual.com. Accessed October 19, 2000.
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