What Do We Know About Pediatric Spinal
Cord Injury?
MJ Mulcahey, Ph.D., OTR\L
Thomas Jefferson University, Jefferson School of Health Professions
Department of Occupational Therapy
Disclosure of PI-RRTC Grant
• James S. Krause, PhD, Holly Wise, PhD; PT, Karla Reed,
MA, and Elizabeth Walker, MPA have disclosed a research
grant with the National Institute of Disability and
Rehabilitation Research
• The contents of this presentation were developed with
support from an educational grant from the Department
of Education, NIDRR grant number H133B090005.
However, those contents do not necessarily represent the
policy of the Department of Education, and you should
not assume endorsement by the Federal Government.
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Disclosure of Presenter
• Dr. MJ Mulcahey does not have any financial
disclosures.
Objectives
• Describe the population of youths with SCI
• Discuss morbidity and mortality and describe
associated factors
• Discuss evidence in support of the International
Standards for Neurological Classification (ISNCSCI)
• Discuss outcomes of pediatric SCI
• Describe current research
Implications for management based on “Best Evidence”
Description of the Population:
Sources
• US National SCI Model System
– <1% children under 16yrs (DeVivo, 2006; 2012)
• Vitale survey (2007)
– Estimated 1500 children per year
• Shriners Hospitals for Children SCI Data Base*
– >3,500 children up to 21 years–first time exams
– Longitudinal data collection – annual exams
– 57% children <15 years
– Primarily US based
*Annual Publications from SHC
Pediatric SCI
• 1:1 male:female ratio in children < 5 yrs
• Slightly higher in boys between 5-13 yrs
• Increasing number of boys vs. girls >13 yrs.
– Adult ratio 4:1 male:female
Hadley et al., 1988; Hamilton & Myles, 1992; Ruge, Sinson, McLone, &
Cerullo, 1988; Vogel & DeVivo, 1996, Vogel, 2004; 2012, Vitale, 2007
Pediatric SCI
• Neurological level and category vary as a function of age
– Children < 8 yrs prone to cervical injuries
– Children between 5-10 prone to paraplegia, complete injuries (lap-belt)
Vogel & DeVivo, 1996, 1997, 2006; 2012
Pediatric SCI
• MVC primary cause of injury in children (56%)
– 68% not in restraints (Vitale, 2007)
• Violence remains another leading cause
– Child abuse, physical fights, guns
• Medical\surgical causes
• Sports
– Trampolines, ATV, gymnastics, skiing, snowboard
Vogel & DeVivo, 1996, 1997; Shriners Hospitals for Children, 2011; Vitale, 2007
Morbidity: Source of Data
• Analyses of Shriners Hospital database
• Followed annually until age 21
• 5,921 follow-up interviews/exams, 2,088 patients
Data and slides provided by Dr. Michael DeVivo and presented at the 2012 Howard H. Steel
Conference on Pediatric SCI
Annual Risk of Medical Complications
Complication
%
UTI
62.3
Pressure sore
Autonomic dysreflexia
19.0
17.8
Atelectasis/pneumonia
Renal stone
3.0
1.6
Annual Risk of Medical
Complications
Complication
%
Post-op wound infection
0.6
Ventilatory failure
DVT
Pulmonary embolus
0.6
0.5
0.1
Risk of Hospitalization (%)
Age
Year 1
Year 5
0-21
31.3
22.4
21-30
31-40
41-50
30.8
33.2
34.1
22.9
23.7
23.0
Mortality: Sources of Data N=8,668
– US SCI Model Systems and SHC Longitudinal databases
– Injuries between 1935-2012
• 99% injured since 1970
– Periodic phone and mail interview
– Clinic visit
– Social security death index
– National death index
Data and slides provided by Michael DeVivo and presented at the 2012
Howard H. Steel Conference on Pediatric SCI
Mortality Odds Ratios
Risk Factor
Injury
Age < 21
Injury
Age > 22
Age + 1 year
1.06
1.07
Age at injury 0-5
1.41
-
Age at injury 6-15
1.15
-
Male
1.48
1.26
Mortality Odds Ratios
Risk Factor
Injury
Age < 21
Injury
Age > 22
White
1.36
1.71
African American
1.61
1.87
Native American
2.18
1.72
Asian or Hispanic
1.00
1.00
Mortality Odds Ratios
Risk Factor
Injury
Age < 21
Injury
Age > 22
MVA
1.22
1.18
Fall
1.20
1.26
Violence
1.51
1.40
Other etiology
1.57
1.35
Sports
1.00
1.00
Mortality Odds Ratios
Risk Factor
Injury
Age < 21
Injury
Age > 22
C1-4
2.14
2.08
C5
1.65
1.72
C6-7
1.34
1.50
C8-S4/5
1.00
1.00
Mortality Odds Ratios
Risk Factor
Injury
Age < 21
Injury
Age > 22
AIS A
1.99
1.91
AIS B
1.53
1.62
AIS C
1.54
1.32
AIS D
1.00
1.00
Mortality Odds Ratios
Risk Factor
Injury
Age < 21
Injury
Age > 22
Year 1
2.15
3.54
Year 2
1.76
1.39
Years > 3
1.00
1.00
Leading Cause of Death
by Age (%)
Cause
0-19
20-29
30-59
60+
1.
Respiratory
25.7
16.6
20.0
24.7
2.
Heart Disease
12.3
8.9
15.1
25.5
3.
Accidents
9.9
15.3
8.9
1.6
4.
Suicide
8.8
10.7
4.4
0.7
Leading Cause of Death
by Age (%)
Cause
5.
Digestive
Disease
0-19
20-29
30-59
60+
5.8
4.3
5.9
3.8
6.
PE
5.3
7.2
3.6
1.9
7.
Cancer
4.1
1.6
8.9
12.8
8.
Infections
3.5
11.3
14.6
8.9
Summary: Population Description
• SCI in children is rare
• No difference in SCI as a function of gender until after
13 years of age
• MVC are the leading cause of pediatric SCI
• LOI and severity associated with age at injury
Summary: Morbidity
• Three most common medical complications are UTI,
pressure sore and AD
• 1/3 children re-hospitalized during year one
• 1/4 children re-hospitalized annually after year 1
• No difference in trends between children in adults
Summary: Mortality
• Risk of dying similar in children and adults
– Age of injury <15 years associated with an increase
risk in early death
• Life expectancy below normal
– No progress for year 1 survivors in 30 years
• Children die from respiratory complications, heart
disease, accidents and suicide
Factors Associated with Morbidity and
Mortality
• Growth and development
• Musculoskeletal conditions
– Neuromuscular scoliosis
– Pelvic obliquity\hip instability
Vogel et al, Handbook of Clinical Neurology 2012;
Mulcahey & Betz, Pediatric Spine, 2008; Mulcahey et al,
Topics in SCI Rehab, 2004
Prevalence:
Neuromuscular Scoliosis
Campbell & Bonnett, 1975 91%
Mayfield et al, 1981
98%
Dearolf & Betz et al, 1990 98%
Mulcahey, et al, 2013
93%
Association Between Age-At-Injury
and Scoliosis
• Lancourt et al.
– 0-10 years 100%
– 11-16 years 19%
– > 16 years
12%
• Dearolf & Betz et al. 1990
– Prior to maturity: 98% (risk of surgery: 67%)
– After maturity: 20% (risk of surgery: 5%)
Study to Define Predictors of
Neuromuscular Scoliosis in Children
with SCI
• 217 youths with SCI
• Evaluation using motor, sensory
and anorectal examinations of
ISNCSCI
• Cobb Angles from Plain
Radiographs Interpretation of Cobb Angles
• 10> - diagnoses of scoliosis
• 20> - brace treatment
• 40> - surgical range
Mulcahey, et al. Topics in SCI Rehab, In press
Study to Define Predictors of
Neuromuscular Scoliosis in Children
with SCI
• Multivariate analysis to determine worst Cobb Angle
– Motor score, motor level, neurologic level, sensory
level, AIS classification, gender, age at injury
• Further evaluate effect of age
– Sub-sample minimum 2 year follow up
• Injured <12 and >12
– Odds of having spinal fusion
Predictors of Worst Curve
Parameter
Estimate
Standard
Error
P
Standard
Estimate
-1.440
0.258
0.0001
-0.387
AIS
Excluding AIS D
(N=157)
-4.034
1.538
0.0095
-0.183
Age at Injury
-1.518
0.275
0.0140
-0.405
All (N=176)
Age at Injury
Predictors of Spine Fusion
Parameter
Estimate
Standard
Error
P
Odds Ratio
Standardized
Estimate
0.107
0.039
0.007
0.899
(0.832,0.971)
-0.363
-0.104
0.040
0.009
0.901
(0.834,0.975)
-0.351
All (N=188)
Age at Injury
Excluding AIS D
(N=167)
Age at Injury
Odds Ratio for Eventual Spine Fusion
• Minimum of 2 year
follow up injured <12
(N=16) and >12 (N=27)
• Excluding AIS D, minimum
of 2 year follow up injured
<12 (N=11) and >12
(N=26)
OR=3.72 injured <12
OR=2.50 injured <12
Neuromuscular Scoliosis
• High Prevalence among children with SCI
• Age is the only strong predictor, with
statistical significance
• Underscores importance of anticipatory
guidance as part of rehabilitation
Neuromuscular Scoliosis: So What?
• Compensatory function is lost
• Increase in respiratory distress and skin
breakdown with increase in Cobb Angle
• 98% of children injured <12 require spinal
fusion (Dearolf & Betz, 1990)
– Risk for pulmonary complications,
psuedoarthrosis, infections very high
(Sharma, et al 2010)
– Vision loss reported (Samdani et al 2009)
Neuromuscular Scoliosis:
Implications for “Best Evidence”
• Anticipatory guidance – education & prevention
• TLSO
– Prescription prior to onset of curve (right at time of injury)
(Metah et al, 2006)
– Slows progression – likely not prevent (Betz, 2010)
– Wearing compliance varies (Hunter et al 2009)
– Adverse effects on reachable workspace (Sison-Williamson,
et al 2007)
– Adverse effects on ADL (Chafetz, et al 2007)
Neuromuscular Scoliosis:
Implications for “Best Evidence”
• Fusion
– Improves respiratory function, posture, sitting balance
– Greater risk for pressure sores within first year post
spine fusion (Vogel, et al.)
– Adverse effect on ability of children
• Tetraplegia, to feed self (Mulcahey, et al)
• Paraplegia, to perform bowel program (Mulcahey et al)
Prevalence: Hip Instability
• Pierre-Jacques & Betz et al, 1995
– 31 of 72 (43%)
–Subluxation: 22 (70%)
–Dislocation: 9 (30%)
• Minimum 3-year follow up
Hip Instability: Precipitating Factors
•
•
•
•
•
Age at Injury
Spasticity
Flaccidity
Sepsis
Scoliosis
Hip Instability
• Spastic 25/31 (80%)
• Flaccid 6/31 (21%)
12 year old, 4 years follow
lap belt injury, T12 AIS A,
flaccid paralysis, 70 Cobb
Angle,
Hip Instability
• Increase risk
– Pressure sores
– Worsening spasticity
– AD
McCarthy & Betz, Clinic Ortho Related Research 2005
Hip Instability: Implications for “Best
Practice”
• Prevention
– Stretch – prone
– Sleep prone
• Release soft tissue
contractures
• Bone stability
• Muscle balancing
Parent et al 2010; Parent et al 2011
Summary: Factors Associated with
Morbidity and Mortality Unique to
Children
• Growth and development
• Age at injury strongest predictor
• Neuromuscular scoliosis
– Respiratory decline, pressure sores, pelvic obliquity
• Hip instability
– Pressure sores, increased spasticity, Increase AD
Use of the International Standards
for Neurological Classification of
Spinal Cord Injury
Background
• aka “The Standards”
• Evaluate the neurological consequence
• Classify the neurological consequence
The Standards
• Reliability Studies
• Adults with relatively small samples*
• Pediatric studies**
• Motor and sensory examinations
• Classification
*Cohen 1994; 1996; 1998; Donovan 1990;
Marino 2004; 2008; ** Mulcahey 2007a;
2007b; 2009; Chafetz 2009; Vogel 2009;
Samdani 2010; Mulcahey 2011
The Standards
– Lacking
• Reliability of the anorectal examinations
–No work with Adults
–Few studies with children*
• Validity of the anorectal examination**
*Mulcahey 2007; Vogel 2009
**Wietek 2008; Samdani 2009; Vogel
2009; Samdani 2010
The Problem
• Routinely used with children
• Children are “assigned” NL and classification
• “Assignment” (diagnoses) travels with children
• Little reliability\validity of the anorectal examinations
Purpose
• Evaluate reliability of the motor, sensory and
anorectal examinations
• Determine lower age limit
• Establish pediatric guidelines
Methods
• Cross-sectional repeated measures multi-center study
• Sample of convenience
• 3 months – 21 years of age
• Chronic SCI (=>3 months duration)
– Exclusion
• Acute injury (<3 months)
• Neurological changes in last 3 months
• Mechanical ventilation without ability to communicate
• TBI and\or brachial plexus injury
Data Collection
• Seven raters
• Trained in examination (Mulcahey, et al, JSCM 2007)
• Trained in classification (Chafetz, et al, JSCM 2008)
• Four repeated examination
• Conducted by two different raters
• Four separate days
• Techniques based on 2006 standards
Results
Gender
• 181 subjects
– 236 consented
– 28 withdrew
– 27 <8 years
Race
Male
109 (60.22%)
Female
72 (39.78%)
Caucasian
138 (76.24%)
Hispanic
21 (11.60%)
African-American
13 (7.18%)
Asian
3 (1.66%)
Other
6 (3.31%)
Age at Exam*
14.5 (+/-4.2)
Age at Injury*
10 (+/-6.10)
Time Since Injury*
Type of Injury
Severity of Injury
5 (+/-4.4)
Tetraplegia
89 (49.17%)
Paraplegia
92 (50.83%)
Complete
97 (53.60%)
Incomplete
84 (46.40%)
Reliability as a Function of Age
Age
6 to 11
12 to 15
16 to 21
ICC
LCI
UCI
LT
0.98
0.98
0.99
PP
0.97
0.95
0.98
MT
0.99
0.98
0.99
DAP
0.99
0.97
0.99
AC
0.98
0.93
0.99
LT
0.99
0.98
0.99
PP
0.99
0.98
0.99
MT
0.99
0.99
0.99
DAP
0.94
0.9
0.97
AC
0.88
0.79
0.93
LT
0.99
0.98
0.99
PP
0.98
0.98
0.99
MT
0.99
0.99
0.99
DAP
0.95
0.93
0.97
AC
0.93
0.9
0.95
N
42
47
89
ICC Interpretation
<.75 poor reliability
75-.90 good reliability
Reliability S4-5 as a Function of Age
N
ICC
LCI
UCI
0.91
0.84
0.95
0.87
0.77
0.92
0.85
0.75
0.92
PPL
0.77
0.61
0.87
LTR
0.84
0.73
0.91
0.9
0.82
0.94
0.85
0.73
0.91
PPL
0.8
0.66
0.88
LTR
0.83
0.75
0.88
LTL
0.78
0.69
0.85
0.85
0.77
0.9
0.83
0.75
0.88
LTR
6yr-11yr
12yr-15yr
16yr-21yr
LTL
PPR
LTL
PPR
PPR
PPL
42
47
89
ICC
Interpretation
<.75 poor
reliability
.75-.90 good
reliability
Reliability For Classification
6 to 11
12 to 15
16 to 21
Injury Severity
AIS
ICC (95% CI)
ICC (95% CI)
0.99 (0.97-0.99)
0.98 (0.97-0.99)
0.92 (0.86-0.95)
0.96 (0.94-0.97)
0.96 (0.92-0.97)
0.92 (0.95-0.98)
N
42
47
89
ICC
Interpretation
<.75 poor
reliability
.75-.90 good
Implications for “Best Practice”
• =>6 years of age ISNCSCI should be conducted
• Difficult in some children up to 8 years of age
• DAP and VAC difficult, children injured prior to
achieving continence
• http://www.asialearningcenter.com
Intro
Video: Locating
the
Dermatomes
on children and
adolescents
with Scoliosis
Video: Locating
the Dermatomes
on a child with hip
subluxation
Sample Exam Instructions
Infant
Preschool
Elementary
School
Middle
School
Older
Adolescent
Neurologic Evaluation in Children <6
• Observational motor assessment (Calhoun, et al 2010)
• Diffusion Tensor Imaging (Mohamed et al 2010; Mulcahey
2010)
1.00
OUTCOME = ASIA ABNORMAL MOTOR LEVEL
Predictors = FA, AD, MD
Sensitivity
0.80
1.0
FA, S4-5
0.9
0.8
0.60
0.7
0.6
0.40
0.5
0.4
AUC = 0.92 (0.90, 0.94)
0.3
0.20
SENSITIVITY = 0.851
0.2
0.1
SPECIFICITY = 0.859
0.0
0.0
0.1
0.2
0.3
0.4
0.5
0.6
0.7
0.8
0.9
1.0
0.00
1 - Specificity
Mulcahey et al, Spinal Cord, Under Review
Absent
Intact
Controls
Outcomes
• Functional Outcomes (Mulcahey, et al)
• Psychosocial health (Kelly et al)
• Adult outcomes of pediatric SCI (Zebracki & Vogel)
Functional Outcome
• Traumatic injuries correlate with lower functional
outcomes
• Children >10,<15 have higher functional gains children
>15 (over time)
• Youngest children decrease in functional gains until age
10
– Prophylactic management of spine
– Precautions from medical interventions
– Capacity vs. performance
• Age at injury, level and severity of injury correlated with
outcome
N=923 FIM data admission, discharge and follow-up;
Allen, Mulcahey, Haley, et al, Spinal Cord, 2009
Psychosocial Health Outcomes
–Youth with SCI participate less than their ablebodied peers
–Most common activities are sedentary, solitary
–As youth age, overall participation decreases
–Level of injury is related to diversity and intensity
of activities
–There is a gender gap
•girls participate greater variety of activities,
more often, and with a higher enjoyment level
Kelly et al, Presented at the 2012 Howard H. Steel Conference
Long-term Outcomes of Pediatric SCI
• 410 adults who sustained their SCI  18 y/o
• 62% males
• 54% tetraplegia
• 70% with AIS A
• Age of injury, mean = 13.9 (0-18)
• Age at follow-up, mean = 30.5 (24-45)
• Duration of injury, mean = 16.2 (6-38)
Compliments of Zebracki and Vogel
Long-term Outcomes of Pediatric SCI
• Employment
– 48% employed
– 13% students
– 6% homemakers
– 32% unemployed
• Live independently
64%
• Married
21%
• Children
17%
Compliments of Zebracki and Vogel
Long-term Outcomes of Pediatric SCI
Comparison with general population
College education
Employed
Married
Live independently
SCI
40%
60%
21%
64%
Census
32%
90%
41-65%
88%
Compliments of Zebracki and Vogel
Long-term Outcomes of Pediatric SCI
Participation at older age of 35-45 years
College education
Employed
Married
Live independently
SCI
44%
59%
32%
65%
Census
33%
91%
66%
88%
Compliments of Zebracki and Vogel
Long-term Outcomes of Pediatric SCI
• Pressure ulcers
• Urinary incontinence
• Bowel incontinence
• UTI
• Dysreflexia
• Spasticity
• Latex allergy
33%
34%
13%
69%
50%
44%
10.5%
Compliments of Zebracki and Vogel
Long-term Outcomes of Pediatric SCI
• Shoulder pain
• Wrist pain
• Elbow pain
• Pain other sites
• Fractures
59%
27%
19.5%
51.5%
5%
Compliments of Zebracki and Vogel
Summary: Pediatric SCI Outcomes
• SHC Longitudinal database, functional outcomes
• Pyschosocial health outcomes
– Ongoing (Dr. Kelly, Chicago SHC)
• Long-term outcomes
– Ongoing (Drs. Zebracki and Vogel, Chicago SHC)
• One systematic review
– Orthopedic outcomes, Parent et al 2011
Active Research in Measurement
• Diffusion Tensor Imaging
– Imaging biomarker for SCI
– R01 pending
• Psychometric work
– SCIM-III
– WISCI
• Computer Adaptive Testing
Computer Adaptive Testing
• Is not a fixed length paper-pencil assessment
completed on the computer
Computer Adaptive Testing
• CAT is
– Built upon an “item bank”
– Adaptive
• Not all items are answered by each patient
• Responses to previous items determines next item
• Although patients answer different items, scores can
be compared
• Patients answer different items on repeated
administration of the same CAT
CAT
• One of the most powerful health care instruments of the
21st century
– Precision
– Minimal burden to responder (cost effective)
– Administration at point of care or remotely
– They are not static
• Can add and remove items as needed
– Synergistic with electronic medical records
– Type I Innovation
• High outcomes\impact, low cost
Schematic CAT Demonstration
Q1: I can take off my sweatshirt by pulling it over my head
Response: Easy
80
High
70
60
50
Moderate
40
30
Low
20
10
Score = 62
+/- 15
Q2: I can take a book out of my book bag
Response: A Little Hard
80
High
70
60
50
Moderate
40
30
Low
20
10
Score = 64
+/- 10
Q3:I can zip up my jacket
Response: Hard
80
High
70
60
50
Moderate
40
30
Low
20
10
Score = 63
+/- 7
Q4:I can hang my coat on a hook
Response: Easy
80
High
70
60
50
Moderate
40
30
Low
20
10
Score = 62
+/- 5
Computer Adaptive Testing
• Rules for starting and stopping
– Precision (tight SD)
– 5 items, 10 items, 15 items
• Filters
– Patients will never answer items that are not
applicable
• Walking items for persons who never walk
• Wheelchair items for persons who walk
• Gender specific items
• School items if kids are not in school
Why CAT?
• Existing measures
– Have ceiling and floor effects
• FIM, SF-36, PedsQL
– Have items that are not appropriate
• “How difficult is it for you to walk across the street?”
• “How difficult is it for you to run?”
• “How much help do you need stepping off of the
school bus?
• “How hard is it to push your wheelchair?”
Why CAT?
• Common pediatric practice
– Utilize multiple outcome measures
• high response burden
• challenges to interpretation
– Omit , add, change items
• threat to reliability and validity
• inability to interpret total score
– Utilize home-made measures without psychometric
rigor
Steps in Building CATs
Conceptual Model – content
Build broad item pool
Refine item bank
 Cognitive testing
 Expert opinion
 Patient feedback
Test for IRT assumptions
Build software algorithms for
implementation
 Validity and reliability studies
18 months
18 months
12 months
Activity Performance
Mobility
N=131 items
Self-Care
N=71 items
Participation
N=60 items
Daily Routines
N=112 items
Compared to Self
General
N=46 items
Play
N=45 items
School
N=24 items
Compared to
Others
Chores\Work
N=43 items
Ambulation
N=29 items
Manual
N=31 items
Power
N=25 items
Conceptual Model of SCI Item Banks of Activity Performance
and Participation for Youth with SCI and their Caregivers
Daily Routines Items
• I can move my chair into an elevator
• I can put a straw into a juice box
• I can put my books in my book bag
• I can empty my bladder
• I can wash my hair
Response Scales
• Child Respondent
– 8 to 21years of age
– Completed 2nd grade
• Caregiver respondent
– Caregiver of child with SCI at least four years of
age
Response Scale: Mobility & Daily
Routines
• Cannot do
“I
(my child) can’t do this on my (his) own and when I (he) need to do this I (he)
always need someone’s full help”
• Really Hard
“I (my child) am only able to do this with extra time and very hard effort. I (he)
almost always need someone’s help”
• Hard
“I (my child) am able to do this some of the time but I (he) may need extra time and it may
take a good effort. I (my child) often need someone’s help”
• A Little Hard
“I (my child) am able to do this almost all of the time but I may need extra time
and it may take a little effort” I (my child) don’t usually need help”
• Easy
“I (my child) am able to do this without support or help”
Participation Items
• I go to birthday parties
• I sleep over my friends’ house
• I go on field trips with my class
• I dance
• I drive
• I date
Child Response Scale: Participation
• I do it
o A lot less than I like
o A little less than I like
o As much as I like
o A lot less than my friends
o A little less than my
o
friends
As much as my friends
• I do not do it
o Because I can’t
o Because I do not want
to
Parent Response Scale: Participation
• My Child does it
o A lot less than he wants
o A little less than he wants
o As much as he wants
o A lot less than his friends
o A little less than his friends
o As much as his friends
• My child does not do it
o Because he can’t
o Because he does not want
to
Sample and Procedures
Prospective, cross-sectional computer-based study from
children and parents independently designed to examine
psychometric properties (unidimensionality, item fit) of item
banks and to examine simulated CATs
Child report
Parent report
N=381
N=322
Mean age 15.2 yrs.
Range 8-21
Mean age 13.6 yrs.
Range 4-21
57% paraplegic
56% paraplegic
Self-care and Daily Routines = Daily Routines
80
80
80
70
70
70
60
60
60
Check bottom skin
Greater Ability
Put on jeans and belt
Pour from carton of milk
50
+
50
=
Use spoon for ice cream
50
Drink from a can
40
4
40
4
40
4
Wash my face
30
30
30
With U-cuff, use a fork
20
20
20
Rub eyes
10
Self-care
95 items
10
Daily Routine
82 items
10
ADL
177 items
Lesser Ability
Mobility Scale
80
80
80
80
70
70
70
70
60
60
60
60
I can run
Up curb w/walker
Push MWC down ramp
50
+
50
+
50
=
Move self in bed
50
Push MWC over bump
40
4
40
4
40
4
40
4
Sit on edge of bed
30
30
30
30
Move on levels in PWC
20
20
20
20
Move PWC in TV room
10
Walk and
basic
51 items
10
Manual
WC
42 items
10
Power
WC
20 items
10
Mobility
133 items
Activity Scale Dimensionality
Child-reported data
Daily Routines
Mobility
177 items
133 items
CFA: CFI=.988; TLI=.998;
RMSEA=.089
86.2% variance
CFA= CFI=.976; TLI=.992;
RMSEA=.148
78.6% variance
Guidelines for Interpretation: CFI=>0.95; RMSEA =<0.06; TLI=>0.95
Concurrent Validity: FIM and PedsQL
Pearson Correlations of Full Item Banks
FIM-Motor
PedsQL
Daily Routine
Item Bank
0.73
Mobility Item
Bank
0.78
0.55
0.51
Simulated CATs
ICC (95% CI)
Full Item Bank
Mobility
Daily Routines
5-item
0.88 (0.84-0.94)
0.80 (0.76-0.83)
10-item
0.96 (0.95-0.98)
0.95 (0.94-0.96)
15-item
0.98 (0.97-0.99)
0.96 (0.96-0.97)
Participation Scale (Child Report)
• 51 uni-dimensional self items
• 52 uni-dimensional peer items
80
70
80
60
70
Less Than I Want
Less Than My Friends
Sleep over friend’s house
Dinner at a friend’s house
60
On community team or club
40
4
50
Keep bedroom clean
30
20
10
40
4
At home, get snacks
30
20
10
Play video games
Out to eat with family
As Much As I Want
As Much As My Friends
Participation Scale Dimensionality
Child-reported data
Self
Friends
51 items
52 items
CFA: CFI=.905 TLI=.951;
RMSEA=.089
CFA: CFI=.902; TLI=.953;
RMSEA=.090
Guidelines for Interpretation: CFI=>0.95; RMSEA =<0.06; TLI=>0.95
Simulated CATs of Participation
r correlation
Self
Friend
Full Item Bank N=51
~
CAT-15
0.96
CAT-10
0.93
CAT-5
0.85
Full Item Bank N=52
~
CAT-15
0.95
CAT-10
0.92
CAT-5
0.85
Content Range Comparison
5
4
SCIM items range
3
FIM items range
Dailiy routine
PEDQSL
FIM
SCIM
2
PEDSQL items range
1
Daily Routine items range
S2
S1
M
S1
S2
40
50
60
70
Sample Scores
0
0
10
20
30
80
90
Content Range Comparison
5
4
SCIM items range
3
FIM items range
Wheeled Mobility
PEDQSL
FIM
SCIM
2
PEDSQL items range
1
Wheeled mobility items range
S2
Sample Scores
S1
M
S1
S2
40
50
60
70
0
0
10
20
30
80
90
Precision of Child Reported Daily
Routines - CATs*
70
70
60
50
40
30
r=0.91
60
Score based on full item pool
Score based on full item pool
60
Score based on full item pool
70
50
40
30
r=0.96
50
40
30
20
20
20
10
10
10
10
20
30
40
5-CAT score
50
60
70
10
20
30
40
50
60
70
r=0.98
10
20
30
40
50
60
15-CAT score
10-CAT score
Simulated CAT
Full Item Bank (N=196)
5-Item
ICC
0.89
95% CI
0.85,0.93
10-Item
15-Item
0.96
0.97
0.90,0.98
0.92,0.94
70
Discussion: CAT
Built item banks
 Mobility, Daily Routines and Participation
 Parent and child report
Met requirements for CAT
CATs
 Broader content range, less gaps legacy measures
 Strong correlation with full item bank
Bent, et al Topics in SCI Rehab, In Press; Mulcahey, et al Spinal Cord
2012; Mulcahey et al AJOT 2010; Mulcahey et al Dev Neurorehab 2009
Discussion
• Completed normative study of over 2,000 typically
developing children in US
– Establish normative trajectories
• Create linkages between pediatric CAT and adult SCI
CAT (Tulsky\Jette)
– One assessment throughout lifetime
• Field test score reporting mechanisms
Summary
• Availability of CAT for the assessment of activity and
participation
– Efficient and meaningful
– Point of care or remotely
– Child and parent reported outcomes
– Adult linkage will address issue of longitudinal
measurement
What Do We Know About Pediatric SCI?
• Relatively rare, with morbidity and mortality trends similar to
adults
– Children injured at younger age are at risk of dying earlier
– Children die due to respiratory failure, heart disease,
accidents and suicide
• Growth and Development associated with morbidity and mortality
– Neuromuscular scoliosis
– Pelvic obliquity
• ISNCSCI should be used with children=>6
– DTI
What Do We Know About Pediatric SCI?
• Functional Outcomes – SHC longitudinal database
– Vary as a function of age at injury and age at exam
– Influenced by treatment to mitigate secondary complications
• Psychosocial Outcomes – SHC multi-center study (Kelly, PI)
– Participation is less than TD peers
– Participation is done in isolation, sedentary
– Boys participate less
• Long-term Outcomes – SHC multi-center study (Vogel, PI)
– Over-educated, underemployed
– Reduced depression compared with adult-onset SCI
What Do We Know About Pediatric SCI?
• Lack outcomes instruments
– Appropriate content and content range
– Psychometric support
– Barrier to outcomes research
• Computer Adaptive Tests
– Established for pediatric and adult SCI
– Precise, broader content range
– Reliability of scores, validity of scales
• “Best” evidence is not always “highest level”
Future
• Multi-center trials – beyond SHC
• Greater representation of children
– Clinical trials
– Funding agencies
• Recovery paradigms for therapy
• Influence on outcomes
– Carer education, income, family status
– Geographical location
• Psychometric support
– Notable SCI instruments
– International data sets
Acknowledgements
Funding provided by Shriners Hospitals for Children Grants
9146; 8956; 9171; 9143
•Lawrence Vogel, MD
•Erin Kelly, PhD
•Kathy Zebracki, PhD
•Randy Betz, MD
•Amer Samdani, MD
•
Mike DeVivo, Dr P.H.
•
Feroze Mohamed, PhD
•Stephen Haley, PhD*
•Feng Tian PhD
•Pengsheng Ni, MD, PhD
•Alan Jette, PhD
•Wendy Coster, PhD
*deceased