what do we know about pediatric spinal cord injury?

What Do We Know About Pediatric Spinal Cord Injury?

MJ Mulcahey, Ph.D., OTR\LThomas 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.

Accreditation• The Medical University of South Carolina is accredited by the Accreditation

Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians. The Medical University of South Carolina designates this live activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

• In accordance with the ACCME Essentials &Standards, anyone involved in planning or presenting this educational activity will be required to disclose any relevant financial relationships with commercial interests in the healthcare industry. This information is listed below. Speakers who incorporate information about off-label or investigational use of drugs or devices will be asked to disclose that information at the beginning of their presentation.

• The Center for Professional Development is an approved provider of the continuing nursing education by the South Carolina Nurses Association an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation

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 62.3Pressure sore 19.0

Autonomic dysreflexia 17.8

Atelectasis/pneumonia 3.0Renal stone 1.6

Annual Risk of Medical Complications

Complication %

Post-op wound infection 0.6

Ventilatory failure 0.6DVT 0.5

Pulmonary embolus 0.1

Risk of Hospitalization (%)

Age Year 1 Year 5

0-21 31.3 22.4

21-30 30.8 22.931-40 33.2 23.741-50 34.1 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 FactorInjury

Age < 21Injury

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 FactorInjury

Age < 21Injury

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 FactorInjury

Age < 21Injury

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 FactorInjury

Age < 21Injury

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 FactorInjury

Age < 21Injury

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 FactorInjury

Age < 21Injury

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 0-19 20-29 30-59 60+

5. Digestive Disease 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 RadiographsInterpretation 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

All (N=176)Age at Injury -1.440 0.258 0.0001 -0.387

AIS -4.034 1.538 0.0095 -0.183Excluding AIS D (N=157)

Age at Injury -1.518 0.275 0.0140 -0.405

Predictors of Spine Fusion

Parameter Estimate Standard Error

P Odds Ratio Standardized Estimate

All (N=188)Age at Injury 0.107 0.039 0.007 0.899

(0.832,0.971)-0.363

Excluding AIS D (N=167)

Age at Injury -0.104 0.040 0.009 0.901(0.834,0.975)

-0.351

Odds Ratio for Eventual Spine Fusion

• Minimum of 2 year follow up injured <12 (N=16) and >12 (N=27)

OR=3.72 injured <12

• Excluding AIS D, minimum of 2 year follow up injured <12 (N=11) and >12 (N=26)

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

• 181 subjects– 236 consented– 28 withdrew– 27 <8 years

Gender Male 109 (60.22%)Female 72 (39.78%)

Race

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*   5 (+/-4.4)

Type of InjuryTetraplegia 89 (49.17%)Paraplegia 92 (50.83%)

Severity of InjuryComplete 97 (53.60%)Incomplete 84 (46.40%)

Reliability as a Function of AgeAge ICC LCI UCI N

6 to 11

LT 0.98 0.98 0.99

42

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

12 to 15

LT 0.99 0.98 0.99

47

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

16 to 21

LT 0.99 0.98 0.99

89PP 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 ICC Interpretation<.75 poor reliability75-.90 good reliability>.90 strong reliability

Reliability S4-5 as a Function of AgeN ICC LCI UCI

6yr-11yr

LTR

42

0.91 0.84 0.95LTL 0.87 0.77 0.92PPR 0.85 0.75 0.92PPL 0.77 0.61 0.87

12yr-15yr

LTR

47

0.84 0.73 0.91LTL 0.9 0.82 0.94PPR 0.85 0.73 0.91PPL 0.8 0.66 0.88

16yr-21yr

LTR

89

0.83 0.75 0.88LTL 0.78 0.69 0.85PPR 0.85 0.77 0.9PPL 0.83 0.75 0.88

ICC Interpretation<.75 poor reliability.75-.90 good reliability>.90 strong reliability

Reliability For Classification

Injury Severity AIS

ICC (95% CI) ICC (95% CI) N

6 to 110.99 (0.97-0.99) 0.98 (0.97-0.99)

42

12 to 150.92 (0.86-0.95) 0.96 (0.92-0.97)

47

16 to 210.96 (0.94-0.97) 0.92 (0.95-0.98)

89

ICC Interpretation<.75 poor reliability.75-.90 good reliability>.90 strong reliability

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)

Sensitivity

0.0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1.0

1 - Specificity

0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0

OUTCOME = ASIA ABNORMAL MOTOR LEVEL Predictors = FA, AD, MD

AUC = 0.92 (0.90, 0.94)

SENSITIVITY = 0.851

SPECIFICITY = 0.859

Absent Intact Controls0.000.100.200.300.400.500.600.700.800.901.00

FA, S4-5

Mulcahey et al, Spinal Cord, Under Review

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 able-bodied 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 SCIComparison with general population

SCI CensusCollege education 40% 32%Employed 60% 90%Married 21% 41-65%Live independently 64% 88%

Compliments of Zebracki and Vogel

Long-term Outcomes of Pediatric SCIParticipation at older age of 35-45 years

SCI CensusCollege education 44% 33%Employed 59% 91%Married 32% 66%Live independently 65% 88%

Compliments of Zebracki and Vogel

Long-term Outcomes of Pediatric SCI

•Pressure ulcers 33%•Urinary incontinence 34% •Bowel incontinence 13%•UTI 69%•Dysreflexia 50%•Spasticity 44%•Latex allergy 10.5%

Compliments of Zebracki and Vogel

Long-term Outcomes of Pediatric SCI

•Shoulder pain 59%•Wrist pain 27%•Elbow pain 19.5%•Pain other sites 51.5%•Fractures 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

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Score = 62

+/- 15

Moderate

Low

High

Score = 64

+/- 10

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Moderate

Low

High

Q2: I can take a book out of my book bag Response: A Little Hard

Score = 63

+/- 7

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Moderate

Low

High

Q3:I can zip up my jacket Response: Hard

Score = 62

+/- 5

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Moderate

Low

High

Q4:I can hang my coat on a hook Response: Easy

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 poolRefine item bank

Cognitive testing Expert opinion Patient feedback

Test for IRT assumptionsBuild software algorithms for

implementation Validity and reliability studies

18 months

18 months

12 months

Activity Performance Participation

N=60 items

Mobility

N=131 items

General

N=46 items

Ambulation

N=29 itemsManual

N=31 items

Power

N=25 items

Self-Care

N=71 items

Daily Routines

N=112 items

Play

N=45 items School

N=24 items

Chores\Work

N=43 items

Compared to SelfCompared to

Others

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 ito A lot less than I likeo A little less than I likeo As much as I like

o A lot less than my friendso A little less than my friendso As much as my friends

• I do not do ito Because I can’to Because I do not want to

Parent Response Scale: Participation

•My Child does ito A lot less than he wantso A little less than he wantso As much as he wants

o A lot less than his friendso A little less than his friendso As much as his friends

•My child does not do ito Because he can’to Because he does not want to

Sample and ProceduresProspective, 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=322Mean age 15.2 yrs. Range 8-21

Mean age 13.6 yrs.Range 4-21

57% paraplegic 56% paraplegic

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Self-care

95 items

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Daily Routine

82 items

ADL

177 items

Self-care and Daily Routines = Daily Routines

Lesser Ability

Greater Ability

+ =

Check bottom skin

Put on jeans and belt

Pour from carton of milk

Use spoon for ice cream

Drink from a can

Wash my face

With U-cuff, use a fork

Rub eyes

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Walk and

basic

51 items

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Manual

WC

42 items

Power

WC

20 items

Mobility Scale

+ =

I can run

Up curb w/walker

Push MWC down ramp

Move self in bed

Push MWC over bump

Sit on edge of bed

Move on levels in PWC

+

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Mobility

133 items

Move PWC in TV room

Activity Scale Dimensionality

Child-reported data Daily Routines Mobility

177 items 133 items

CFA: CFI=.988; TLI=.998; RMSEA=.089 CFA= CFI=.976; TLI=.992;

RMSEA=.148

86.2% variance 78.6% variance

Guidelines for Interpretation: CFI=>0.95; RMSEA =<0.06; TLI=>0.95

Pearson Correlations of Full Item Banks

Daily Routine Item Bank

Mobility Item Bank

FIM-Motor 0.73 0.78

PedsQL 0.55 0.51

Concurrent Validity: FIM and PedsQL

Simulated CATsICC (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)

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Participation Scale (Child Report)

As Much As I Want

As Much As My Friends

Less Than I Want

Less Than My FriendsSleep over friend’s house

On community team or club

Dinner at a friend’s house

Out to eat with family

Keep bedroom clean

At home, get snacks

Play video games

• 51 uni-dimensional self items•

52 uni-dimensional peer items

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

    r correlationSelf Full Item Bank N=51 ~

  CAT-15 0.96

CAT-10 0.93  CAT-5 0.85

Friend Full Item Bank N=52 ~

CAT-15 0.95

CAT-10 0.92

CAT-5 0.85

Simulated CATs of Participation

Content Range Comparison

S2 S1 M S1 S2Sample Scores

Daily Routine items range

PEDSQL items range

FIM items range

SCIM items range

0

1

2

3

4

5

0 10 20 30 40 50 60 70 80 90

Dailiy routine

PEDQSL

FIM

SCIM

Content Range Comparison

S2 S1 M S1 S2Sample Scores

PEDSQL items range

FIM items range

SCIM items range

Wheeled mobility items range

0

1

2

3

4

5

0 10 20 30 40 50 60 70 80 90

Wheeled Mobility

PEDQSL

FIM

SCIM

Precision of Child Reported Daily Routines - CATs*

10

20

30

40

50

60

70

10 20 30 40 50 60 70

5-CAT score

Scor

e ba

sed

on fu

ll ite

m p

ool

r=0.91

10

20

30

40

50

60

70

10 20 30 40 50 60 70

10-CAT score

Scor

e ba

sed

on fu

ll ite

m p

ool

r=0.96

10

20

30

40

50

60

70

10 20 30 40 50 60 70

15-CAT score

Scor

e ba

sed

on fu

ll ite

m p

ool

r=0.98

Simulated CAT Full Item Bank (N=196)

  ICC 95% CI5-Item 0.89 0.85,0.9310-Item 0.96 0.90,0.9815-Item 0.97 0.92,0.94

Discussion: CATBuilt item banks

Mobility, Daily Routines and Participation Parent and child report

Met requirements for CATCATs

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

AcknowledgementsFunding 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

•Stephen Haley, PhD*•Feng Tian PhD•Pengsheng Ni, MD, PhD•Alan Jette, PhD•Wendy Coster, PhD

*deceased

• Feroze Mohamed, PhD

• Mike DeVivo, Dr P.H.