what do we know about pediatric spinal cord injury?
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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. - PowerPoint PPT PresentationTRANSCRIPT
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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
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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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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
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Disclosure of Presenter• Dr. MJ Mulcahey does not have any financial
disclosures.
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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”
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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
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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
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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
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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
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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
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Annual Risk of Medical Complications
Complication %
UTI 62.3Pressure sore 19.0
Autonomic dysreflexia 17.8
Atelectasis/pneumonia 3.0Renal stone 1.6
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Annual Risk of Medical Complications
Complication %
Post-op wound infection 0.6
Ventilatory failure 0.6DVT 0.5
Pulmonary embolus 0.1
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Prevalence: Neuromuscular Scoliosis
Campbell & Bonnett, 1975 91%
Mayfield et al, 1981 98%
Dearolf & Betz et al, 1990 98%
Mulcahey, et al, 2013 93%
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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%)
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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
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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
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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
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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
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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
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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
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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)
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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)
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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)
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Prevalence: Hip Instability
• Pierre-Jacques & Betz et al, 1995– 31 of 72 (43%)
–Subluxation: 22 (70%)–Dislocation: 9 (30%)
• Minimum 3-year follow up
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Hip Instability: Precipitating Factors
• Age at Injury• Spasticity• Flaccidity• Sepsis• Scoliosis
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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,
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Hip Instability
• Increase risk – Pressure sores– Worsening spasticity– AD
McCarthy & Betz, Clinic Ortho Related Research 2005
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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
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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
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Use of the International Standards for Neurological Classification of Spinal Cord Injury
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Background
• aka “The Standards” • Evaluate the neurological
consequence • Classify the neurological
consequence
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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
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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
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The Problem• Routinely used with children • Children are “assigned” NL and classification
• “Assignment” (diagnoses) travels with children• Little reliability\validity of the anorectal examinations
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Purpose
• Evaluate reliability of the motor, sensory and anorectal examinations
• Determine lower age limit• Establish pediatric guidelines
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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
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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
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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%)
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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
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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
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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
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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
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Intro
Video: Locating the
Dermatomes on children and
adolescents with Scoliosis
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Video: Locating the Dermatomes
on a child with hip subluxation
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Sample Exam Instructions
Infant Preschool Elementary School
Middle School
Older Adolescent
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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
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Outcomes
•Functional Outcomes (Mulcahey, et al) •Psychosocial health (Kelly et al)•Adult outcomes of pediatric SCI (Zebracki & Vogel)
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Active Research in Measurement
•Diffusion Tensor Imaging– Imaging biomarker for SCI–R01 pending
•Psychometric work –SCIM-III–WISCI
•Computer Adaptive Testing
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Computer Adaptive Testing
•Is not a fixed length paper-pencil assessment completed on the computer
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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
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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
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Schematic CAT Demonstration
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Q1: I can take off my sweatshirt by pulling it over my head Response: Easy
10
30
40
70
80
50
60
40
20
Score = 62
+/- 15
Moderate
Low
High
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Score = 64
+/- 10
10
30
40
80
50
40
20
70
60
Moderate
Low
High
Q2: I can take a book out of my book bag Response: A Little Hard
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Score = 63
+/- 7
10
30
40
80
50
40
20
70
60
Moderate
Low
High
Q3:I can zip up my jacket Response: Hard
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Score = 62
+/- 5
10
30
40
80
50
40
20
70
60
Moderate
Low
High
Q4:I can hang my coat on a hook Response: Easy
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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
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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?”
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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
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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
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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
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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
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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
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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”
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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
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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
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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
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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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10
30
40
70
80
50
60
4
20
Self-care
95 items
10
30
40
70
80
50
60
4
20
10
30
40
70
80
50
60
4
20
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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10
30
40
70
80
50
60
4
20
Walk and
basic
51 items
10
30
40
70
80
50
60
4
20
10
30
40
70
80
50
60
4
20
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
+
10
30
40
70
80
50
60
4
20
Mobility
133 items
Move PWC in TV room
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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
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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
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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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10
30
40
70
80
60
4
20
10
30
40
70
80
50
60
4
20
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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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”
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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
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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.