PUBLIC HEALTH MODEL FOR Overview of CDC cerebral palsy (CP) - - PowerPoint PPT Presentation

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Marshalyn Yeargin-Allsopp, MD National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention 17th Annual UCSF Developmental Disabilities Conference March 9, 2018

A Population Perspective on Cerebral Palsy: Findings from Current Surveillance and Research

Developmental Disabilities Branch National Center on Birth Defects and Developmental Disabilities

I have nothing to disclose.

.. Presentation Overview

• Definition of public health surveillance
• Overview of CDC cerebral palsy (CP) surveillance
• Frequency and characteristics of CP
• Disparities in CP: birthweight/gestational age, sex, race,

socioeconomic status and motor function

• How can we use these data to improve outcomes and quality of

life for individuals with CP?

PUBLIC HEALTH MODEL FOR CEREBRAL PALSY

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Public Health Model

Surveillance Epidemiologic Research Prevention

Partnerships

What is Public Health Surveillance?

• The ongoing, systematic

collection, analysis, and interpretation of data (e.g., regarding agent/hazard, risk factor, exposure, health event) essential to the planning, implementation, and evaluation

• f public health practice, closely

integrated with the timely dissemination of these data to those responsible for prevention and control.

Teutsch SM, Churchill RE. Principles and practice of public health surveillance: 2nd ed. Oxford University Press. 2000.

1979: How Many Children Have a Developmental Disability? The Impetus for Cerebral Palsy Surveillance at CDC

1968: Start of birth defects surveillance at CDC 1979-80: Request for data on intellectual disability and cerebral palsy 1981: EIS Officer assigned to Birth Defects Branch to study developmental disabilities 1981-83: Pilot study of MR/ID in DeKalb County, GA

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Goals of the ADDM CP Network

• Obtain a complete count of the number of children with CP in

each project area.

• Provide comparable, population-based CP prevalence estimates

in different sites.

• Study if CP is more common in some groups of children than in
• thers, and if rates are changing over time.

CDC’s Cerebral Palsy Surveillance Method

Trained abstractors review and abstract selected records at multiple data sources in the community that educate, diagnose, treat, and provide services to children with developmental disabilities. Trained clinicians review abstracted information from all data sources for a given

• child. These trained clinicians then

determine if the child meets the case status for CP

Multisource, records-based surveillance methodology

Ongoing, Population-Based Surveillance

Strengths

• Active record review
• Multiple community sources
• Does not rely on previously

documented CP diagnoses

• Can examine CP by subtype,

race/ethnicity & co-occurring DDs

• Objective, reliable measures
• Ability to link to other

datasets

• Minimal burden
• Ongoing program to monitor

trends

• Extensive QC measures

Limitations

• More labor intensive and

costly to operate than passive systems

• Timeliness
• May underestimate children

with mild CP who have not come to the attention of service providers early in childhood

• Dependent on the

availability/quality of records

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Definition of CP for Surveillance

Defined as a group of permanent disorders of the development of movement and posture that are attributed to non-progressive disturbances that

• ccurred in the developing brain.*

– The motor disorders of CP are often accompanied by disturbances of sensation, perception, mental ability, communication, and behavior.* – CP is also often accompanied by co-occurring epilepsy; and by secondary musculoskeletal problems.* – The impairment of motor function may result in paresis, involuntary movement, or incoordination. – CP does not include motor disorders that are transient, that result from progressive disease of the brain, or that are due to spinal cord abnormalities/injuries. – CP acquired after birth (post-neonatal CP) are included as cases.

*Modification of the definition by Rosenbaum L, Paneth N, Leviton A, Goldstein M, Bax, M. The definition and classification of cerebral palsy. Dev Med Child Neurol. 2007;49(Suppl 109):8-14

SURVEILLANCE FINDINGS: THE BASICS

Frequency of Cerebral Palsy ADDM Network, 2006-2010

0.5 1 1.5 2 2.5 3 3.5 4 2006 2007 2008 2009 2010

Prevalence per 1,000 children aged 8 years Year

Durkin et al., 2016

SURVEILLANCE FINDINGS: CHARACTERISTICS OF THE POPULATION

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Percentage of Low Birth Weight children with CP ADDM Network, 2006-2010

10 20 30 40 50 60

2006 2008 2010 Percentage of children with CP born at low birth weight Year

Durkin et al., 2016

Cerebral Palsy More Common among Boys ADDM Network, 2006-2010

0.5 1 1.5 2 2.5 3 3.5 4

2006 2008 2010 Prevalence per 1,000 Year

Boys Girls

Durkin et al., 2016

Majority of Children Have Spastic Cerebral Palsy

Spastic, 77.4% Non-Spastic, 8.2% Other, 14.4%

• Non-Spastic includes dyskinetic,

ataxic, hypotonic, and dyskinetic- ataxic

• Other includes spastic-ataxic,

spastic-dyskinetic, and cerebral palsy not otherwise specified

Durkin et al., 2016

Many Children with Cerebral Palsy Have Co-Occurring Epilepsy and/or Autism

• 41% with co-occurring epilepsy
• 6.9% with co-occurring autism

– Overall prevalence of autism among US children is about 1-2% → Prevalence of autism among children with CP seems to be higher than among their peers without CP

Christensen et al., 2014

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Over Half of Children with Cerebral Palsy Walk Independently

Walks independently, 58.2% Uses hand-held mobility device, 11.3% Limited or no walking, 30.5%

• Walking ability data available on

74.7% of children identified with CP by ADDM CP Network

Christensen et al., 2014

SURVEILLANCE FINDINGS: DISPARITIES IN CEREBRAL PALSY

Cerebral Palsy More Common among Black Children than White Children, ADDM Network 2006-2010

0.5 1 1.5 2 2.5 3 3.5 4

2006 2008 2010 Year

Non-Hispanic White Non-Hispanic Black

Durkin et al., 2016

Frequency per 1,000

Role of Socioeconomic Status and Perinatal Factors in Racial Disparities

Tested three hypotheses:

1. Risk of CP declines with increasing SES (maternal education) 2. Observed racial/ethnic disparity in CP risk is due to confounding

• r is mediated by racial disparities in SES

3. Perinatal factors (PTB & SGA) mediate the association between race as well as maternal education and CP risk

Durkin et al., 2015

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Role of Socioeconomic Status and Perinatal Factors in Racial Disparities: Hypothesis 1

SES Category All CP Risk Ratio Spastic CP Risk Ratio Non-Spastic and Unspecified CP Risk Ratio Low 1.65 1.85 0.99 Middle 1.34 1.43 1.10 High Reference Reference Reference

Durkin et al., 2015

Role of Socioeconomic Status and Perinatal Factors in Racial Disparities: Hypothesis 2

Race/Ethnicity Category Spastic CP Risk Ratio Spastic CP Odds Ratio

(after adjusting for SES*)

White Reference Reference Black 1.52 1.35 Hispanic 0.89 0.72 Other/Undetermined 1.08 1.07

*SES in this analysis is based on maternal educational attainment

Durkin et al., 2015

Role of Socioeconomic Status and Perinatal Factors in Racial Disparities: Hypothesis 3

Race/Ethnicity Category All CP Odds Ratio Spastic CP Odds Ratio Non-Spastic and Unspecified CP Odds Ratio White Reference Reference Reference Black 0.87 0.92 0.68 Hispanic 0.75 0.77 0.71

Odds ratios for each category are adjusted for: SES, sex, maternal age, gestational age at birth, small for gestational age, documented receipt of prenatal care, and multiple birth

Durkin et al., 2015

Role of Socioeconomic Status and Perinatal Factors in Racial/Ethnic Disparities

Tested three hypotheses and found:

• 1. Risk of CP declines with increasing SES
• 2. Observed racial/ethnic disparity in CP risk is due to confounding
• r is mediated by racial/ethnic disparities in SES
• 3. Perinatal factors (PTB & SGA) mediate the association between

race as well as maternal education and CP risk

Durkin et al., 2015

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Role of Socioeconomic Status and Perinatal Factors in Racial Disparities

 Further research needed:

• Causal mechanisms underlying associations between low SES and

spastic CP

• Effects of other components of SES: income, occupation, insurance

coverage, access to prenatal care

• Longitudinal trajectories—evaluation of direction of association

between CP and disparities in race/ethnicity and SES

 Public health goal: reduce risk of CP in the population overall

to the level of risk experience by offspring of college-educated mothers

• How might we achieve this goal?

Durkin et al., 2015

Racial Disparities in Severity of Gross Motor Function

Maenner et al., 2012

Gross Motor Limitations Black-White Prevalence Odds Ratio

GMFCS Level I & II 0.9 GMFCS Level III 1.6 GMFCS Level IV & V 1.7

Racial Disparities in Severity of Gross Motor Function

 Potential mechanisms?

• Racial differences in risk factors
• Access to interventions
• Under-identification of mild CP in

black children

Maenner et al., 2012

WHERE DO WE GO FROM HERE?

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Where Do We Go From Here? A New Look at Trends in Cerebral Palsy over Time

Van Naarden Braun et al., 2016

Van Naarden Braun, 2016

Where Do We Go From Here?

A New Look at Trends in Cerebral Palsy Birth Prevalence over Time

10 20 30 40 50 60 1985-1988 1991-1996 1998-2002 Prevalence per 1,000 1 yr survivors <1500 G 1500-2499 G >= 2500 G TOTAL 10 20 30 40 50 60 1985-1988 1991-1996 1998-2002 Prevalence per 1,000 1 yr survivors < 32 WKS 32-36 WKS >= 2500 WKS TOTAL

Where Do We Go From Here?

A New Look at Trends in Cerebral Palsy Birth Prevalence over Time By Race/ethnicity and Birth weight

Van Naarden Braun, 2016 *p<0.05

1985-1988 1992-1996 1998-2002 Average Annual Prevalence 1985-2002 Prevalence ratio BNH:WNH Cochran Armitage test for trend < 1500 g WNH 69.0 48.7 39.3 50.7

• 0.05

BNH 48.5 57.6 53.2 53.7 1.06 0.78 1500-2400 g WNH 6.9 6.0 5.2 6.0

• 0.42

BNH 5.2 4.7 3.7 4.4 0.70 0.28 >=2500 g WNH 0.7 0.6 0.7 0.7

• 0.74

BNH 1.0 0.9 1.0 1.0 1.4* 0.89

Where Do We Go From Here? A New Look at Trends in Cerebral Palsy over Time

 Racial disparities persisted over time  No significant trends were observed by subtype, birth weight

• r gestational age overall

 BUT, different patterns did emerge for White non-Hispanic

and Black non-Hispanic children by birth weight and gestational age

Van Naarden Braun et al., 2016

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What’s Impacting Trends in Cerebral Palsy Over Time?

1985-1988 1992-1996 2000’s - onward

Schwartz et al., 1994; O’Shea et al., 1997; Shinwell et al., 2000; Stark et al., 2014

1.1 0.3 2.1 1.5 0.9 0.6 0.4 0.2

0.5 1 1.5 2 2.5 1991-1996 2000-2008 Prevalence per 10,000 Year

Postneonatal Cerebral Palsy Prevalence per 10,000 children aged 8 years, by Etiology and Year, MADDSP, 1991-2008

Infection Injury Cerebrovascular Accident Other *p<0.05

* * * * * Christensen et al., in progress

Where Do We Go From Here? A New Look at Trends in Cerebral Palsy over Time

0.3 0.9 1.3 2.3 0.7 1 0.3 0.1 0.5 1 1.5 2 2.5 White, non-Hispanic Black, non-Hispanic

Prevalence per 10,000 Race/ethnicity

Prevalence of Postneonatal Cerebral Palsy per 10,000 children aged 8 years, by etiology and race/ethnicity, MADDSP, 1991-2008

Infection Injury Cerebrovascular Accident Hypoxia/Encephalopathy

*p<0.05 * * * * Christensen et al., in progress

Where Do We Go From Here? A New Look at Trends in Cerebral Palsy over Time

Where Do We Go From Here?

More research needed on the multitude of factors that could be impacting disparities in CP prevalence

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More Than Just a Number…

CDC’s CP Surveillance Data Guide research of

• ther scientists

Help communities to coordinate service delivery Increase awareness

• f CP

Provide a more complete picture of children with CP

Summary

 A public health model which includes prevention is used in understanding

the epidemiology of CP

 CP occurs in about 1 in every 345 children in the US  Most recent CDC data report that about 50% of children with CP were

born low birthweight

 Boys and black children are more affected with CP than girls and white

children and CP is more severe in black children

 Spastic CP is the most common CP subtype and children with CP have

• ther disabilities

 CDC data show that there are racial disparities in the prevalence of

cerebral palsy and those disparities have continued over time



More studies are needed to explore how maternal education and other socioeconomic factors impact the risk of CP within racial/ethnic groups

 Findings from additional studies might inform the development of public

health intervention/prevention of CP

Acknowledgements “It Takes A Village”

• It takes many individuals at each ADDM Network site to run our

monitoring programs, including:

– Primary investigators, project coordinators, abstractors, data managers, programmers, clinician reviewers, epidemiologists and other project staff

• They are dedicated, creative, hard-working, and resourceful and

we are thankful for each and every one of them!

• A special thanks to Kim Van Naarden Braun, Daisy Christensen

and Leah Chan of CDC’s NCBDDD and Maureen Durkin of the University of Wisconsin-Madison

For more information please contact Centers for Disease Control and Prevention 1600 Clifton Road NE, Atlanta, GA 30333 Telephone, 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348 E-mail: cdcinfo@cdc.gov Web: www.cdc.gov

Thank you! You can contact me at mxy1@cdc.gov For more information, please visit www.cdc.gov/cp

Developmental Disabilities Branch National Center on Birth Defects and Developmental Disabilities