3/9/2018 .. A Population Perspective on Cerebral Palsy: Findings from Current Surveillance and Research I have nothing to disclose. Marshalyn Yeargin-Allsopp, MD National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention 17 th Annual UCSF Developmental Disabilities Conference March 9, 2018 Developmental Disabilities Branch National Center on Birth Defects and Developmental Disabilities Presentation Overview • Definition of public health surveillance PUBLIC HEALTH MODEL FOR • Overview of CDC cerebral palsy (CP) surveillance CEREBRAL PALSY • 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? 1
3/9/2018 What is Public Health Surveillance? Public Health Model • The ongoing, systematic collection, analysis, and interpretation of data (e.g., Epidemiologic regarding agent/hazard, risk Surveillance Research factor, exposure, health event) essential to the planning, implementation, and evaluation Partnerships of public health practice, closely integrated with the timely dissemination of these data to those responsible for prevention Prevention and control. Teutsch SM, Churchill RE. Principles and practice of public health surveillance: 2nd ed. Oxford University Press. 2000. The Impetus for Cerebral Palsy Surveillance at CDC 1979: How Many Children Have a Developmental Disability? 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 2
3/9/2018 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 others, and if rates are changing over time. CDC’s Cerebral Palsy Surveillance Method Ongoing, Population-Based Surveillance Multisource, records-based surveillance methodology Strengths Limitations Trained abstractors review and abstract selected record s at multiple data sources in • Active record review • More labor intensive and the community that educate, diagnose, treat, • Multiple community sources costly to operate than passive and provide services to children with systems • Does not rely on previously developmental disabilities. • Timeliness documented CP diagnoses • May underestimate children • Can examine CP by subtype, with mild CP who have not race/ethnicity & co-occurring come to the attention of DDs service providers early in • Objective, reliable measures childhood Trained clinicians review abstracted • Ability to link to other • Dependent on the information from all data sources for a given datasets availability/quality of records child. These trained clinicians then • Minimal burden determine if the child meets the case status • Ongoing program to monitor for CP trends • Extensive QC measures 3
3/9/2018 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 occurred in the developing brain.* – The motor disorders of CP are often accompanied by disturbances of SURVEILLANCE FINDINGS: THE BASICS 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 Frequency of Cerebral Palsy ADDM Network, 2006-2010 4 Prevalence per 1,000 children 3.5 3 aged 8 years SURVEILLANCE FINDINGS: 2.5 2 CHARACTERISTICS OF THE POPULATION 1.5 1 0.5 0 2006 2007 2008 2009 2010 Year Durkin et al., 2016 4
3/9/2018 Percentage of Low Birth Weight children Cerebral Palsy More Common among Boys with CP ADDM Network, 2006-2010 ADDM Network, 2006-2010 60 4 3.5 Percentage of children with CP 50 3 born at low birth weight Prevalence per 1,000 2.5 40 2 1.5 30 1 0.5 20 0 2006 2008 2010 10 Year 0 Boys Girls 2006 2008 2010 Year Durkin et al., 2016 Durkin et al., 2016 Many Children with Cerebral Palsy Have Majority of Children Have Spastic Cerebral Palsy Co-Occurring Epilepsy and/or Autism • Non-Spastic includes dyskinetic, • 41% with co-occurring epilepsy Other, ataxic, hypotonic, and dyskinetic- 14.4% ataxic • 6.9% with co-occurring autism Non-Spastic, 8.2% – Overall prevalence of autism among US children is about 1-2% → • Other includes spastic-ataxic, Prevalence of autism among children with CP seems to be higher than Spastic, spastic-dyskinetic, and cerebral among their peers without CP 77.4% palsy not otherwise specified Durkin et al., 2016 Christensen et al., 2014 5
3/9/2018 Over Half of Children with Cerebral Palsy Walk Independently • Walking ability data available on Limited or no 74.7% of children identified walking, SURVEILLANCE FINDINGS: 30.5% with CP by ADDM CP Network Walks DISPARITIES IN CEREBRAL PALSY independently, 58.2% Uses hand-held mobility device, 11.3% Christensen et al., 2014 Role of Socioeconomic Status and Perinatal Factors in Racial Disparities Cerebral Palsy More Common among Black Children than White Children, ADDM Network 2006-2010 Tested three hypotheses: 4 3.5 1. Risk of CP declines with increasing SES (maternal education) 3 Frequency per 1,000 2.5 2. Observed racial/ethnic disparity in CP risk is due to confounding or is mediated by racial disparities in SES 2 1.5 3. Perinatal factors (PTB & SGA) mediate the association between 1 race as well as maternal education and CP risk 0.5 0 2006 2008 2010 Year Non-Hispanic White Non-Hispanic Black Durkin et al., 2016 Durkin et al., 2015 6
3/9/2018 Role of Socioeconomic Status and Perinatal Factors in Role of Socioeconomic Status and Perinatal Factors in Racial Disparities: Hypothesis 1 Racial Disparities: Hypothesis 2 Race/Ethnicity Spastic CP Spastic CP Category Risk Ratio Odds Ratio SES Category All CP Spastic CP Non-Spastic and (after adjusting for Risk Ratio Risk Ratio Unspecified CP Risk SES*) Ratio White Reference Reference Low 1.65 1.85 0.99 Black 1.52 1.35 Middle 1.34 1.43 1.10 Hispanic 0.89 0.72 High Reference Reference Reference Other/Undetermined 1.08 1.07 *SES in this analysis is based on maternal educational attainment Durkin et al., 2015 Durkin et al., 2015 Role of Socioeconomic Status and Perinatal Role of Socioeconomic Status and Perinatal Factors in Factors in Racial/Ethnic Disparities Racial Disparities: Hypothesis 3 Tested three hypotheses and found: Race/Ethnicity All CP Spastic CP Non-Spastic and Category Odds Ratio Odds Ratio Unspecified CP 1. Risk of CP declines with increasing SES Odds Ratio White Reference Reference Reference 2. Observed racial/ethnic disparity in CP risk is due to confounding Black 0.87 0.92 0.68 or is mediated by racial/ethnic disparities in SES Hispanic 0.75 0.77 0.71 3. Perinatal factors (PTB & SGA) mediate the association between Odds ratios for each category are adjusted for: race as well as maternal education and CP risk SES, sex, maternal age, gestational age at birth, small for gestational age, documented receipt of prenatal care, and multiple birth Durkin et al., 2015 Durkin et al., 2015 7
3/9/2018 Racial Disparities in Severity of Role of Socioeconomic Status and Perinatal Factors in Racial Disparities Gross Motor Function Gross Motor Limitations Black-White Prevalence Further research needed: Odds Ratio Causal mechanisms underlying associations between low SES and GMFCS Level I & II 0.9 spastic CP Effects of other components of SES: income, occupation, insurance coverage, access to prenatal care GMFCS Level III 1.6 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 GMFCS Level IV & V 1.7 to the level of risk experience by offspring of college-educated mothers How might we achieve this goal? Durkin et al., 2015 Maenner et al., 2012 Racial Disparities in Severity of Gross Motor Function Potential mechanisms? WHERE DO WE GO FROM HERE? Racial differences in risk factors Access to interventions Under-identification of mild CP in black children Maenner et al., 2012 8
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