Stephen J. Blumberg, PhD Christina D. Bethell, PhD, MBA Paul W. Newacheck, DrPH The CSHCN Screener Key Findings, Methods Issues, and its Relationship with Well-Being Centers for Disease Control and Prevention National Center for Health Statistics 27 July rd Conference of the International Society for Child Indicators University of York

Children with Special Health Care Needs The CSHCN Screener Key Findings, Methods Issues, and its Relationship with Well-Being Centers for Disease Control and Prevention National Center for Health Statistics 27 July rd Conference of the International Society for Child Indicators University of York

U.S. National Survey of Children’s Health (NSCH) Dates: 2003, 2007, 2011 Conducted by: National Center for Health Statistics Purpose: Produce estimates on the health and well- being of children, families, & their communities Sample: Independent random-digit-dial (RDD) samples for all 50 states & the District of Columbia (DC) Random selection: One child 0 – 17 years of age selected from each household with children to be the subject of the interview Goal: Complete interviews for over 91,000 children nationally (goal: 1,700 completed per state & DC) Respondent: Parent or guardian

NSCH Sponsor Has primary responsibility for promoting and improving the health of U.S. women, children and families. Provides leadership to improve the physical and mental health, safety and well-being of the MCH population Administers block grants to state MCH agencies

Title V MCH Block Grants The US federal government budgets more than $1 billion annually for MCH services In order to be entitled to payments, states must use at least 30 percent of such payment amounts for services for children with special health care needs (CSHCN) Why CSHCN? – CSHCN account for 42% of total medical care costs (excluding dental costs)

Definition of “Children with Special Health Care Needs” “Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” (McPherson, Arango, Fox, et al., 1998)

Home Environment Indicators CSHCNNon-CSHCN 4+ family meals together per week76.0%77.1% No tobacco smoke in home89.9%93.0% Watch less than 2 hours of TV per day45.7%49.4% No television in bedroom (age 6-17)45.6%51.1% Parent met all/most friends (6-17)79.7%80.9% Usually/always does all homework (6-17)77.4%88.9% Ever breastfed (age 0-5)68.3%76.5% Told stories or sung to every day (0-5)65.4%58.2% All of the above22.7%30.1% Data Source: NSCH, 2007

Neighborhood and School Indicators CSHCNNon-CSHCN Usually/always engaged in school69.5%83.7% Never repeated a grade81.5%91.8% Participate in after school activities77.2%81.7% Usually/always safe at school88.8%89.8% Usually/always safe in community84.4%86.4% Live in supportive neighborhood80.4%83.9% Safe and supportive48.6%51.8% Data Source: NSCH, 2007

Indicators Related to Social Behaviors, Activities, and Family CSHCNNon-CSHCN Age 6-17: Has problematic social behaviors17.9%6.2% Lacks consistent positive social skills12.3%4.6% No vigorous physical activity13.2%9.5% Does not get adequate sleep daily41.1%34.1% All ages: Mother’s health less than very good52.2%41.0% Father’s health less than very good41.8%36.3% Does not share ideas or talk to parents about things that matter 37.4%28.1% Parents usually/always stressed20.0%7.9% Data Source: NSCH, 2007

Definition of “Children with Special Health Care Needs” “Children with special health care needs are those who have... a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” (McPherson, Arango, Fox, et al., 1998)

Special Health Needs Continuum Defining Special Health Care Needs

What is the CSHCN Screener? A non-condition-specific, consequences-based method for identifying CSHCN, targeting Categories B and C Designed in by the Child and Adolescent Health Measurement Initiative (now at OHSU) Developed through a national process involving physicians, state leaders, families, methods experts, and policymakers Tested with parents of 36,000+ children during development phase Several versions tested, leading to final version, which takes 1 minute for parents to complete Data for more than 1 million children analyzed since 2000

The CSHCN Screener Asks about five “common” consequences 1. Limitation of activities 2. Need for or use of prescription medication 3. Need for or use of specialized therapies 4. Above routine need or use of medical, mental health, or education services 5. Need for or receipt of treatment or counseling for an emotional, behavioral, or developmental problem (Bethell, Read, Stein, Blumberg, Wells, & Newacheck, 2002)

The CSHCN Screener Two follow-up questions 1. Is this due to a medical, behavioral, or other health condition? 2. Is this a condition that has lasted or is expected to last 12 months or longer? (Bethell, Read, Stein, Blumberg, Wells, & Newacheck, 2002)

Key Features of CSHCN Screener Based on parent report – Most amenable to uniform data collection Short (1 minute to complete) – Costs per item are usually high in government surveys – Longer surveys threaten participation rates Based on consequences rather than conditions – Condition checklists tend to be very long – Condition checklists are hard to analyze and interpret – Focus on consequences helps capture children with conditions not yet diagnosed or poorly recalled

“Triangulate” to Validate

Cross-Method Comparisons Over 93% of identified CSHCN had at least one specific chronic health condition or problem, and most had two or more Over 98% of identified CSHCN had some type of functional difficulty, as defined by the International Classification of Functioning (ICF)

Who is Identified by the Screener? All or nearly all children with complex health conditions such as: – Cerebral palsy; cystic fibrosis; muscular dystrophy – Rare metabolic or genetic disorders – Mental retardation; developmental delay; autism – Sickle cell anemia; Down Syndrome; diabetes Only those children whose asthma, ADHD, allergies, or other conditions result in: – Elevated service use, – Long-term use of prescription medicine, or – Limitations in functioning

Who is Missed by the Screener? The CSHCN Screener is likely to miss children who have only: – Food or environmental allergies – Special diet (e.g., lactose intolerance) – Vision problems (e.g., amblyopia, colorblindness) – Developmental delays early in life Some parents of children with speech problems, learning disabilities, developmental delay, and conduct problems report consequences but then say they are not due to “health conditions”

Over-Identification? Should ongoing need for only prescription medication be considered a special need? Should children with only asthma or allergies be considered CSHCN? CSHCN with only Rx needs CSHCN with only asthma or allergies Non-CSHCN Mean # of doctor visits in past year % with 2+ hospital emergency visits Data Source: NS-CSHCN,

Survey-Based Uses of the CSHCN Screener in the U.S. National Survey of CSHCN (NS-CSHCN) National Survey of Children’s Health (NSCH) Medical Expenditure Panel Survey (MEPS) Consumer Assessment of Health Plans Survey (CAHPS)

Prevalence Differences by Survey Data Sources: see legend NS-CSHCN 2001 NS-CSHCN NSCH 2003NSCH 2007 MEPS 2001MEPS 2004

Why Might Prevalence Rates Differ Across Surveys? Dates of data collection Method of data collection and estimation – Mode – Sampling frame – Interviewers – Weighting methods Sample size and sampling error Method of identification – Respondent – Recall period – Question wording – Question ordering – Question context and introduction

Percent of CSHCN with Each Consequence Type, by Survey Data Sources: see legend

Demographic Differences Data Source: NS-CSHCN,

Prevalence by Race/Ethnicity and Primary Language at Home Data Source: NS-CSHCN,

Prevalence by Race/Ethnicity and Primary Language at Home Data Source: NS-CSHCN,

Prescription Medication Orders Filled, by Ethnicity and Language of Interview Data Source: MEPS, 2004 Percent of Children with Any Prescription Medication Orders Percent of Children with Any Psychiatric Medication Orders Thanks to Byron A. Foster, Oregon Health and Science University.

The CSHCN Screener Reliably identifies children requiring on-going medical and other health-related services Can be used to stratify children into meaningful subgroups related to condition complexity Is sensitive to health care practice patterns (such as those related to cultural differences) Yields results that can be influenced by differences in survey administration Provides a key health indicator that is related to the home environment and the well-being of children and their families