Measures of Child Well-Being from a Decentralized Statistical System:

A View From the U.S. National Center for Health

StatisticsStephen J. Blumberg, Ph.D.

Senior Scientist, Division of Health Interview StatisticsNational Center for Health Statistics

Centers for Disease Control and PreventionU.S. Department of Health and Human Services

National Center for Health StatisticsDivision of Health Interview Statistics

U.S. Principal Statistics Agencies Bureau of Economic Analysis Bureau of Justice Statistics Bureau of Labor Statistics Bureau of Transportation Statistics Census Bureau Economic Research Service, Department of Agriculture Energy Information Administration Environmental Protection Agency Internal Revenue Service, Statistics of Income National Agricultural Statistics Service National Center for Education Statistics National Center for Health Statistics National Science Foundation, Science Resources Statistics Social Security Administration, Office of Policy

Statutory Missionof the National Center for Health

Statistics Shall collect statistics on

Extent and nature of illness and disability of the US population

Impact of illness and disability on the economy of the US Impact of illness and disability on well-being of US

population Environmental, social, and other health hazards Determinants of health Health resources, including supply of services Utilization of health care Health care costs and financing Family formation, growth, and dissolution

Operating Divisions of theDepartment of Health and Human

Services Administration for Children and Families Agency for Healthcare Research and Quality Administration on Aging Agency for Toxic Substances and Disease Registry Centers for Disease Control and Prevention Centers for Medicare and Medicaid Services Food and Drug Administration Health Resources and Services Administration Indian Health Service National Institutes of Health Substance Abuse and Mental Health Services

Administration

Major CDC Surveys and SystemsCollecting Data About Children

From National Center for Health Statistics National Health Interview Survey National Health and Nutrition Examination Survey National Hospital Ambulatory Medical Care Survey State and Local Area Integrated Telephone Survey National Vital Statistics Systems

• National Linked Files of Live Births and Infant Deaths From other CDC centers

Youth Risk Behavior Surveillance System Pregnancy Risk Assessment Monitoring System National Immunization Survey

Operating Divisions of theDepartment of Health and Human

Services Administration for Children and Families Agency for Healthcare Research and Quality Administration on Aging Agency for Toxic Substances and Disease Registry Centers for Disease Control and Prevention Centers for Medicare and Medicaid Services Food and Drug Administration Health Resources and Services Administration Indian Health Service National Institutes of Health Substance Abuse and Mental Health Services

Administration

Maternal and Child Health Bureau,Health Resources and Services

Administration

Has funded and provided direction for: National Survey of Children’s Health National Survey of Children with Special Health Care

Needs Both surveys are administered and

conducted by the National Center for Health Statistics

National Survey of Children’s Health Dates: 2003, 2007, 2011 Purpose: National & state estimates on the

health and well-being of children, families, & their communities

Sample: Independent random-digit-dial (RDD) samples for all 50 states & District of Columbia

Random selection: One child 0 – 17 years selected from each household with children

Goal: Complete interviews for over 91,000 children nationally (1,700+ completed per state & DC)

Respondent: Parent or guardian Languages: English, Spanish, & 4 Asian

languages

Key Indicators from NSCH Health status

General health status Oral health status Injuries (past year) Breastfeeding (ever) Risk of developmental or behavioral

problems Positive social skills Missed school days

Health care Current health insurance coverage Insurance coverage consistency Preventive health care (past year) Preventive dental care (past year) Developmental screening (ever) Receipt of needed mental health

care (past year) Medical home

School and activities

School engagement Repeated a grade (ever) Participation in activities outside

school Screen time

Child’s family Reading, singing, and telling stories

to young children Religious service attendance Mother’s and father’s health status Smoking in child’s household Need for emergency child care

arrangements Child’s neighborhood

Neighborhood amenities Condition of housing in neighborhood Supportive neighborhoods, social

cohesiveness Safety of child in neighborhood

National Survey of Children with Special Health Care

Needs Dates: 2001, 2005-2006, 2009-2010 Purpose: To produce national and state-

based estimates of the prevalence and impact of special health care needs among children 0-17 years of age

Sample: Independent random-digit-dial (RDD) samples for all 50 states & District of Columbia

Screening: All children 0 – 17 years in about 200,000 households screened for special needs

Goal: Completed interviews for approximately 750 children with special health care needs per state

Respondent: Parent or guardian Languages: English, Spanish, & 4 Asian

languages

Definition of CSHCN 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.

The CSHCN Screener Five consequences

1. Limitation of activities2. Need for or use of prescription medication3. Need for or use of specialized therapies4. Above routine need or use of medical, mental

health, or education services5. Need for or receipt of treatment or counseling for

an emotional, behavioral, or developmental problem

Two follow-up questions1. Due to a medical, behavioral, or other health

condition2. Condition has lasted or is expected to last 12+

months

Key Indicators for CSHCN Child health

Functional difficulties, impact on activities, school absences

Health insurance coverage Uninsurance (past year, point in time), adequacy

Access to care Unmet needs for care or family support, problems

with referrals, no usual place for care, no personal doctor/nurse

Family-centered care and medical home Impact on family

Out-of-pocket expenses, family financial problems, time spent on care, impact on employment for family members

SLAITS: The State and Local Area Integrated Telephone Survey

A series of agency-sponsored surveys National Survey of Children with Special Health

Care Needs National Survey of Children’s Health National Survey of Adoptive Parents National Survey of Early Childhood Health National Asthma Survey Survey of Pathways to Diagnosis and Services

Statistics CycleDefining data needs

and analytic approaches

Specifying necessary data

attributes

Identifying appropriate data

sources

Collecting, aggregating, and compiling data

Analyzing statistics

Translating statistics for users

Evaluating extent to which needs are

met

Statistics CycleDefining data needs

and analytic approaches

Specifying necessary data

attributes

Identifying appropriate data

sources

Collecting, aggregating, and compiling data

Analyzing statistics

Translating statistics for users

Evaluating extent to which needs are

met

Why Don’t Statistical Agencies Define Needs?

Most important assets for a statistical agency:

CREDIBILITY AND OBJECTIVITY

Statistics CycleDefining data needs

and analytic approaches

Specifying necessary data

attributes

Identifying appropriate data

sources

Collecting, aggregating, and compiling data

Analyzing statistics

Translating statistics for users

Evaluating extent to which needs are

met

Statistics CycleDefining data needs

and analytic approaches

Specifying necessary data

attributes

Identifying appropriate data

sources

Collecting, aggregating, and compiling data

Analyzing statistics

Translating statistics for users

Evaluating extent to which needs are

met

Survey-Based Data Sources forHealth Insurance Coverage Estimates

National Health Interview Survey (NCHS) National Survey of Children’s Health (NCHS

and MCHB) Current Population Survey (Bureau of Labor

Statistics) American Community Survey (Census

Bureau) Survey of Income and Program Participation

(Census Bureau)

Statistics CycleDefining data needs

and analytic approaches

Specifying necessary data

attributes

Identifying appropriate data

sources

Collecting, aggregating, and compiling data

Analyzing statistics

Translating statistics for users

Evaluating extent to which needs are

met

Statistics CycleDefining data needs

and analytic approaches

Specifying necessary data

attributes

Identifying appropriate data

sources

Collecting, aggregating, and compiling data

Analyzing statistics

Translating statistics for users

Evaluating extent to which needs are

met

Statistics CycleDefining data needs

and analytic approaches

Specifying necessary data

attributes

Identifying appropriate data

sources

Collecting, aggregating, and compiling data

Analyzing statistics

Translating statistics for users

Evaluating extent to which needs are

met

MCHB Chartbooks

Data Resource Centerfor Child and Adolescent Health

http://www.childhealthdata.org

A project of the Child and Adolescent Health Measurement Initiative (CAHMI) at Oregon Health and Science University. Supported by MCHB.

Statistics CycleDefining data needs

and analytic approaches

Specifying necessary data

attributes

Identifying appropriate data

sources

Collecting, aggregating, and compiling data

Analyzing statistics

Translating statistics for users

Evaluating extent to which needs are

met

Statistics CycleDefining data needs

and analytic approaches

Specifying necessary data

attributes

Identifying appropriate data

sources

Collecting, aggregating, and compiling data

Analyzing statistics

Translating statistics for users

Evaluating extent to which needs are

met

Integrating Function