Pediatric Health Care Quality Measurement and Improvement 

Improving the current health care system so that quality care is accessible to all children, adolescents and families is a national priority. The Patient Protection and Affordable Care Act (ACA) of 2010, the Children’s Health Insurance Program Reauthorization Act (CHIPRA) of 2009, the U.S. Department of Health and Human Services Healthy People 2020 initiative, the Title V Maternal and Child Health Services Block Grant Program and the National Quality Forum are some of the national policy efforts currently underway to improve pediatric health care quality. Widespread use of valid and reliable measures to assess and continuously monitor pediatric health care quality is integral to ensuring that these endeavors effect positive and lasting changes to the U.S. health care system. The Data Resource Center for Child and Adolescent Health (DRC) supports these efforts by providing population-based child health—including data on the context of health care access, access, health status and quality of care—from the National Survey of Children’s Health (NSCH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN). Parent-reported data gathered on children age 0-17 years through these national surveys may be easily accessed through the DRC website. Consider the following advantages of using these data to measure and improve pediatric health care quality:

1. They are standardized nationally. Standardization allows for consistent measurement and reporting across states and geographic areas within states (rural, urban, metropolitan area). The measures can also be easily integrated into measurement activities at other levels (health plan, provider, community) for additional standardization across platforms. Standardization of measurement is critical to allowing comparison across states and subgroups of children for proper comparing of apples to apples.

2. They allow for stratification by important subgroups of children as required in CHIPRA and other legislation. This enables comparison across a wide array of demographic and health status subgroups of children and youth, including race/ethnicity, presence of a special health care need, household income, household language and immigration status of parents and child.

3.They are highly relevant and valid.  Many topics relevant to national health goals for children are validly reported by parents and are not possible to assess using other information systems, such as billing, administrative, clinical or medical records.  The surveys include a wide range of contextual (family, neighborhood and school characteristics) and associational variables that impossible to collect in other ways.  Click here for selected publications on the validity of parent- and self-reported data.

4. Readily available technical assistance and data use support.  An array of resources on how to use these data at the national, regional, state and local levels are also available through the DRC.

This Web page is a portal intended to help you access and use the numerous pediatric health care quality measures, data and resources available through the DRC. Many of the measures and data described directly correspond to important national policy initiatives such as CHIPRA Core Measures, Healthy People 2020, the National Strategy for Quality Improvement in Health Care Report to Congress. 

Select the Following Sections to Learn More

Using the DRC to Monitor National Quality Priorities

National Quality Forum. View the 18 measures from the NSCH and the NS-CSHCN that have been endorsed for use by the National Quality Forum (NQF). Note: all measures endorsed by the National Quality Forum are also endorsed by the National Quality Measures Clearinghouse (NQMC).

Healthy People 2020. View multiple measures from the NSCH and the NS-CSHCN that pertain to the Healthy People 2020 Objectives. Some of these measures use the national surveys as their official data source. 

2007 NSCH Child Health and System Performance Profile. The 21 measures presented in this profile show how many children in your state have special health care needs or chronic health conditions and how many receive health care services that meet criteria for system performance measures related to health insurance, access to care, preventive care and medical home.

Title V Needs Assessment. Learn about state priorities and child health data on the DRC website and access Title V needs assessment data for your state today.

Maternal and Child Health Bureau Core Outcomes for CSHCN

Outcome #1: Families are partners in decision-making at all levels
           2001 data 2005/06 data 2009/10 data  |  2009/10 Data Brief 

Outcome #2: Coordinated, ongoing, comprehensive care within a medical home
           2001 data 2005/06 data 2009/10 data 2009/10 Data Brief | Trending

Outcome #3: Adequate insurance to cover needed services
           2001 data 2005/06 data 2009/10 data 2009/10 Data Brief | Trending

Outcome #4: Early and continuous screening for special health needs
            2001 unavailable   | 2005/06 data 2009/10 data 2009/10 Data Brief 

Outcome #5: Community-based service systems are organized for ease of use
           2001 data 2005/06 data 2009/10 data 2009/10 Data Brief

Outcome #6: Youth with special health needs receive services needed for transition to adulthood, 12-17 years
           2001 data 2005/06 data 2009/10 data 2009/10 Data Brief | Trending

System of Care: CSHCN meeting all age-appropriate core-outcomes
           2001 unavailable   |  2005/06 data: Age 0-11  Age 12-17   |  2009/10 data 2009/10 Data Brief

Measurement changes across years
            2005/06 to 2009/10   |  2001 to 2005/06 

2009/10 NS-CSHCN Core Outcomes State Ranking Maps. Compare each individual state's performance to the national average using these statistically tested US data maps that provide a visual display of the nation

Data on Health Care Quality and System Performance

Medical Home Data Portal. The Data Resource Center—funded by the Maternal and Child Health Bureau, Health Resources and Services Administration—partnered with the American Academy of Pediatrics to create The Medical Home Data Portal to allow state and family leaders quick access to data on how children and youth in each state experience receiving care within a medical home.

  • Access and compare medical home state data
  • Search more medical home data
  • Learn about medical home
  • Read about medical home measurement in states and practices
  • View examples of medical home policy and data in action!
  • Learn about medical home measurement for families
  • Link to other medical home resources

2007 NSCH Child Health and System Performance Profile. The 21 measures presented in this profile show how many children in your state have special health care needs or chronic health conditions and how many receive health care services that meet criteria for system performance measures related to health insurance, access to care, preventive care and medical home.

Data and figures from the 2009/10 NS-CSHCN exploring System Performance for CSHCN and ASD. The following figures from a recently published book chapter utilize data from the 2009/10 NS-CSHCN to examine how families and children with special health care needs and Autism Spectrum Disorder experience the system of care.

Quality Improvement Data Briefs

Using Data to Build Partnerships for Improving Children's Health and Health CareThree exercises are provided to walk you through how to use data to inform, motivate and engage stakeholders in improving services, policies, or programs for children, youth and families. 

Quality Improvement Partnerships. See how the DRC can help with quality improvement processes, such as understanding your population, assessing system performance, examining improvement opportunities, selecting priorities, setting targets, identifying promising improvement models and monitoring progress.

Select Publications and Presentations

Assessing and Promoting Access to Quality Health Care
Healthy Kids Steering Committee, January 2012

Maximizing Quality Measurement and Improvement of Frameworks and Leveraging Existing Data and Methods
Tri-State Children’s Health Improvement Consortium Presentation, September 2011

National and State Prevalence of Standardized Developmental Screening and Links to Early Intervention and Mental Health Services Access
Academy Health Annual Conference, June 13, 2011

Health Care Needs of Children With Down Syndrome and Impact of Health System Performance on Children and Their Families.
Developmental & Behavioral Pediatrics, January 2012

Rates of Parent-Centered Developmental Screening: Disparities and Links to Services Access
Pediatrics, June 2011

A National and state profile of leading health problems and health care quality for US children: key insurance disparities and across-state variations
Academic Pediatrics, May/June 2011

Additional Pediatric Quality Measures, Data and Resources

Select Publications on Parent- and Self-Reported Data

Patients providing the answers: narrowing the gap in data quality for emergency care.
Quality and Safe Health Care, May 2010

The value of patient self-report for disease surveillance.
J Am Med Inform Assoc., Nov-Dec 2007

Parents as partners in obtaining the medication history.
J Am Med Inform Assoc, May-June 2005

Patients as experts: a collaborative performance support system.
Proc AMIA Symp, 1999.

Parents as direct contributors to the medical record: validation of their electronic input.
Ann Emerg Med., April 2000.

Data quality and the electronic medical record: a role for direct parental data entry.
Proc AMIA Symp, 1999.