Step 2: Identify Existing Data and Obtain Data Results
Activity 2: Identify existing data sources using the M&M data matrix.
As an additional resource for this activity the M&M staff have developed a list of national data sources for CSHCN outcomes available for download as a Word Document (15K).
Assembling the Data Matrix
At the monthly meeting, the M&M Data Subcommittee develops procedures to identify data sources and determine which Subcommittee member will commit to bring data results to the next month's meeting. A data matrix table is the primary tool used by the State Leadership Team to collect information about these sources. As more sources are entered, the data matrix becomes a repository of specific information about each data source, the target population for the data, how frequently the data are collected, and the format in which the data are available for analysis (e.g., paper or electronic files).
A sample data matrix to use in collecting information about data sources is available to download as a Word Document (10K).
| Indicators for Outcome #3: Families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need. | Data source. Identify specific wording/item number. | Target Population | Frequency of Data Collection | Data Results |
|---|---|---|---|---|
1. % of CSHCN with insurance that covers costs of needed services, including:
|
Title V NPM #11: % CSHCN in the State CSHCN Program with a source of insurance for primary and specialty care. Title V NPM #12: % of children without health insurance. |
Title V NPM #11: Combined data for CSHNP, PDSP, Healthy Start, considered Health Status Survey data. Title V NPM #12 Data from State Health Survey (population -based telephone survey) from the Office of Health Status Monitoring. |
Annual Annual |
95-96% have insurance
|
States should find that through this process they are able to identify new data sources including, but not limited to the Consumer Assessment of Health Plans (CAHPS) data, school system transition data, Head Start data regarding screening and medical home, and survey data from the Developmental Disabilities program. States can also gather useful data on many of the measures by focusing on a number of national and state survey instruments. These surveys can be particularly helpful in measuring the outcomes for the broader population of children with special health care needs, going beyond those enrolled in state CSHCN programs. The following list highlights surveys that either directly provide state-specific data pertinent to the core outcomes or that have potential to guide the development of other measurement strategies.
Survey Tools for Monitoring CSHCN Outcomes
The National Survey of CSHCN: The Maternal and Child Health Bureau (MCHB), in collaboration with the National Center for Health Statistics at the Centers for Disease Control and Prevention (CDC), has sponsored the National Survey of CSHCN. The survey is being incorporated into the State and Local Area Integrated Telephone Survey (SLAITS), providing states with a prevalence rate for the broadly defined population of children with special health care needs. The survey provides states with valuable information related to many CSHCN core measures and indicators. Specifically, the survey contains questions pertaining to several of the core measures including medical home, adequacy of insurance, and access to services, as well as family satisfaction and participation in decision making. MCHB plans to repeat this survey every four years with 2004 being the most recent survey. Further information about the survey and results are available at http://www.cdc.gov/nchs/about/major/slaits/cshcn.htm
National Health Interview Survey-Disabilities (NHIS-D): This telephone survey is conducted by the National Center for Health Statistics (NCHS), providing information regarding a randomized sample of children and adults with developmental disabilities, specific health conditions, behavior problems, sensory loss, or physical disabilities. The survey contains questions related to medical home, transition, screening, and access to community-based services. Although data are provided at a regional level, some states have "purchased" additional data collection to acquire state-level data. Questions from the surveys can be used by states as a model in the development of their own surveys. Use of the same questions provides an opportunity for comparing state results to those at a national or regional level.
Medical Expenditure Panel Survey (MEPS): This survey uses a nationally-representative subsample drawn from households that participated in the prior year's National Health Interview Survey. MEPS provides information related to medical home, adequacy of insurance, and access to services. MEPS also provides children's health status information, such as prevalence of disabilities and time missed from work to care for sick children. MEPS targets persons with mental retardation, developmental disabilities, attention deficit disorder/hyperactivity disorder, specific physical and mental health, autism, hearing, vision, mobility, prescription medication, and behavior problems.
Pregnancy Risk Assessment Monitoring System (PRAMS): This mailed survey was developed by the CDC and Prevention for use by individual states. PRAMS is administered annually to a sample of women who were pregnant during that calendar year. The survey is designed to obtain information that could be used to identify the percentage of children who may be at risk for developing special health care needs, such as those whose mothers used cigarettes or alcohol. Additionally, this survey provides data related to receipt of early and continuous screening, receipt of prenatal care, insurance coverage for the child, and source of well-child checks.
Behavioral Risk Factor Surveillance System (BRFSS): This survey, conducted through the CDC, provides annual state-level data based on a randomized sample of the general adult population. Information is gathered regarding usual source of health care, insurance coverage, and employment status; this can be particularly useful in measuring indicators related to successful transition to adult health care. Additionally, a number of states have added questions to this survey to obtain data on particular health conditions (such as asthma, diabetes, and depression) as Use of National and State-wide Surveys to Measure and Monitor CSHCN Core measures well as obtain more comprehensive information on health care costs and barriers. Potentially, states could use this survey to identify a broader population of adults with special health care needs and add questions regarding the Healthy People 2010 core measures.
Consumer Assessment of Health Plans Child Survey (CAHPS): This tool is part of Health Plan Employer Data Information Set (HEDIS) and collects information on consumer satisfaction with health services as well as barriers to health care, such as getting appointments in a timely manner and communicating with health care providers. Findings are used to inform consumers about the quality of health plans to help them in selecting a health plan to meet their needs. The survey can be administered either via mail or telephone. Many state Medicaid programs gather CAHPS data, with data collection frequency can be determined by the survey purchaser. An exciting new addition to the CAHPS Child version is the incorporation of questions to identify the broader population of children with special health care needs, providing states with a valuable data source related to the CSHCN performance measures.
State-Designed Broad-based Surveys: Recently, Utah and Arizona each conducted statewide surveys to gain more comprehensive information related to the six CSHCN performance measures as well as state-specific priorities. Conducting their own surveys provided Utah and Arizona with the opportunity to gather data on a larger number of children with special health care needs that fit the broad CSHCN definition. Their surveys also offered the opportunity to include questions about screening and transition to adulthood, complementing the information they will be receiving through the SLAITS National CSHCN Survey.