Identifying Children and Adults with Special Health Care Needs

Children with Special Health Care Needs (CSHCN) are a subpopulation of children that have elevated health care utilization, expenditures, and health consequences. The Maternal and Child Health Bureau (MCHB) and Division for CSHCN aim to develop, facilitate, and monitor systems of care for all children and CSHCN. Under federal law, states are required to monitor, report, and create programs that support quality of care for CSHCN. Under health care reform, states are also further charged to identify children with complex needs and high utilization to more effectively target resources toward programs and practices that meet the needs of this especially vulnerable group. This Web Portal is therefore intended to provide an array of resources that various stakeholders may use to define and identify both children and adults with special health care needs including those with the most complex needs. 

Approaches to Identifying Children and Adults with Special Health Care Needs: A Resource Manual for State Medicaid Agencies and Managed Care Organizations. This comprehensive report focuses on frameworks for identifying individuals with chronic health care needs, including purpose, target, definition, capacity and attributes. A comparison of tools is provided, including the CSHCN and ASHCN Screeners and Clinical Risk Groups (CRGs).

History of Identifying Children with Special Health Care Needs

Background and Specifications of the CSHCN Screener. The CSHCN Screener was submitted to CAHPS/AHRQ with a full description of the existing research, screener development, cognitive testing, results of pilot testing, and administration of the CSHCN Screener.

Comparison of Case Finding Questions by Conceptual Domains. In the development of the CSHCN Screener, examination of existing tools and definitions (QuICCC, MCHB, RCCIC, CAHPS/PEDS) was conducted to determine relevancy and potential inclusion. This document compares each tools/definitions approach to identifying an existing condition, duration of condition, and consequences and impact on child.

Memo to NCQA Technical Advisory Group: Recommended Measure for Children with Chronic Conditions. This memo provides background information on the gaps within the HEDIS system for children with chronic health problems. This measurement gap fueled the development and implementation of the CSHCN Module.

Pediatric Living with Illness Screener and Supplemental Survey Module. The NCQA Technical Advisory Group developed this document to outline the measure for inclusion within the HEDIS system for children with chronic health problems.

• NCQA Technical Advisory Group Analyses. This document compares the CSHCN Screener (formerly known as the Living with Illness Measure) to diagnosis-driven methodologies. 

CAHPS Child Survey: A method for modifying the CAHPS 2.5H Child Survey to measure experience of care for children with ongoing health conditions. This report outlines all materials required for implementation of the CSHCN Module in CAHPS Surveys.

NCQA Endorsement of Children with Ongoing Health Needs (CSHCN) Module. This press release explains the National Committee on Quality Assurance view of the CSHCN Module. This includes HMOs focus on Quality of Children's Health Care Quality and the CSHCN Module role in quality measurement.

Sampling Approaches for Implementing the CSHCN Module. This report provides detailed information regarding sampling approaches to identify special health care needs, as well as the specific issues and key findings relevant to the selection of a casefinding and sampling approach.

MEPS Longitudinal Comparison of CSHCN Status & Disability over Time. This set of analyses was conducted on MEPS Panel 8 sample between 2003 and 2004. While rates of CSHCN and functioning remained constant over time, there were several changes in the individuals status over time.

Overview of CSHCN Screener. This document provides a basic overview, including background, the screening instrument and scoring guidelines.

• Identifying children with special health care needs: development and evaluation of a short screening instrument. Ambulatory Pediatrics, 2002.
• Comparison of the Children With Special Health Care Needs Screener to the Questionnaire for Identifying Children With Chronic Conditions—Revised. Ambulatory Pediatrics, 2002.
• Identifying and Classifying Children with Chronic Conditions Using Administrative Data With the Clinical Risk Group Classification System. Ambulatory Pediatrics, 2002.

Identifying Youth with Special Health Care Needs

While the CSHCN Screener was designed as a parent-report tool for children age 0-17 years, a youth-report version of the tool was developed for adolescents age 13-17 years. 

A Portrait of Adolescents in America, 2001. This chartbook, produced by the Robert Wood Johnson Foundation and Foundation for Accountability, provides a comprehensive analysis of adolescent health and health behavior in the United States, including the youth-report CSHCN Screener.

Identifying Adults with Special Health Care Needs

• Technical Summary of the ASHCN Screener. This document provides information on the background, testing, and history of the ASHCN Screener.
• Comparing CSHCN/ASHCN Screeners and Clinical Risk Groups. This report analyzes the different screening methodologies, such as CRGs and the CSHCN/ASHCN Screeners for identifying individuals with elevated health needs, utilization and consequences.