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Children with Special Healthcare Needs

Measuring & Monitoring Quality


Ann Page, R.N., M.P.H., Technical Director, Division of Quality System Management, Center for Medical and State Operations, Health Care Financing Administration (HCFA), Baltimore, MD.

Denise Dougherty, Ph.D., Coordinator for Child Health Activities, Agency for Healthcare Research and Quality (AHRQ), Rockville, MD.

Susan Epstein, M.S.W., New England Serve, Boston, MA.

One critical feature of the systems of care for CSHCN is the potential for them to generate measures of the quality of care provided. In this session, Ann Page from the Health Care Financing Administration (HCFA), Denise Dougherty from the Agency for Healthcare Research and Quality (AHRQ), and Susan Epstein from New England Serve spoke about issues and approaches for measuring quality of care for children with special health care needs (CSHCN).

Ms. Page spoke of the role that HCFA plays in ensuring that the needs of individuals with special healthcare needs are adequately met. Currently, HCFA is working on a collaborative study and a Report to Congress on children with special healthcare needs and other chronically ill populations. This study will analyze:

  • Quality monitoring of CSHCN programs and effective payment mechanisms.
  • Effective identification methods for CSHCN.
  • The evidence base for the development of partnerships for improved service for CSHCN.
  • Access to experienced providers for CSHCN.
  • The various service needs for CSHCN, including Medicaid flexibility, beneficiary assessment, medical necessity determinations, and technology assessments.

Denise Dougherty of AHRQ talked about the new developments in quality measurement and the increasing attention that is being focused on quality improvement within the Agency as well as the field of CSHCN.

Dr. Dougherty discussed several key issues, including:

  • The purposes of measurement to identify quality problems, to ensure choice for patients, and to look for methods of improvement.
  • The lack of national standardized measures designed for the population of CSHCN.
  • The importance of looking at information from an evidence-based perspective and whether or not the outcomes that are being measured can be attributed to healthcare delivery and services.
  • The newest quality measurement tool for the population with special healthcare needs—the Living With Illness Measurement Tool.

Finally, Susan Epstein, the Director of New England Serve in Boston, Massachusetts, discussed a specific quality assessment tool developed by her organization that focuses the responsibility for assessing and improving the quality of care on all stakeholders (i.e., consumers, providers, administrators, purchasers) involved in the process.

The members of New England Serve not only have found this tool to be quite useful, but they have learned valuable lessons in the process of its development and usage, including the challenges and difficulties involved with the identification of CSHCN, the power of the comparison data between and among stakeholders, the willingness of families and providers to respond to the survey, and the fact that confidentiality concerns need not preclude data-collection efforts.

Current as of November 1999

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Internet Citation:

Children with Special Healthcare Needs: Developing Integrated Systems of Care. Workshop Brief, November 3-5, 1999. User Liaison Program, Agency for Healthcare Research and Quality, Rockville, MD.

The information on this page is archived and provided for reference purposes only.

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