Assessing systems quality in a changing health care environment: the 2009-10 national survey of children with special health care needs.

To provide a national, population-based assessment of the quality of the health care system for children and youth with special health care needs using a framework of six health care system quality indicators. 49,242 interviews with parents of children with special health care needs from the 2009-10 National Survey of Children with Special Health Care Needs (NS-CSHCN) were examined to determine the extent to which CSHCN had access to six quality indicators of a well-functioning system of services. Criteria for determining access to each indicator were established and applied to the survey data to estimate the proportion of CSHCN meeting each quality indicator by socio-demographic status and functional limitations. 17.6% of CSHCN received care consistent with all six quality indicators. Results for each component of the system quality framework ranged from a high of 70.3% of parents reporting that they shared decision-making with healthcare providers to a low of 40% of parents reporting receipt of services needed for transition to adult health care. Attainment rates were lower for CSHCN of minority racial and ethnic groups, those residing in households where English was not the primary language, those in lower income households, and those most impacted by their health condition. Only a small proportion of CSHCN receive all identified attributes of a high-quality system of services. Moreover, significant disparities exist whereby those most impacted by their conditions and those in traditionally disadvantaged groups are served least well by the current system. A small proportion of CSHCN appear to remain essentially outside of the system, having met few if any of the elements studied.