Assessing Systems Quality in a Changing Health Care Environment: The 2009–10 National Survey of Children with Special Health Care Needs

Abstract

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.

Clarifying the Predictive Value of Family‐Centered Care and Shared Decision Making for Pediatric Healthcare Outcomes Using the Medical Expenditure Panel Survey

“…; Strickland et al. ). Covariates used to characterize the study sample and controlled for in multivariable analysis included child age, sex, race/ethnicity, primary household language, household income relative to the federal poverty level (FPL), highest parent education level, census region, urbanness (i.e., metropolitan statistical region vs. nonmetropolitan statistical region), health insurance status and type, special health care needs status assessed by the CSHCN Screener (Bethell et al.…”

“…Covariates were identified as predisposing characteristics, enabling resources, or health care need factors according to previous FCC/SDM research (Bethell, Read, and Brockwood 2004;Denboba et al 2006;Thompson et al 2009;Coker, Rodriguez, and Flores 2010;Fiks et al 2010Fiks et al , 2012aGuerrero et al 2010;Kuo, Bird, and Tilford 2011;Kuo, Frick, and Minkovitz 2011;Raphael et al 2011;Romaire, Bell, and Grossman 2012a,b;Smalley et al 2014;Strickland et al 2014). Covariates used to characterize the study sample and controlled for in multivariable analysis included child age, sex, race/ethnicity, primary household language, household income relative to the federal poverty level (FPL), highest parent education level, census region, urbanness (i.e., metropolitan statistical region vs. nonmetropolitan statistical region), health insurance status and type, special health care needs status assessed by the CSHCN Screener (Bethell et al 2002a,b), illness/injury care need(s), specialty care need, and overall health status (Appendix SA2).…”

Shared Decision Making in the Care of Children with Developmental and Behavioral Disorders

“…Models controlled for socio-demographic factors that might confound the relationships between the main explanatory and outcome variables through their association with differences in health status, health care quality (including shared decision making) or condition severity. (10, 13–15) These included: child age, gender, race/ethnicity, household language, household income relative to the federal poverty level (FPL), health insurance status and type, highest parental education level, family structure, and geographic region. We also examined the total number of co-morbid health conditions.…”

The rural mother's experience of caring for a child with a chronic health condition: An integrative review

“…Chronic health conditions are increasing in children worldwide (Perrin, Bloom, & Gortmaker, ; Sodi & Kgopa, ; Strickland et al., ). Children usually do not choose where they live, the diet they eat or their ways of life; rather, these are determined in the main by their family circumstances (Riley et al., ).…”

“…Nurses and health professionals are in an ideal position to develop future models of care that optimise health outcomes and enable equity and access to services for rural children with chronic conditions similar to those experienced by their urban counterparts. Chronic health conditions are increasing in children worldwide (Perrin, Bloom, & Gortmaker, 2007;Sodi & Kgopa, 2016;Strickland et al, 2015). Children usually do not choose where they live, the diet they eat or their ways of life; rather, these are determined in the main by their family circumstances (Riley et al, 2016).…”