Most Children With Medical Complexity Do Not Receive Care in Well-Functioning Health Care Systems

Abstract

OBJECTIVES: To describe the access of children with medical complexity (CMC) to well-functioning health care systems. To examine the relationships between medical complexity status and this outcome and its component indicators. PATIENTS AND METHODS: Secondary analysis of children in the National Survey of Children’s Health combined 2016–2017 data set who received care in well-functioning health systems. Secondary outcomes included this measure’s component indicators. The χ2 analyses were used to examine associations between child and family characteristics and the primary outcome. Adjusted multivariable logistic regression was used to examine relationships between medical complexity status and primary and secondary outcomes. Using these regression models, we examined the interaction between medical complexity status and household income. RESULTS: CMC accounted for 1.6% of the weighted sample (n = 1.2 million children). Few CMC (7.6%) received care in a well-functioning health care system. CMC were significantly less likely than children with special health care needs (CSHCN) (odds ratio, 0.3) of meeting criteria for this primary outcome. Attainment rates for secondary outcomes (families feeling like partners in care; receives care within a medical home; received needed health care) were significantly lower among CMC than CSHCN. Family income was significantly associated with likelihood of meeting criteria for primary and secondary outcomes; however, the relationships between medical complexity status and our outcomes did not differ by income level. CONCLUSIONS: CMC are less likely than other CSHCN to report receiving care in well-functioning health care systems at all income levels. Further efforts are necessary to better adapt current health care systems to meet the unique needs of CMC.