Disparities in Shared Decision Making and Service Receipt Among Children With Special Health Care Needs and Developmental Delay: A National Survey Analysis

J Prim Care Community Health. 2020 Jan-Dec:11:2150132720924588. doi: 10.1177/2150132720924588.


Shared decision making (SDM) is associated with increased service satisfaction among pediatric patients. Our objective was to examine the association between SDM and service use experiences across racial/ethnic child groups. This secondary data analysis used the 2009-2010 National Survey of Children with Special Health Care Needs (CSHCN) and 2011 Pathways to Diagnosis and Services Survey. We used a rank-and-replace matching approach consistent with Institute of Medicine recommendations for health disparities research. We included CSHCN aged 6 to 17 years. The exposure of interest was parents of CSHCN reporting engagement in SDM with clinicians. There were 4032 CSHCN included in analysis. CSHCNs experiencing SDM had a 16% higher probability of reporting service use compared to those not experiencing it (95% CI, 14.24-19.42). Black children experiencing SDM reported seeing all needed care providers at a lower rate than whites (79% and 87.6% respectively; 95% CI, -14.05-3.27). The benefit of SDM over not experiencing it for blacks was 12.2% less than for whites for the outcome of seeing all needed care providers. For the outcome of receiving all needed treatments and services, the SDM benefit was 9.1% lower for Hispanics compared with whites. SDM can improve service experiences but implementation flexibility may be needed.

Keywords: children with special health care needs; patient-centered care; racial and ethnic health care disparities; service experiences; shared decision making.

MeSH terms

  • Child
  • Child Health Services*
  • Decision Making
  • Decision Making, Shared
  • Delivery of Health Care
  • Disabled Children*
  • Health Services Needs and Demand
  • Humans
  • Parents