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

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.