Parent-Reported Shared Decision Making: Autism Spectrum Disorder and Other Neurodevelopmental Disorders

Assess differences in parent-reported shared decision making (SDM) based on diagnostic group in a national sample of children with neurodevelopmental disorders (autism spectrum disorder [ASD], cerebral palsy [CP], or Down syndrome [DS]). Assess contribution of medical home and child functional impairment.

Secondary analysis of 2009 to 2010 National Survey of Children with Special Health Care Needs explored reports of 3966 children with ASD, CP, or DS. SDM was defined categorically (SDMcat, present or absent) and continuously (SDMcont, score range 0-12). Regression models were adjusted for child/family characteristics, medical home, functional impairment, and diagnostic group.

SDMcat and SDMcont were significantly lower in the ASD group (56.7% [95% confidence interval = CI, 53.4-59.9] and mean 8.7 [95% CI, 8.5-9.0]), compared with the CP group (70.5% [95% CI, 63.4-76.7] and mean 9.7 [95% CI, 9.3-10.1]), or the DS group (70.8% [95% CI, 61.2-78.8] and mean 10.0 [95% CI, 9.5-10.4]). In adjusted analyses of SDMcat and SDMcont, SDM was more likely among children with a medical home (adjusted odds ratio 6.6, p < .001, mean = 11.9, and p < .001), and less likely for children with greatest functional impairment (adjusted odds ratio 0.4, p = .002, mean = 10.1, and p = .001). Adjusted analysis of SDMcont also showed differences based on diagnostic group with lower SDMcont scores in the ASD group (mean = 10.1 and p = .005) compared with the DS group.

A medical home was associated with higher SDM, whereas greater functional impairment and ASD diagnosis were associated with lower SDM.