Shared Decision Making among Children with Medical Complexity: Results from a Population-Based Survey

To compare the rates of shared decision making (SDM) reported by parents of children with medical complexity (CMC) with the rates of SDM reported by parents of noncomplex children with special health care needs (CSHCN).

We examined the 2009-2010 National Survey of Children with Special Health Care Needs, a representative survey of 40 242 parents of CSHCN. CMC was defined as needing or using more medical care than usual, seeing 2 or more subspecialists, and positive response on at least 3 other items on the CSHCN screener. We identified 3 subgroups each of CMC and noncomplex CSHCN by sentinel diagnoses: asthma, seizures, and other diagnoses. SDM was defined as a binary composite variable, derived from 4 discrete items. We constructed 4 stepwise multivariable models to assess the relative odds of SDM, adjusted for sociodemographic characteristics (age, income, language, race, ethnicity, and marital status), behavioral comorbidity, family-centered care, and patient-centered medical home.

The study population included 39 876 respondents. Compared with noncomplex CSHCN, CMC had a lower likelihood of SDM (aOR, 0.76; 95% CI, 0.64-0.91), which persisted in diagnostic subgroups: CMC with asthma (aOR, 0.67; 95% CI, 0.49-0.92) and CMC with other diagnoses (aOR, 0.74; 95% CI, 0.58-0.94), but not CMC with seizures (aOR, 0.95; 95% CI, 0.59-1.51).

SDM is less common for CSHCN with complex needs than those without complex needs. Health system interventions targeting future-oriented care planning may improve SDM for CMC.