Shared Decision-making for Families Facing Adversity and the Role of the Medical Home

Background: Shared decision-making (SDM) is a key component of patient-centered care and is encouraged for children with special health care needs (CSHCN) to improve communication and treatment outcomes. Families of children with adverse childhood experiences (ACEs) represents another vulnerable population that requires special attention to collaborative clinical SDM. The relationship between ACEs and SDM has not been explored, and we hypothesize may be affected by access to a medical home, a comprehensive and coordinated approach to high-quality primary care. We describe the association between ACEs and SDM among a national sample of children, and examine the relationship between ACEs and SDM with and without medical home access.

Methods: We analyzed data from the 2018 National Survey of Children’s Health (NSCH), an annual survey of randomly sampled US households answered by parents of children ages 0-18. The primary outcome, experiencing SDM (yes/no), was based on 3 survey items among respondents needing medical decisions made in the last 12 months. The independent variable of interest was ACE exposure, comprising 9 maltreatment and household dysfunction experiences, and was categorized as 0, 1, or 2 or more ACEs. We modeled the relationship between ACEs and SDM using multivariable logistic regression and then stratified regression by medical home access, measured as a yes/no variable based on the presence of 5 key components. We controlled for child age, race/ethnicity, household federal poverty level, parental education, health insurance type, household language, and CSHCN status.

Results: The analysis sample included 7,778 participants that needed medical decisions. In multivariable analysis, parents of children with 2 or more ACEs reported less SDM than those of children without ACEs (adjusted odds ratio (aOR)=0.67, 95% confidence interval: 0.46-0.98) (Table 1). In stratified analysis, parents of children with 2 or more ACEs were less likely to experience SDM (aOR=0.61, 95% CI: 0.41-0.91) if they did not have a medical home. In the subpopulation with a medical home, the relationship between 2 or more ACEs and SDM was no longer significant (Table 2).

Conclusion: The findings suggest that families of children with higher ACE scores are less likely to experience SDM; however, this association is not significant among families with access to a medical home. This difference in patient-centered care delivery may have implications for healthcare utilization and outcomes among children with ACEs. As we strive for health equity, it will be critical to understand what SDM means to families facing adversity and how medical homes may support SDM.