The Medical Home and Its Predictors in Children with Autism Spectrum Disorder, Other Developmental Disabilities, and in the General Population

Background: The American Academy of Pediatrics recommends care in a medical home as the model for pediatric care. Receiving care in a medical home is associated with less delayed care and few unmet health care needs. While previous studies report that children with autism spectrum disorder (ASD) are less likely to receive care in a medical home than those without ASD, further study is needed to understand the predictors of having a medical home in children with and without ASD.

Objectives: We used data from the Study to Explore Early Development phase 2, a US multi-site case-control study of children 3-5 years old, to compare the percentages and assess predictors of having a medical home among children with ASD (n=769), other non-ASD developmental disabilities (DD, n=806), and the general population (POP, n=750).

Methods: Data on children’s health and service utilization were collected via a maternal-reported form, which included information on five medical home components: 1) child has a usual place for care, 2) child has one or more personal doctors/nurses, 3) receipt of family-centered care (based on mother’s experience with providers), 4) obtaining referrals for specialty services if needed, and 5) receiving help for child’s care coordination if needed. A child was classified as having a medical home if the mother endorsed all applicable medical home components for that child (e.g., some children did not need referrals or care coordination). We compared odds of medical home between the three study groups adjusting for sociodemograhics, child health and developmental characteristics, and maternal health conditions using logistic regression. We also assessed predictors of having a medical home in logistic regression models stratified by study group.

Results: The percentage of children with a medical home was 46.3%, 52.0%, and 69.5% for ASD, DD, and POP, respectively. Compared to POP, the odds of having a medical home were lower in children with ASD (adjusted odds ratio [aOR]=0.65 [95% CI: 0.48-0.89]) and DD (aOR=0.65 [0.51-0.83]). These differences between ASD, DD versus POP were mostly attributable to three medical home components: referrals; care coordination; and family-centered care. Among the POP group, older maternal age and non-Hispanic white race were positively associated with medical home, while child cognitive score <70, sleep problems, and internalizing behaviors were inversely associated with medical home. In the ASD group, non-U.S. maternal birthplace and child internalizing behaviors were inversely associated with medical home. In the DD group, low family income, child internalizing behaviors, and mother diagnosed with ADHD were inversely associated with medical home.

Conclusions: Children with ASD or DD were less likely to receive care in a medical home than POP children. The predictors of having a medical home varied between study groups. Moreover, despite assessment of numerous child and maternal characteristics, we found only a few associations between medical home and individual-level variables in children with ASD or DD. These results suggest that additional research on other factors, including those related to the healthcare system globally, could inform ways to improve medical home access in children with ASD or DD.