Coordination of Care for Children with Autism Spectrum Disorder at an Urban Primary Care Pediatric Practice

Background: Autism Spectrum Disorder (ASD) is a common pediatric diagnosis often provided by subspecialists and managed by the medical home. Recommendations for a newly diagnosed child often involve a combination of medical and behavioral referrals. Coordination between subspecialists and the medical home can potentially result in improved care. Embedded behavioral health services in the medical home provide an opportunity for enhanced collaboration. Little data is available about how primary care providers are involved in the coordination of care and implementation of recommendations for children with ASD. The goal of this study was to compare the uptake and follow-through of recommendations for children with ASD in a primarily Medicaid-insured pediatric outpatient clinic when patients received care from a developmental-behavioral pediatrician (DBP) embedded on-site (EDBP) or a DBP at the off-site main DBP clinic (ODBP).

Methods: Data from September 2014 to December 2020 were reviewed. Data were obtained via retrospective chart review of patients with ASD who received a diagnosis and follow up care with an EDBP or ODBP. Data were analyzed where appropriate using Chi-Square analyses, Fischer’s exact tests, and two-tailed t-tests. Research was approved through the UH IRB.

Results: 94 charts were reviewed (51 EDBP and 43 ODBP). Demographics of the patients were similar, although EDBP patients received an ASD diagnosis at a younger age than ODBP patients [EDBP (4.33, SD 2.16), t=1.9, p=0.06 vs ODBP (5.39, SD 3.1)]. The primary care provider (PCP) was more likely to review reports from the EDBP v. ODBP [X2 (1, N=94) = 8.13, p<.01], and to document follow-up recommendations from the EDBP v. ODBP [X2 (1, N=94) = 5.13, p=0.023]. However, the PCP was not more likely to address behavioral health (BH) concerns in either group (p=1, OR 0.728). After initial DBP evaluation, there was no difference in the proportion of patients who connected to referred therapies [X2 (1, N=88) = 0, p=1], specifically occupational therapy (p=0.719, OR 0.686), speech therapy (p=1, OR 0.902), ABA therapy (p=0.22, OR 0.385), or school-based services (p=0.659, OR 0.562). The difference in average number of connected services neared significance [EDBP (0.92, SD 1.09), t=1.77, p=0.08 vs ODBP (0.58, SD 0.76)]. The proportion of no-show BH appointments did not differ [X2 (1, N=497) = 0.53, p=0.466]. Patients in both groups reported barriers to accessing follow up services, including transportation, long wait-lists, feeling overwhelmed, and preoccupation with comorbid conditions.

Conclusion: Enhanced coordination of care with the PCP was demonstrated when the DBP was on-site v. off-site. However, follow through on recommendations and no-show appointments were not different between the two groups. Future research is necessary to understand how to better connect families to recommended therapies and follow up care.