Comparison of Experiences with Care Coordination for Children with Special Healthcare Needs (CSHCN) in Illinois

Background: Care coordination (CC), a central responsibility of the medical home, significantly impacts health outcomes of CSHCN. Most studies to date have focused on either provider provision of CC or patient experience with CC. Objective: We compared how providers for, and parents of, CSHCN experience subspecialty access, communication amongst physicians, and barriers to CC, and examined associated characteristics. Methods: Two datasets were analyzed: a survey of Illinois primary care pediatricians and the Illinois sample within the National Survey of CSHCN. Results: 376 physicians and 793 parents were analyzed. Providers and parents were highly satisfied with obtaining subspecialty referrals and with communication amongst doctors (76-92%), however 41% of parents and 38% of physicians identified CC barriers. Doctors more frequently reported CC barriers if employed by community hospitals (OR: 2.4 [95%CI: 1.2-4.6]), without academic appointments (OR: 1.6[1-2.4]), did not participate in a medical home project (OR: 4.5[1.7-12.1]), or cared for an overrepresentation of Hispanic patients (OR: 2.1[1.2-3.8]). Parents were 60% less likely to report poor doctor communication if they had a primary caregiver and 60% less likely to report difficulty with referrals if they had a usual place for care. Conclusions: Patients and physicians are overall highly satisfied with access to and communication with subspecialists, however over a third of parents and physicians of CSHCN, particularly non-academic community providers, report CC barriers.