519 - Care Bundles for Patients with Intellectual and Developmental Disabilities in Pediatric Primary Care

Publication Number: 1499.519

Alyssa Swick, Indiana Complex Care Coordination Collaborative, Indianapolis, IN, United States; Mary R. Ciccarelli, Indiana University School of Medicine, Indianapolis, IN, United States; Katharinar M. Weber, IU School of Medicine, Plainfield, IN, United States; Carrie Leathers, Indiana University School of Medicine, Indianapolis, IN, United States; Rebecca McNally, Indiana University School of Medicine, Indianapolis, IN, United States

Background: Primary care clinicians (PCC) encounter barriers delivering longitudinal care for children with intellectual and developmental delays (IDD), including gaps in training, need for longer appointments to manage and coordinate care, and a lack skill in navigating fragmented and siloed systems of disability services across their community and state. Our team's prior statewide efforts yielded improvement in rates of developmental screening and implementation of a learning collaborative to bridge training gaps. Throughout these initiatives, PCCs have requested increased training in chronic care management (CCM), awareness of key community services, and delivery of accommodations for persons with IDD and disabilities.

Objective: This project aims to address gaps in referrals and services for children with IDD through both implementation of a patient registry and increasing PCC actions on unmet needs.

Design/Methods: PCCs were recruited into a QI project using institutional and statewide listservs. Participants measured the number of patients with at-risk screens per month and the rate of actions taken on those screens in three areas: primary care actions (PCAs), specialty referrals, and community services. Interventions included 1)monthly feedback on individual and summed indicators with focus on methods of CCM and primary care actions to deliver referrals or targeted follow-up by PCCs and 2) brief didactic training on bundled activities of tools easily accessible through a hyperlinked index on a patient-facing website, https://4ourhealth.org.

Results: 41 PCCs joined in response to statewide recruitment outreach by email and newsletters. Within their registries, PCCs tracked 1526 (monthly mean increase: 12; range: 15-175) patients with IDD (Figure 1). PCCs took actions on a mean of 73% of the cases per month (range: 65-77%); there were no changes in patterns of actions taken by time (Figure 2). PCAs (mean: 50%; range: 40-56%) and community actions (mean: 45%; range: 40-50%) showed a pattern of improvement over time, with a possible trend toward decreasing specialty care (mean: 39%; range: 36-41%) actions (Figure 3). Rate of zero actions (mean: 13%; range: 6-24%) taken on patients showed a decreasing pattern over time (Figure 3).

Conclusion(s): Rates of PCC actions for further evaluation and services in patients with IDD improved across this QI initiative, predominantly through increases in both PCAs and community actions. Providing accessible bundles and fingertip tools enabled PCCs to integrate a CCM approach to addressing gaps in care for children with IDD during busy primary care clinics.

Figure 1: Total Number of Patients on Individual PCC Registry
1,526 patients enrolled over 4 months of QI project, avg 54.5 per PCC, range 15-175 per PCC

Figure 2: Average rate of action taken by PCC to address unmet needs for patients on registry
% of patients with actions taken throughout each month of QI project

Figure 3: Actions taken
% of patients with actions in each area (primary care, community, or specialty care) and % of patients with no action taken in each month of QI project