Adolescents and young adults (AYA) transitioning from pediatric to adult health care systems face numerous challenges, including lack of logistical support with identifying appropriate adult providers, navigating communication with insurers, and transferring care to the new provider. Pediatric clinicians lack expertise in these systems-coordination skills and dedicated time to provide this level of care coordination. The purpose of this project was to evaluate the initial implementation of direct support for AYA patients and their families with transfer of care-related coordination.
Within the context of an institution-wide approach to transition support for AYA, we designed and implemented the Navigation Hub. The hub serves as centralized support for navigating insurance and benefits systems and transfer to adult providers. Patients are referred to the hub by their subspecialty clinical team. Three case managers meet with patients to identify patient priorities, explore provider availability within the insurer’s care network, and assist with transfer-related coordination and establishment of service with benefit programs. Support for an individual patient continues until all transfer-related goals are achieved. To ensure continuous refinement of services offered, we conducted a survey of providers whose patients had accessed the hub at three months and one-year post-implementation. We also conducted a survey of patients and families after their transfer-related goals were achieved.
The Navigation Hub was launched in September 2020 with support for four subspecialty clinics. An additional four clinics were added in January 2021 and two in June 2021, with the goal of continued expansion until navigation support is available for patients across the institution. To date, 252 patients have received support. Reasons for referral include assistance with identification and transfer to adult primary care provider (61.9%) and to adult specialty care provider (80.6%); assistance with public benefits (13.1%), insurance navigation and troubleshooting (40.1%); guidance with conservatorship (11.9%), health care power of attorney (6.7%), educational accommodations (6.0%); and other (10.7%). Survey responses from clinicians and providers (n=27) indicated high levels of satisfaction with the ease of referring patients, communication with case managers, and overall quality of services. Survey responses from patients (n=9) and parents/guardians (n= 6) indicated high levels of satisfaction with services, communication and time spent with the case managers, and support received. Of the patient respondents, 100% indicated increased confidence in calling their primary and/or specialty care doctors' offices, knowing where to access their medical records, knowing where to look for information about public benefits, asking their primary and/or specialty care providers questions about their health needs, and completing health care-related forms. Majority (83.3%) indicated increased confidence in knowing where to find information about their insurance.
The Navigation Hub fills a critical gap in the care delivery system for AYA transitioning from pediatric to adult providers by removing transfer-related care coordination activities from pediatric providers to a centralized group with coordination expertise. Ongoing evaluation will help to identify standard processes for this coordination, activities of greatest value, and mechanisms for long-term financial viability.
Sources of Support
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