P2.A016: Qualitative Analysis of Transitioning Patients with Neurodevelopmental Disabilities from Pediatric to Adult Primary Care

Background: There has been an increased rate of neurodevelopmental disabilities (NDD) in children and young adults. Individuals with complex healthcare needs and comorbid NDD have unique behavioral complexity, social vulnerabilities, and complex care coordination needs which necessitate additional support during the transition period from pediatric to adult primary care. Prior to 2021, the Boston Medical Center (BMC) Complex Care Program (CCP) did not have a formal transition process, with an estimated 60% of CCP patients who attempted transition being lost to follow-up with no assigned adult provider. We aimed to formalize a process to increase successful transfer of eligible NDD patients and evaluate their transition and transfer experiences.

Methods: At BMC CCP, patients are eligible to transfer to adult care at age 22, once they complete a transition readiness checklist. In 2021, the transition policy was formalized with integration into the Epic EMR, dedicated transition office visits, a website for families to provide links to relevant resources, and addition of a transition case manager.

A retrospective chart review was performed from 2021-2023 to assess the transfer process formalized in 2021. In 2023, parent/caregiver experiences with the transition process were assessed with a 22-question phone survey, to which 8 caregivers of patients who successfully transferred consented. They were compensated with a $25 gift card.

Results: Sixty-five percent (11/17) of eligible patients with NDD from BMC CCP successfully transferred, defined as attending a new adult primary care visit, within 2 years. Although only 50% of caregivers felt ready to move their child to an adult provider, 75% felt overall satisfied with the transition process.

Conclusion: While we are pleased with the number of successful transfers of care, there are still many challenges. Firstly, 6/17 eligible patients were lost to follow-up, even with adult visits scheduled and frequent case management efforts. While some patients seek adult primary care elsewhere, we want to understand transfer needs as patients move on from CCP.

No-shows and cancellations by patients were a contributing factor, highlighting the need for more case management support. It also remains challenging to find adult primary care providers who are comfortable accepting NDD patients, increasing new visit wait time. We need to form partnerships with providers/clinics who can more readily accept new patients, and improve education for these PCPs to improve comfort level with accepting these patients.

Finally, caregiver feedback emphasized that early discussions about the transfer process were important in helping improve patient and caregiver readiness. They also want more support and education regarding transition-related resources. We want to continue to improve in having formalized conversations about transition early and often.