Pediatric to adult primary care transition for medically complex youth: A tale of learning from challenges experienced implementing a pilot project during COVID-19

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PurposeThe aim of our article is to describe our learning based on challenges encountered implementing two related pediatric to adult primary care transition pilots for medically complex adolescents and young adults as part of the Children with Medical Complexity Collaborative for Improvement and Innovation Network. DesignWe undertook two sequential pilot projects. The first focused on supporting the transfer stage for an older group of medically complex young adults to facilitate their establishment with an adult primary care provider. Based on our learning from barriers encountered, and setting constraints due to COVID-19, we developed and implemented a second project to engage pediatric primary care providers in initiating and documenting transition preparation discussions for a younger group of medically complex youth. A multi-disciplinary Implementation Team guided each phase’s implementation. ResultsWe did not achieve our objective in the first pilot, partly due to provider reluctance. Providers perceived the patient was not ready, reported that the patient was experiencing active health problems, or wanted to keep the patient on their panel. We partially achieved the second pilot’s objective; three-quarters of identified patients completed their appointments, and electronic health record documentation suggests that providers initiated transition discussions with more than half of those patients. ConclusionsPediatric primary care has an important role in supporting health care transition for medically complex youth. Our findings suggest that pediatric primary care providers require time, connection to adult PCPs, and educational support to realize this role. Practice implicationsTo provide comprehensive transition services for medically complex patients, pediatric primary care will need to develop relationships with adult primary care providers, make available training about transition preparation for its providers, and support patients and families in locating adult primary care providers who are accepting new patients.