P0525 - “All circuits ended”: Family Experiences of Transitioning from Pediatric to Adult Healthcare for Young Adults with Medical Complexity in Oregon

Background: The Oregon Center for Children and Youth with Special Health Needs (OCCYSHN) participates in a federally-funded Collaborative Improvement and Innovation Network (CoIIN) to improve the quality of care for children with medical complexity. OCCYSHN chose to focus on the topic of transition to adult healthcare for young adults with medical complexity (YAMC) for the CoIIN. As part of the CoIIN Environmental Scan, OCCYSHN conducted interviews with families of YAMC in Oregon, to understand their experience of healthcare transition and to develop a Quality Improvement (QI) project to support them in the process of transition.

Aims: This study aimed to explore the experiences of Oregon families of YAMC who had recently transitioned to adult healthcare providers, to inform the development of our QI project.

Methods: This study received approval from the Oregon Health and Science University (OHSU) Institutional Review Board (IRB). We recruited caregivers of YAMC, ages 18 through 22 years, using a purposive sampling method and conducted qualitative interviews with 12 parents and grandparents from three different regions in Oregon. Study team members took notes during the interviews. We de-identified the notes and analyzed the data to generate themes and sub-themes.

Results: Four key themes emerged from the analysis: Absence of transition guidance, Limited adult provider options, Consequences of poor transition and Difficulty working within adult healthcare. Families described having little to no notice about transitioning out of pediatric care; one parent likened their experience to being “dropped off over the edge of a cliff.” There was little communication to families about next steps. As a result, families initiated a range of actions, such as networking with other families to find specialists and applying pressure to the insurance provider to get needed medications. Some difficulties experienced by families in finding an adult provider were limited options provided by insurance and not being accepted as a patient because of complex health conditions. Due to poor handling of transition, there were adverse effects such as gaps in needed care, decline in health status and costly alternatives such as hospitalizations. Families described challenges working with adult providers due to providers’ limited familiarity with caring for young adults with complex medical conditions. They also described not feeling heard by adult providers regarding their concerns about the young adult’s health status and lack of support from the provider on other issues such as guardianship, release of information and obtaining medical equipment.

Conclusions: The results of this exploratory study suggest that YAMC and their families in Oregon are not adequately prepared for, or supported in, the transition from pediatric to adult healthcare. Based on these findings, Oregon’s CoIIN QI project was designed to support families of YAMC in identifying an adult primary care provider.