“All circuits ended”: Family experiences of transitioning from pediatric to adult healthcare for young adults with medical complexity in Oregon

Background: Transition to adult health care for young adults with medical complexity (YAMC) is challenging and much work needs to be done in this area. The Oregon Center for Children and Youth with Special Health Needs participates in a federally-funded Collaborative Improvement and Innovation Network (CoIIN) to improve the quality of care for children with medical complexity. Aims: This study aimed to explore the experiences of Oregon families of YAMC who had recently transitioned to adult health care providers, and obtain recommendations for transition from family members, to inform the development of the CoIIN quality improvement project. Methods: We recruited caregivers of YAMC, ages 18 through 22 years, using a purposive sampling approach and conducted semi-structured interviews with 12 parents and grandparents. We analyzed the interview data to generate themes and sub-themes. Results: Families described having little to no notice about transitioning out of pediatric care and reported that their providers did not communicate with them about the steps needed to ensure a continuation of care into adulthood. Poor transition processes contributed to gaps in needed care, decline in health status of the young adults and psychological burden on the family. Families had to take on the responsibility of meeting the transition needs of YAMC and faced challenges in finding adult providers. Conclusions: The results of this study suggest that YAMC and their families cared for by Oregon health care settings are not adequately prepared for, or supported in, the transition from pediatric to adult health care.