How can we be good hosts to young adults as they cross the threshold from pediatric to adult healthcare?
I was 50 and leading the Patient Family Experience Initiative at Boston Children’s Hospital when I was diagnosed with Multiple Sclerosis. One of the annoying symptoms that led to the MS diagnosis was severe double vision (diplopia) only at a distance, caused by demyelination of the optic nerve. Turned out to be a common pediatric condition, not so much adult. Since I worked at Children’s, I sought treatment at Children’s. Imagine a fifty-year-old man sitting in a pediatric waiting room.
Working at Children’s I soon learned about the challenges children had who survived pediatric conditions, once uniformly fatal. These young adults and their parents suffered from that success. For example, I became immersed in an Autism Friendly Hospital project. Part of that project was managing the transition of young adults on the autism spectrum aging out of pediatric Medicaid coverage and losing support from the federal Individuals with Disabilities Education Act (IDEA). Adult primary care professionals were not prepared to care for these young adults. Also, while working at Children’s I followed the Teen Advisory Committee. This dynamic group made recommendations to improve the quality of care and service for teens and advocated in State government for issues affecting young adults.
More recently, as co-chair of PCORI (Patient-Centered Outcomes Research Institute)’s Clinical Effectiveness and Decision Science Advisory Panel, I’ve learned more about the challenges of finding and funding research that is meaningful to young adults. They aren’t part of pediatric research or adult research. They seldom sit on Advisory Panels or governance boards. Yet young adult experience with the healthcare system can set the table for the rest of their lives.
I’m planning a podcast series about health issues for young adults with chronic and rare diseases. How could we be good hosts to that transition? I’m in the I know enough to be dangerous stage. Can you point me to resources – organizations, people, research, thoughts, experiences about this dilemma and opportunity? If there was one thing you’d like this series to accomplish for young adults, what would that be?
I’d welcome the opportunity to hear from you or speak with you. Scroll down and leave a reply on this blog post or email me at firstname.lastname@example.org. Thanks