Young Adults Crossing the Threshold from Pediatric to Adult Healthcare

By December 30, 2018 Advocate, ePatient

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 danny@health-hats.com. Thanks

Photo by Anton Darius | @theSollers on Unsplash

Related posts

The Minnow Who Thought He was the Ocean

EHR Access for the Family Caregiver

What’s Pokeman Got to Do With It?

 

Danny van Leeuwen

Danny van Leeuwen

Patient/Caregiver activist empowering people as they travel toward best health

2 Comments

  • Courtney says:

    As a woman who was diagnosed with Crohn’s Disease at the age of 13, there were pediatric gastroenterologists, and now I see adult Gastro’s, but there was no one to help me through those middle years. No one to help me with the challenges I would face having IBD, no one to talk to me about pregnancy and Crohn’s, how to talk to friends about it, how to do my own research on treatment options. A podcast like yours sounds like a great idea!

  • Kathy says:

    As a mom with a 19 year old childhood cancer survivor, I can tell you that there really isn’t any structure in place to help these young adults. Some care providers do a better job than others, in trying to educate a late teen to take responsibility for their health and healthcare. Just because an adult was managing everything before, doesn’t mean that the young adult paid any attention to how to manage their own healthcare. Since my son turned 18, I’ve had to walk him through the process of filling out his own health forms at appointments. He still needs coaching on making phone calls for health problems, including where to find providers, what to say when calling, etc. When seeing his oncologist last week, I was thrilled to watch him fill out his own health form without a single question for me. He no longer needs reminders to take his insurance card with him to appointments and medical tests. That being said, it’s still terribly frustrating with multiple phone calls, because no one can tell me anything without his permission. The podcast idea sounds great. I hope you find some savvy young people to tell the newbies how to do it.

Leave a Reply to Kathy Cancel Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.