The health care system divides itself into pediatrics and adult medicine, which can leave older teens and young adults in-between. But it’s important that rare disease patients make a successful transition into the adult health care system, experts said last week at the U.S. National Institutes of Health Rare Disease Day event.
Patients in this age bracket don't quite fit into the health system as it exists today, said Hillary Gan, Director of Hospital Programs and Services at Teen Cancer America Gan said. Brittany Holmes agreed, speaking as both a rare disease patient and a Nurse Practitioner in the Division of Genetics and Genomics at Boston Children’s Hospital. Pediatricians and their facilities aren’t well equipped to handle adult challenges, Holmes said. While that doesn’t bar the patient from being treated there, the care may be less beneficial, she said. Adolescent and young adult patients don’t feel seen as adults there, she said.
“I cannot tell you how many times I called to make an appointment and they’re like ‘what’s your child’s name?’ Well, me, I’m the 30-something year old child,” Holmes said. “But that's something that happens a lot.”
Support is lacking to help patients make this transition, which is often twofold. Patients must leave familiar doctors and health care settings and they’re expected to take on jobs that parents or guardians previously handled: educating themselves about their condition; setting up appointments; filling prescriptions; and navigating health insurance.
Holmes says providers can take these steps to support patients and their families:
- Pediatric and adult centers could collaborate to guide patients though the health care system.
- Supply patients and their parents with a written plans and resources.
- Expand research on long-term outcomes so patients feel more motivated to follow adult care plans.
Start the process earlier – as young as 12 – and make it a gradual acceptance of responsibility, said Abbey Hauser, a young adult rare disease advocate. With that approach, a patient can “become the captain of their rare disease” when the time is right and avoid the health risks that can come with a rocky transition to adult care.
She suggests parents take these steps:
- Educate your child on their condition.
- Anticipate the course of the disease and future challenges.
- Prepare them to take the lead early on and take cues from how they approach this new responsibility.
“Becoming the captain of your rare disease boat doesn't need to be an experience filled with fear and uncertainty like mine did,” Hauser said. “We can help the kids of the future become strong leaders in their care.”