Make a plan to help patients and families move into adult care.
By Abigail Nye, M.D.
A 2009-10 National Survey of Children with Special Health Care Needs found that more than 50 percent of parents said no one talked to them about the upcoming need for their children to see adult providers. To help with this at Cincinnati Children’s Hospital Medical Center, we started the transition medicine clinic over a year ago. Because we’re not part of a system with an adult hospital, it’s helped us gain an understanding of just how complicated and widespread this feeling of unpreparedness is among families.
In our transition medicine clinic, we ask parents: Does your teen schedule his or her own doctor’s appointments? Does he or she know how to fill a prescription? Do you know what doctor(s) your child will see when he or she becomes an adult? They’re simple questions with big implications. The goal is to help teens and young adults feel empowered to manage their own health care and eventually transition to adult care. Although the main focus is health care transition, our team approaches this with the awareness that there are many other life transitions occurring at this point in our patients’ lives that may affect how they manage their health care.
While eventual “graduation” is the main objective, the execution of it gets complicated for many reasons. Some patients have complex conditions, some don’t. Some patients already have a primary care doctor; some have been dismissed from a practice due to their age. Some patients with complex medical conditions have not been able to find adult health care providers familiar with their conditions. Each of these situations has their own set of challenges that we help patients manage. But what we can help parents with is a list of questions that all teens, regardless of their medical situation, should be able to answer. This is by no means a comprehensive list, but knowing the answers to these questions can help parents start the conversation with their teens to prepare them for the transition.
In the last year, we’ve helped almost 400 patients navigate this complicated process. The overwhelming sentiment we hear from them is relief. Many of them were dismissed from a practice due to their age and have subsequently been out of care for a long time. Others were approaching the transition age and were feeling anxious about where they were going to go next. Our job as providers is to help parents and teens start to think about it and prepare.
Transitioning to adult care is a natural, expected process, and it will go a lot more smoothly when there is a plan in place. Encourage families to talk to their current provider about it now, and seek help if they’re not getting the information they need. There are many resources available to help providers talk with parents about this process, such as those from the National Health Care Transition Center and the National Center for Medical Home Implementation from the American Academy of Pediatrics.
10 essential questions
Questions parents can help their teens prepare to answer:
What are your medical conditions?
Who are your doctors? How do you contact them and schedule appointments?
Who should you call in a medical emergency?
What are your dietary or medical restrictions?
What medications do you take, and are there any potential interactions?
How do you fill a prescription?
What should you do if you have a bad reaction to medication?
At what body temperature do you have a fever?
Where should you keep your insurance card?
What is our family's health history?
Abigail Nye, M.D., is the director of transition medicine at Cincinnati Children’s Hospital Medical Center.
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