The field of pediatric medicine has come a long way in the past few decades. Kids with health conditions like sickle cell disease, heart conditions, even cancer are living, full, healthy lives into adulthood.
It’s a great accomplishment, but with increased survival rates come unique challenges. In addition to treating their chronically ill patients, today’s pediatricians need to prepare them for adult life, where they will be responsible for managing their own health. But according to a recent national survey, we doctors aren’t as good at helping our patients transition into adulthood as we could be: less than half of all kids with chronic health conditions receive the services they need for a successful transition to adulthood.
Because Boston Children’s works with such a large pediatric population, most of our staff is aware of the lapses in care that can happen when a person transitions from a child care setting to one for adults. We’re also committed to lessening that gap, so we’re participating in a national initiative, funded by a federal grant through the National Health Care Transition Center, called “Got Transition?”
Boston Children’s “Got Transition?” team, led by Niraj Sharma, MD, and Richard Antonelli, MD, meets monthly to review progress and strategies for transitioning young people from both our primary care clinics and specialty programs. Meetings focus on six key areas:
1. Health care transition policy
The team is developing written policies that are shared with patients, families and staff outlining the steps for a smooth transition. Having a written policy in place increases awareness, promotes pre-planning and keeps everyone on the same page. For example, the policy at Martha Eliot Health Center states that all patients ages 14 and up will start planning for the transition to adult care.
2. Transitioning youth registry
Before we can help children transition to adult care settings, we need to identify who they are. Our team maintains lists of all patients, ages 14 through 22, and monitors those who need to increase their self-care management skills as they go through the transition process.
3. Transition preparation
Transition isn’t just about changing doctors; it’s about teaching young people the skills they’ll need to live a healthy adult life. To do so, young patients need to take control of aspects of their own health at appropriate times. Do our patients remember to take their medicines without reminders from mom and dad? Do they know why they take that medicine? Do they call and schedule their own appointments? Do they carry their own insurance card? Can they plan ahead and bring questions to ask their provider? We use checklists like this to see how prepared our patients are for adult care. If a patient is having problems, we help them find techniques and routines that better support their independence.
4. Transition planning
A smooth transition requires planning and structure. This includes having all of a patient’s medical information in one place. We work with patients to develop personal transition action plans and brief medical summaries that can be easily shared with new doctors and specialists. These are simple, one-to-two page documents that have all the patient’s important health information, like allergies, surgeries and medications.
5. Transfer of care
Boston Children’s practices are working with patients and families to identify adult primary care doctors and adult specialists that they can see once they’ve left our offices. Our pediatric medical team directly communicates with the patient’s adult medical team, so transition is as seamless as possible. For example, Boston Children’s Sickle Cell Disease Program actively helps patients find adult providers at Boston Medical Center and helps foster the eventual hand-off of care.
Once patients connect with an adult primary care doctor and specialist, we want to know that the journey was a success. We check in with patients who have moved on to see how their care is going and offer advice and help if things aren’t going as well as anticipated.
Having transition plans in place is one thing; making them work for a diverse patient population is something else all together. To get the patient perspective on what it’s like to transition from Boston Children’s, we spoke with Michelle, a 23-year-old woman who recently transferred from Boston Children’s to adult care.
1. What has been the most difficult transition adjustment for you?
Honestly, I think navigating a new hospital has been the toughest. I’ve been at Boston Children’s for my whole life, so I’ve come to know so many people. Not just doctors and nurses, but social workers, phlebotomists, even the janitorial and cafeteria staff. Not seeing the same friendly faces all the time has been tougher to adjust to than I thought it would be.
2. What’s been the easiest part of the change?
Having my medical world truly reflect my journey into adulthood. I’ve known many of my doctors since I was a baby, and I think some people who remember us since we were children have a hard time recognizing us as adults. Having staff that only knows the adult you is a nice change of pace.
3. How has your pediatric team helped with your transition?
I’ve been extremely lucky to have so many great people behind me. I’ve found doctors who truly care about my wellbeing. They know everything about my diagnosis and treatment—as well as who I am as a person—and have been very supportive as I venture into adult care. They’ve consulted me on what to do, what doctors to seek out and helped me forge those relationships once I decided on where I wanted to go. I really couldn’t ask for a smoother and more comforting transition between doctors than what I had.
It’s also been nice having all my files already transferred without me having to go and get them myself, which I can thank Boston Children’s for.
4. What role has your family played in your transition?
It’s been a bit rough on my family. My dad has been my main caretaker for so many years, so it’s hard for him to let go and really let me make my own decisions. I understand his worries: he’s scared that I may not know something, or rush into a decision, because I don’t have nearly the adult experience of managing my care that he has. It’s been an interesting and ongoing lesson in trust and respect. It hasn’t always been the easiest situation to deal with, but now it’s up to me to take the full reins and decide what’s best for me as an adult.
But I haven’t given up on his support cold turkey. My dad still helps me out on occasion, and I wouldn’t be who I am today, as patient and woman, without him.
5. Moving forward, what aspect of adult care are you most looking forward to?
I’m looking forward to being treated as an adult. Though I’m grateful for all their help, I’m a bit tired of being asked by the occasional doctor if my tummy hurts. I’m also eager to be with other adult patients. Waiting rooms with toys, cartoons and coloring books are nice for children, but I’m ready for a doctor’s office featuring with magazines aimed at people with a reading level beyond the second grade. Becoming an adult patient is about more than the doctors you see, it’s about your overall hospital experience; making that change is much easier when you’re fully immersed in an adult environment.
Are you in the process of transitioning from pediatric to adult care? Has your teenage child begun taking more of an active role in her health care? How did you foster that independence?
If you have advice about what has worked for your family in terms of making a smooth transition to adult care—or questions for those who have—please share them in the comments section where your fellow patient families can benefit from your personal experience.
For more transition information, Boston Children’s Centers for Young Women’s and Young Men’s Health have material on the subject written specifically for teenagers, including tips on planning for college with disabilities and a precollege health checklist.