As a pediatrician, I share many milestones with my young patients and their parents – from a first tooth and a first step to the sometimes-awkward adjustments of the teenage years. But one of the most important milestones is my patients’ graduation to adult medicine.
This transition requires thoughtful preparation for all young people, but planning ahead is especially critical for the nearly 1 in 5 adolescents in the United States with special healthcare needs – conditions that range from asthma, autism, Down syndrome and diabetes to cancer, cystic fibrosis, sickle cell disease and mental illness. According to the Data Resource Center for Child & Adolescent Health, a third of these adolescents have three or more chronic conditions. That means that when these young people turn 18, they will likely need not just a new primary care physician, but a new team of specialists.
I recommend that all of my patients begin thinking about this transition and selecting new doctors at least six months to a year before they turn 18. But many experts recommend that the process begin as early as age 12. This is an especially good idea when young people have complicated medical needs.
It can be a shock for parents whose children are severely disabled to learn that they lose the right to be involved in their health care when they turn 18. So it’s particularly important for parents of children with cognitive impairment to plan ahead and seek out legal advice. Options range from guardianship or a power of attorney to less-restrictive consent forms that teens can sign to allow parents to continue to participate in their medical care. Advocacy groups that specialize in specific disabilities or diseases can often help families find free legal support.
All children can benefit by gradually learning to take responsibility for their own health care. There is a natural transition at age 12 or 13, depending upon the laws in your state, when teenagers have the right to confidentiality for issues related to puberty, sexuality, mental health and drug and alcohol use. Research has shown that most teens will be wary of raising these issues and confiding in their pediatrician if their parents are involved, so most pediatricians ask parents to step out of the room for this confidential part of the annual check-up. I have found that while some parents might be resistant at first, the vast majority are supportive once I explain the reasoning behind the policy. Respect for young people’s privacy not only encourages them to confide in their doctors, but it also eases them into adulthood by gifting them with new responsibility for some of their most intimate medical concerns.
There are a number of other, more basic ways to prepare your child for the transition to medical adulthood. Young teenagers can start carrying their own health insurance cards, scheduling their own appointments and keeping their doctors’ contact information in their phones. You can also encourage your teen to keep track of his or her own medications, including keeping a written list and medical history. And it’s never too early to become familiar with the vocabulary of health insurance. What is a co-pay? When do you need a pre-authorization for a particular medication or for a specialist? What is the difference between in-network and out-of-network care?
Teens with chronic conditions and developmental problems need to learn self-care skills, including administering medications and managing their diet and exercise programs. Your pediatrician or pediatric specialist can refer you to organizations that offer disease-specific self-care classes.
Many pediatricians continue to see their patients through college, but at Mid-Atlantic Permanente Medical Group (MAPMG), where I practice, patients transition to adult care at 18, and I encourage them to start thinking about choosing a new doctor or doctors at least six months before. Do they prefer a male or female? What kind of personality or other qualities are they looking for? Will they continue to live at home or will they move to a new location to work or go to school? Does their preferred new physician accept their health insurance?
If patients are being followed by pediatric specialists, those doctors also need to do some hand-holding as they pass the baton.
At MAPMG, we keep electronic medical records that are shared by the whole system, which makes that part of the transition seamless. But if you’re switching between practices that keep different kinds of electronic medical records, or from a practice that doesn’t keep electronic medical records at all, it’s important that each of your doctors writes up a synopsis of your medical history – a summary of those first 18 years – to hand off to your new team.
In 2011, the American Academy of Pediatrics issued a clinical report providing detailed guidance for physicians to support adolescents, including those with special healthcare needs, as they make this transition in care. The report called for a “medical home” – a coordinated system to address preventative, acute and chronic health care needs from birth through the transition to adulthood. The medical home approach is especially valuable in ensuring that issues once managed by parents and pediatricians don’t fall through the cracks when young people make the switch to adult care.
When my patients have their first visit with their adult primary care physician, my hope is that they’ll walk in and the doctor will say, “Dr. Thibodeaux talked to me about you. I’ve looked at your record and it sounds as if you have a few medical issues, but I’m very familiar with them. Let’s just go over these today.”
That would be the ideal introduction to a new adult medical home.
For more information on making the transition from pediatric to adult medical care, read the clinical report of the American Academy of Pediatrics, or visit the Got Transition website sponsored by the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health.