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.
