Stories about: Medical transitioning

Teens: time to take more responsibility for your health

Claire McCarthy, MD

There are milestones of independence that all teens look forward to, like getting a driver’s license, having a job or going to college.

Being responsible for your own health care isn’t so much on that list.

But the reality is that once you turn 18, you become legally responsible.  Literally. Once you are 18, your parents can’t make health decisions for you, or even get information from your doctor, without your consent. Now, you might be willing to give that consent (especially if it means less work for you!), but the sooner you learn to take charge and responsibility, the better—because before you know it, you really will have to do it by yourself.

There are a few steps you can take to get yourself started. You can and should start these steps by the time you start high school, at the latest.

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Failure to follow medication routines is a fatal mistake for too many teenage heart transplant patients

It’s no secret that when it comes to making safe health choices many teenagers don’t have the best track record. But according to a study from Boston Children’s Hospital, this is especially true—and dangerous—among adolescents who have had a heart transplant.

After receiving an organ transplant, patients must follow a strict medication routine to keep themselves healthy. Failure to do so, known as non-adherence (NA), can result in life-threatening illness. While doctors have long known that adherence is a problem among adolescent patients, just how serious the problem was on a national level wasn’t clear until recently, when a team from Boston Children’s researched NA among all adolescents who received a heart transplant over an eight-year period.

Unfortunately, the numbers they uncovered were fairly shocking.

“Everyone in the medical community knows non-adherence is a problem for many adolescent patients, but before this study, I don’t think we truly understood just how serious an issue it is,” says senior author Christopher Almond, MD, MPH, a cardiologist in the Heart Transplant Program at Boston Children’s. “Seeing the data on a national scale makes it very clear how many kids are dying, because they aren’t following their medication routines. The worst part is, these deaths are entirely preventable.” 

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Time for transition? We can help.

Kitty O'Hare, MD

By Kitty O’Hare, MD, coordinator of Transition Medicine at Boston Children’s Hospital’s Martha Eliot Health Center.

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?”  

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Setting the stage for medical independence

By Kitty O’Hare, MD, coordinator of Transition Medicine at Martha Eliot Health Center

I see this story play out over and over again in my clinic:

A 15-year-old comes to the office for an asthma visit. The teen is glued to their cell phone, iPad or PSP from the moment they enter the exam room. Every time the provider asks about medication use or frequency of symptoms, the parent jumps right in with a ready answer while the teen stays in their electronic universe. Even if the provider tries to engage the teen directly, only one-word answers or grunts are given. By the end of the visit it is obvious how much (or little) the parent knows about asthma, but it is less obvious how much the patient knows about their disease.

Parents are wonderful health advocates for their children. I tell parents that they know their child much better than I ever could. Parents make all kinds of decisions for their children every day, but unlike deciding on pizza vs. chicken fingers for dinner, healthcare decisions literally can be matters of life or death. So it is very hard for parents to hand over control of healthcare to their children.  But it is important for children, teens especially, to learn to take control of their health. Here is how parents can help:

Step 1: Teach children to understand their bodies.

This is a key area of child development. We teach toddlers to name their “head, shoulders, knees and toes,” but sometimes the learning stops there. As children grow, it is important to reinforce the proper names for the parts of the body as well as some basics of their function. Very few people can describe the inner workings of the cardiovascular system, but even a small child can learn that the heart pumps blood throughout the body, or that everyone has two lungs. Parents can teach children how everyday decisions affect their body, for example, that drinking milk gives you calcium and Vitamin D for strong bones and strong teeth.

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