Transition: Helping Teens Manage Their Health Care

Teen Health Care TransitionI’m going to let you all in on a little secret: if you want to know what’s hot in the world of adolescent medicine, it’s transition. Seriously. Everyone is talking about it. There are whole conferences devoted to it. Journal articles written about it. Task forces formed to improve it.

But somehow, despite all of the hype in the world of medical professionals, the conversation – not to mention the concept – has not always reached patients and families. You may even be wondering what the term “transition” means in this case… and you would not be the only one.

I’ll tell you – in just a second. First, I’ll let you know that this is SUCH a big deal that we’re going to devote three – yes, three – blog posts to transition over the next month or two to make sure that we cover the basics of what is important.

With that, let’s get started…

Transitions in Teen Health: What It Is and Why It Matters… to Everyone

Transition is, simply put, the process of getting ready for health care as an adult. Sounds simple, doesn’t it? Especially given that this means that transition applies to pretty much every teen out there.

With such a simple definition, this might seems like transition is a simple process. Not so! Even though becoming an adult happens to everyone just by having time march forward, there is a lot more that goes into transition than just letting time pass. Consider these examples and some of the questions posed about how this person’s transition to adulthood management of their health:

Alex

Alex is a 20-year-old generally healthy person that works in construction several states away from home. One night, Alex awakes suddenly with abdominal pain and vomiting, which gets worse over the next few hours. Alex’s roommate drives Alex to the local Emergency Department, where they diagnose Alex with appendicitis. When they are preparing Alex for surgery, the anesthesiologist asks if there is any family history of reaction to anesthesia. Alex’s father had some sort of complication during his hernia surgery a couple of years ago, but Alex does not know what it was and Alex’s parents are not available by phone.

How could Alex have been better prepared for this emergency situation?

Whose responsibility is it to make sure that a young adult knows their family history? The young adult? The parent or guardian? The primary care doctor?

 

Jakiyah

Jakiyah is an 18-year-old high school senior. As a child, Jakiyah was diagnosed with a serious heart condition called Tetralogy of Fallot and had two surgeries to have this repaired. Since her second repair, she has been healthy and has not had any restrictions on her activity. She has seen her cardiologist at least twice yearly for her entire life. At this visit, her cardiologist tells her that Jakiyah needs to transition to an adult cardiologist, but says that they don’t know any cardiologists in the town where Jakiyah will be attending college. Jakiyah had planned to continue seeing her current cardiologist when she was home on break and feels like she does not know how to start with a new provider. After starting school, she keeps putting off scheduling with an adult cardiologist because she feels overwhelmed to by the process.

How might this delay in care affect Jakiyah’s health?

How could this transition of providers have gone more smoothly?

 

Lee

Lee is a 16-year-old that is interested in starting contraception to prevent pregnancy. She does not want her parents to know that she is sexually active. She makes an appointment at Planned Parenthood, where she and the provider decide that the Ortho Evra patch would be the best option for Lee. The provider wants to know about Lee’s medications and family history when considering prescribing this medication. Lee knows that she takes a medication for depression and also takes a couple of supplements that her aunt recommended, but she does not know the name or dose of these medications. She does not know about her family’s health history apart from her brother’s asthma. Lee does not feel comfortable asking her mother these questions as she thinks that it will raise suspicion about her motives for asking these questions.

When should teens start to learn about their medications? Health histories? Family histories?

As you can see, there’s a lot more that goes into transition than just getting older. A successful transition happens over time – usually years – and involves the adolescent, the family, and any healthcare providers involved in the teen’s ongoing care. It’s a process that always involves education and often involves changing from pediatric to adult providers.

But I see a provider that sees adults AND kids… Doesn’t that get me out of this transition thing?

Nope. As you can see with the cases of Alex and Lee, transition is about a lot more than changing from pediatric to adult providers. If you see a family medicine or medicine/pediatrics provider, they may see a patient from childhood into adulthood, but there’s still a huge transition process to help that teen move into the role of fully understanding and managing their own health.

OK, OK, I get it… So, how do we make this happen?

I’m so glad that you asked! That’s what this series is all about. Next, we’ll talk about the “When”s and “How”s of successful transitions, and then we’ll focus specifically on some of the things to consider for adolescents with complex medical issues.

What?! But now I’m all amped up and can’t wait to learn more…

Don’t worry! If you just cannot wait, here are some great resources that we’ll reference throughout where you can get more information about the nuts and bolts of successful healthcare transitions. We’ll talk about some of the details in the upcoming posts. If you have questions, post them in the comments below and we’ll try to address them if they’re applicable to a large audience.

  • www.gottransition.org: A website developed by the Center for Health Care Transition Improvement, a cooperative agreement between the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health. Info available for adolescents, families, and providers.
  • In Wisconsin, there’s a collaboration coordinated by the Waisman Center – UW Madison that has worked to develop more transition-related resources. Some of them are Wisconsin-specific, but many are not! Check it out: www.healthtransitionwi.org

Until next time…

One comment

  • It would be great if Children’s Hospitals, UW or elsewhere put together resource panels/groups perhaps of former Peds pts. who’ve been through the transition process successfully from Peds to Adult Medical Care. As a Patient with complex medical issues whose made this transition myself and had to take a crash course (15+ yrs ago when very little was studied or thought about this issues) in figuring out better drs., speaking for myself and being my own advocate (although I was well informed of my medical issues) I know exactly what Patients can go through and what can be done to make this a little easier.
    These days there are some programs such as the Adult Congenital Heart Programs and at UW-AFCH the ACHD Program for Peds Cardiac Pts. that help transition pts or in the case of Peds Neurosurgery pts. at UW-AFCH can con’t to see the Peds Neurosurgeons but this is not the case at many hospitals. Often to when a Patient has a very complex, very involved disorder Specialists can end up being spread at numerous different Hospitals and Health Systems and often in different states and there isn’t support to help pts. really figure this out, figure out how to make it work. Some of us are able to but many won’t have the resources or the drive to do so.
    Parents should be encouraged (and drs to!) to inform their kids/teens and other drs. to to help educate Patients on what exactly it is they have, why treatment or f/up is important and why it’s important they con’t to receive care even after a surgery/repair is done (Peds cardiac care for instance) as the issue is treated but rarely cured.

    If a program where started where newer pts who’ve transitioned out successfully where used in a way to help younger pts reaching the ‘transition’ age then compliance may be higher. Care and health outcomes as the coming adults get older might be better and both sides may feel like they have someone they can lean on.
    Just a few thoughts from a Patient whose lived this and lives it every day!

    Erica
    http://www.rarelydefined.blogspot.com

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