Welcome back! We are in the midst of our three-part series about helping teens transition to receiving health care as adults.
In our last post, we discussed what transition is and reviewed some cases to consider why transition should be a part of every teen's health care. This week, we'll consider how and when transition actually happens. For practical purposes, we'll focus on what teens and families can do in preparing for this process, but it's also important to acknowledge that transition should be a team effort between the family, the teen, and all of the health care providers involved. For some folks, that may be one or two providers, but it might involve many more than that (and may extend to folks in legal and school arenas as well) depending on a person's health history. Don't forget to check out next week's post for more information about additional tips to facilitate a smooth transition for teens with complex medical issues! To help demonstrate some of the things that we'll be talking about, let's take one of our cases from last week and rewind a bit.
Remember Jakiyah? If we take a step back to when she was younger, we can imagine how thinking about transition might have helped avoid confusion, frustration, and delays of care. As you may remember, Jakiyah was born with a congenital heart condition called Tetralogy of Fallot. She had one heart surgery soon after she was diagnosed and another a few years later. Since her second repair, she has been healthy and has not had any restrictions on her activity. She sees her pediatric cardiologist twice yearly and sees her pediatrician once yearly for check-ups with a few additional visits to monitor her asthma.*
For our scenario today, we'll imagine that Jakiyah is 12 years old and healthy with well-controlled asthma. Though Jakiyah has a rare medical condition, she only sees one specialist now and does not have significant restrictions on her activity, so we'll use her as an example of someone with only one or two providers involved.
When health care providers talk about transition, they talk about "six core elements" of a successful transition. These vary slightly from the provider to patient perspective, but in general you can consider these phases/steps of transition for an adolescent:
Discovering your provider's approach to transition
Tracking your own health information
Preparing to take a larger role in your health care
Planning for health care as an adult
Transferring to adult providers, if necessary, and assuming full responsibility for your care
Providing feedback on the transition process to providers
Here's a general timeline about when these things should happen. It's important to notice, however, that most of these things are going to be processes that continue to unfold over time. Let's consider what this really looks like, using Jakiyah's experience to guide us.
1. Discovering your provider's approach to transition (Starts around age 12)
This may seem to be the most ambiguous, but this is where the partnership with your provider comes in. A provider's approach to transition includes multiple elements, including when they start meeting with adolescents individually (without parents or guardians for at least part of the visit) and what their plan or policy is for facilitating an adolescent's transition to adult care over time.
In Jakiyah's case, her pediatrician has offered to do the exam with her parents out of the room for the last two years. At this 12-year appointment, her pediatrician asks her parents to step out for a few minutes to see if Jakiyah has other concerns that she wants to talk about, to ask about risk behaviors, and to continue to assess what Jakiyah knows about her health history. When her parents come back into the room, they ask the pediatrician what they need to think about as Jakiyah moves through her teenage years, and her pediatrician shares their office's transition plan (like this one). The pediatrician states that she sees patients into their early 20s, but encourages Jakiyah and her family to talk to her pediatric cardiologist about transition. When Jakiyah goes to her cardiology visit, she learns that the pediatric cardiologist helps to transition care to an adult provider when patients are 18 and also has a transition policy for the process.
2. Tracking — and understanding — a teen's own health information (Starts at age 12-16)
This is the process of helping teens understand their health and history. There are model health summaries (like this one or this one) that can help with this and are great tools to facilitate family conversations about an adolescent's health. Families can also let teens start to do the talking while they are being checked in at registration and for visits. All youth that have emergency medications should have a plan for communicating this to other people. Depending on that person's age and cognitive ability, this may include knowing an emergency plan or knowing the name and location of an emergency medication or it might be wearing a medical alert bracelet with key information listed.
Jakiyah's parents sat down with her before her pediatric cardiology appointment and reviewed what Jakiyah knew about her heart condition. Since her pediatrician had also discussed this with Jakiyah at her 12-year appointment, she had a good understanding of her surgeries, but still had a lot of questions that she was able to write down with her parents to talk to her cardiologist about. Jakiyah also started carrying her "as needed" inhaler for asthma on her own at school this year (instead of having it stored at the nurse's office). Since she's learning more about this medicine, her parents let her answer questions about her medication when she checked in for her cardiology visits and, when she was asked about allergies, reminded her that she has a penicillin allergy as well.
3. Preparing a teen to take a larger role in their health care (Starts at ages 14-16)
This is a really an extension of the last step, but emphasizes that teaching adolescents how to manage their health involves practice. This process includes encouraging teens to start to make their own appointments and refill their own medications. There are skills checklists to work through, and talking to your primary care provider about skills related to particular medical conditions can be helpful as well. Learning (and often having a written copy of) family history of medical issues is an important part of this process.
Jakiyah started to make her own appointments when she got her driver's license at age 16. Because she had been checking in at registration and knew her medications and allergies, she felt confident going to some appointments on her own, but also made sure that her parents were available by phone if she needed their consent for something (like vaccines) or was asked questions that she did not know the answer to.
4. Preparing for health care as an adult (Starts at age 16)
You won't be surprised to hear that this is more complicated than just finding another provider to switch to. Here are some of the primary things in health care that change when a person turns 18:
Parent or guardian consent is no longer required for health care decisions/treatment (unless there are particular plans to continue guardianship — we'll talk about this next time)
Parents and guardians usually do not have access to the adolescent's health information, including not being able to call and ask questions about health care or prescriptions unless there is particular documentation signed by the adolescent on file. If an adolescent wants their parent or guardian to have access, they should ask their office what their policies are and what forms need to be completed.
Health insurance can change at age 18 or 19, particularly if health insurance is funded through your state's Medicaid program. This can vary by state and can get pretty complicated, but is hugely important to make sure that there are no gaps in health care! Here's a basic reference to help make sure that you understand your insurance.
Just the process of transitioning to an adult provider takes a fair amount of preparation, so managing all of these changes together can be a big shift. When preparing for a change to adult providers, it's important to consider that finding the right fit is important and that it can take a while to schedule an appointment with a new provider. It can be helpful to ask pediatric specialists or primary care providers for their recommendations about adult providers — especially if a person particular health conditions — and to consider whether having a "meet and gree" visit would help in making sure that the new provider and clinic will meet the adolescent's needs.
Here are a few questions that a teen ready for transition can ask a new provider. At age 16, Jakiyah got a list of adult cardiologists that would be comfortable managing her condition, but was not sure where she would be for college. She talked to her pediatric cardiologist and pediatrician about where her cardiologist should be located, and together they decided that she should have a cardiologist in her university town but would continue to see her pediatrician into her early 20s. When she chose her university, she sent a message to her pediatric cardiologist, who recommended one to two adult cardiologists in the area. Jakiyah was able to call the cardiology offices four to five months ahead of her college start date to ask a few questions and make sure that her insurance — which was still under her parents — would cover her care for these providers. She was able to make an appointment for a few days before her classes would start because she had planned in advance.
5. Transition — Making the change! (Ages 18-22)
If steps one through four have gone smoothly, often step five is a piece of cake, and focuses on establishing care with a new adult provider and completing paperwork to make sure that the new adult providers have access to previous records. But if steps one through four have not happened or have not gone well, the transition can be chaos, and sometimes might even lead to delays in care (for months or years!). That being said, steps one through four are still important, so consider these parts of helping a teen transition even if the transition is happening at the last minute. Seeing an adult provider is one thing, but can be frustrating and overwhelming if the young adult does not understanding their medications or feels that the new provider is putting together a treatment plan from scratch.
Jakiyah saw her pediatrician a few weeks before she went to college, and they reviewed her health summary to make sure that it was up-to-date. She arrived on campus a few days before classes and had a little extra time to figure out the bus system to get to her cardiology appointment. Her mother, who was helping her move into her dorm room, was able to come with Jakiyah for the first appointment. Jakiyah's new cardiologist asked to see Jakiyah every four months during the first year of college for slightly closer monitoring, but thought that they'd be able to return to a twice yearly schedule after that if everything was going well. It took a few visits to establish how records would be sent back and forth between Jakiyah's primary care pediatrician and her cardiologist, but Jakiyah and her provider worked together to create a system that would keep everyone informed.
6. Providing feedback on the process to providers (Any age)
Providing feedback is meant to make sure that the transition process gets better and better for patients over time. Whether or not a clinic has a formal process for collecting feedback, it's critical that providers hear what went well and what was difficult in the process.
Jakiyah, for example, talked to her pediatrician about the difficulties in setting up a communication plan with her adult cardiologist, and her pediatrician adapted her transition policy to include communication plans in anticipation of these needs for future patients. Jakiyah's transition this time around probably seems a little rosy, but hopefully highlights how preparation on the part of a teen, family, and provider can help create a smooth transition that supports a teen taking charge of their health and avoids frustration and gaps in care.
Tons of great info at gottransition.org!
There are often local transition resources; ours in Wisconsin is http://www.healthtransitionwi.org/, which can help families locate local experts in transition that can help with the process.