Transitioning from Pediatric to Adult Sickle Cell Care
The life of a teenager is one of massive growth and change. From getting a driver’s license or graduating from high school, to getting a first job, a LOT of major life events happen during this period of life. When you live with sickle cell disease, a major transition as a teen/young adult, is moving your sickle care from a pediatric program to an adult program. Ideally, this is not an abrupt change, but a gradual shift to where you ultimately receive your sickle cell care. At Seattle Children’s, we try to start this conversation around the age of 13. By age 18, a young person with sickle cell can start coming to appointments on their own. By the 21st birthday, sickle care needs to be fully transitioned into the adult program. In the greater Seattle area, Odessa Brown Children’s Clinic/Seattle Children’s and the Seattle Cancer Care Alliance work very closely to support our patients through this transition.
So, if you are a teen or young adult with sickle cell, what do you need to know to be ready to transition and be more independent in your care? First, understanding sickle cell basics is essential. Do you know the following? If not, discuss with your current provider so you can be up to date and have the knowledge to make the right decisions for your health.
- What is your genotype? What does this mean if you want to have biological children in the future?
- What things can trigger sickle cell pain?
- What is your pain plan?
- What should you do if you have a fever? On that note, how high does you temperature have to be to be considered a “fever?” Do you have a thermometer at home?
- What are other medical emergencies to be aware of if you have sickle cell disease?
You should think about how you will move to a different healthcare system and medical providers; where will you go? How will all of your important information be shared between systems? Again, these are things you should discuss and plan with your pediatric provider.
- What, if any, sickle cell complications have you had in your lifetime? What are the most important aspects of how sickle cell has affected you that your provider should know?
- When and how would you like this information to be communicated to the new provider? Would you like there to be a direct communication between providers in the handoff?
- Who will be your primary care provider?
- Are there any other specialists, aside from your sickle cell provider, that you also need to see? Neurology? Pulmonology?
- How often should you see your provider? How do you make an appointment?
- Where will you go if you have a medical emergency? How will you get there?
Day-to-day care matters so much when you live with sickle cell disease. Individuals with sickle cell need to drink lots of water, dress warmly, get plenty of sleep, and eat a healthy diet. For those that take daily meds, medication management is another huge part of day-to-day care.
- Do you know all of your medications? Do you know why you take them and common side effects?
- How often do you remember to take your medications? It’s very easy to forget! Have you tried any medication reminder apps to help you track your medicine? There are numerous free apps for all smart phones. mymedschedule.com allows users to create their own printable medication chart with pictures of their pills, and the ability to set up text or email refill reminders.
- Speaking of refills, have you ever called in a refill before? How far in advance should you do this so you do not run out of medicine?
As you can see, there is a lot to know when it comes to your healthcare! For more information about transition, Seattle Children’s has a transition website that is very useful: https://cshcn.org/adolescent-transition/ . Please don’t ever hesitate to talk to your medical team about any questions or concerns. We are here to support you. Let’s start the conversation early to make sure the transition from pediatric to adult care happens smoothly!
Alix Dassler, ARNP
Seattle Children’s Comprehensive Sickle Cell Clinic