Moving from pediatric to adult sickle cell care: How to navigate the transition
Note: Mary Shaniqua lives with sickle cell disease and is a columnist for Sickle Cell Disease News.Â
Growing up, I had excellent pediatric hematology care. It was consistent, I had a trusted specialist nurse, frequent appointments and testing, and so on.
Everything changed when I transitioned to the adult clinic.
Before I could even adjust, I was hospitalized during a severe sickle cell crisis. To say it was a culture shock would be an understatement. The ward was no longer the playful, friendly hospital I was familiar with, and I felt pressured to conduct myself as an adult despite going through such a traumatic time. On top of that, my parents could only be with me during allotted visiting hours.
Nobody had prepared me for this shift in environment or for what was now expected of me. And nobody had told me the part that turned out to matter most: In pediatrics, my mother was standing beside me, and she was what made my pain believable to doubting doctors. Without her, I was often treated like I was just a teenager in severe pain whose vital signs looked fine.
Having made my mistakes, I don’t want others to make the same ones when transitioning from pediatric to adult sickle cell care. Here’s what I wish my family and I had known, and the practical steps you can take to help your child avoid the same challenges.
Why the shift to adult sickle cell care is a critical barrier
The transition from pediatric to adult care is one of the most vulnerable seasons in sickle cell healthcare, and not only emotionally.
When I look back to my early adulthood years, I had so many hospital admissions every time I underwent a major life change, such as moving or starting a new school year, and of course, when moving to adult hematology care. In retrospect, I realize that it wasn’t merely stress that was a trigger, but also that I was undergoing gaps in care.
This makes sense when you think about it: Patients are expected to become more medically independent, yet that often coincides with other confusing life changes. Two decades of sickling can also begin to show more in the late teens and 20s — in the kidneys, the eyes, the hips — which is when routine surveillance tends to lapse for many clinics. Pediatric care often follows a more standardized schedule, while adult follow-up can be less automatic unless the team and patient keep it on track.
So ask. Before you leave, have the pediatric team write down which screenings your child has had and when each one is next due, and hand that list to the adult team on day one.
Empowering children to take ownership of their health
I highly recommend having children lead part of each pediatric appointment while you’re still there for support. This gives them a safe opportunity to practice speaking with healthcare providers before they’re expected to do it independently. Between appointments, encourage them to keep a running list of questions, and then let them do the asking.
The goal isn’t for you to step away overnight, and the process starts long before the official transition.
At each appointment, hand over one new skill:
- scheduling the next appointment
- requesting a medication refill
- saying their genotype out loud without looking it up
- explaining what each of their medications is for
- describing their pain as a baseline number and a current number, so the gap does the arguing
- asking one question directly to the doctor
Keep your own symptom tracker running alongside theirs for a while, so nothing is missed while the habit is still forming.
If follow-up actions are needed after an appointment, delegate them, and try your best not to micromanage! If they drop the ball, remember that learning through all means is precisely what this period is for.
But there is a line worth drawing: Administrative slips are teaching moments, medication slips are not. A vaccination appointment booked a week late is a lesson. A missed repeat prescription is not something to let run. So, step in as early as you must when you see a health-threatening problem.
When to start planning the healthcare transition
In my advocacy work with parents of children with sickle cell disease, I always advise them to begin preparing at about age 13. If you hand over a new responsibility at each clinic visit, and you have 3-4 annual visits, that should mean you’ve handed over most key tasks while still supervising your child.
(I transitioned to an adult clinic at 16 because I grew up in the U.K. In the U.S., the handover usually lands somewhere between ages 18 and 22, so ask your team for their exact cutoff.)
It could be good to make a roadmap listing all the skills you want to teach, then do the math to see how many appointments it would take to learn them.
This is not work for the parents alone; it requires a proactive and involved medical team, too. I would recommend working collaboratively with your child’s team on a long-term plan, determined over several years rather than decided all at once.
Tailor the pace to your child: One who is a bit more mature can move faster; one who learns differently may need a slower route, or a different one altogether.
Arrange a warm handoff and tour
One of the most valuable things your pediatric team can do is speak directly with the adult provider. Rather than relying solely on medical records, ask whether your child’s pediatric hematologist can call the adult physician before the first appointment. Ask for three things to be covered with that provider: which medications have already failed, what the pain plan is, and how your child presents in crisis.
It is not just the service that changes when transitioning from pediatric to adult sickle cell care. The physical setting will be different, too — and the comfort of knowing a space can’t be underestimated. Visit and ask for a guided walk-around of both the outpatient and inpatient areas. This minimizes the shock of changing settings abruptly and gives your child the chance to understand how the new clinic operates.
Check whether your hospital offers a buddy scheme or another transition initiative. These give your child a chance to meet other sickle cell patients and the adult staff in a parent-free zone, where children about to become adults can ask what they actually want to know.
Prepare release forms
Transition is not only for the child/patient but also for the family. As far as the hospital is concerned, you are moving from carer and main point of contact to visitor. The overnight stays, being the one who answers every question from medical personnel — that changes, and you need to be prepared for it.
Note that once your child turns 18 in the U.S., you no longer have automatic access to any medical information, and clinicians cannot update you without permission on file. If your child wants you involved, get the information release signed while you are still in pediatrics, and make sure copies are held by both the adult clinic and the hospital that admits your child in a crisis.
Ask where it is stored at the clinic or office, too, because if there’s an emergency and you need to help with making decisions, that release needs to be findable at 3 a.m. by someone who has never met you.
To understand how your role will change in practice, ask to meet with the adult clinic coordinator.
Have a healthcare transition checklist
This checklist, broken down into two parts, may be helpful for you to reference when your child is moving to adult hematology and making the transition toward taking charge of healthcare decisions.
Choose the adult hematology team
Ask your pediatric provider for referrals to adult hematologists who regularly care for patients with sickle cell disease. Whenever possible:
- Schedule the first adult appointment before the final pediatric visit.
- Confirm your child’s insurance will cover the new provider, and find out when your child ages off pediatric coverage.
- Learn how prescriptions transfer, and who now renews any medication.
- Identify which hospital your child should go to during a pain crisis, and confirm it has your child’s individual pain plan.
Before leaving pediatric care
- Begin handing over responsibilities to your child at each appointment, starting well in advance.
- Find out your hospital’s transition protocol and sign your child up for any workshops or tours.
- Request medical summary and screening records.
- Select an adult hematologist.
- Schedule the first adult appointment.
- Confirm insurance coverage.
- Get your information release signed.
- Arrange for a warm handoff.
Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
