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Change is a natural part of growing up. If you have sickle cell disease (SCD), adulthood can come with a few extra adjustments.
Transitioning your healthcare may happen as other parts of your life change too. School, work, moving, and health insurance changes can all affect where you get medical care.
When you’re a child, parents, caregivers, and other adults handle communication with your doctors. They may schedule appointments, manage your treatment, and handle paperwork. As you become an adult, you’ll gradually learn to manage these aspects of your care yourself.
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Childhood clinics are often set up so specialists and support services work as a team. Moving into adult care may mean finding new healthcare providers and making sure your pediatric and adult care teams communicate and share information. This is part of a process called care coordination.
It can be exciting to take more responsibility for your own well-being. It can also feel overwhelming, especially if you don’t know what to expect. Here’s what to keep in mind as you transition from pediatric care to adult care with sickle cell disease.
Becoming an adult doesn’t happen overnight. However, you may eventually “age out” of your pediatrician’s office. If you’re covered by a parent’s health insurance plan, you can generally stay on it until age 26.
Plan ahead to make sure your support systems don’t disappear. It’s best to start researching your next steps before your pediatric care or current health insurance coverage ends.
As you get older, you’ll start taking more ownership of your care. This may mean discussing your health directly with your healthcare provider rather than having a parent or caregiver take the lead during appointments.
Over time, you’ll take on more responsibility for communicating with your doctor’s office, describing your symptoms, requesting medication refills, and keeping track of your appointments and medical bills.
Staying organized can help. Get into the habit of keeping a calendar and setting reminders to stay on top of your care. You can also start a folder to organize medical documents.
Taking the lead on your medical care doesn’t mean you have to manage everything without support. You can still ask for help or guidance.
If you feel you have too much on your plate, reach out to a parent, caregiver, partner, relative, or trusted friend. They might help you find new providers, pick up your medications, or give you a ride to appointments.
Your health insurance company and your primary care doctor are also useful resources. They can help connect you with local services and explain what your health plan does and doesn’t cover.
People with sickle cell disease may take medications regularly. Some medications help prevent complications of SCD. Others help manage pain or other daily symptoms.
You’ll need to know details about your medications, such as:
When life gets busy, it can be easy to miss doses or run out of medication. Setting reminders, signing up for automatic refills, and knowing how to reach your doctor and pharmacy can help you stay on track.
Medical records are especially important when moving from pediatric to adult care. Before leaving pediatric care, ask how your medical information will be transferred to your new care team.
Important information may include your medical history, current medications, treatment plans, laboratory results, vaccination records, imaging studies, and past hospitalizations.
You can also keep a personal record of key health information. Knowing the names and contact information of your hematologist, primary care doctor, and pharmacy can make it easier to bring new providers up to speed.
Whether you’re heading to college, a job, or a training program, your usual routines are likely to change.
Moving to a different city or state may mean you’ll need a different hematologist. A new schedule can also make it harder to keep appointments. After all, it’s not always easy to talk with your boss or a professor about time off for medical care.
Before a major change, you should consider whether your new location has the SCD resources you’ll need. Look for a sickle cell specialist or other healthcare professional, and find out where you can get emergency care if needed.
If you’re going to college, find out what health services are available through the school. You can also research resources in the surrounding community.
Insurance coverage may change around the same time as other major life transitions.
You may lose coverage through a parent or a government health insurance program. You may also get employer-sponsored insurance, enroll in a student health plan, or qualify for a different type of coverage.
Changes in insurance can affect which hematologists, hospitals, pharmacies, medications, and other services are covered. Before choosing a plan, check whether it covers your healthcare providers, medications, and other SCD care you need. Also check what you may have to pay out of pocket.
Consider speaking with an insurance agent, who can help you compare coverage options based on your situation.
Entering a new stage of life can be emotional for you, your family, and the people who helped manage your care as a child.
Parents and caregivers who have spent years coordinating care may need to gradually step back as you take on more responsibility. These adjustments can take time and understanding.
For example, a parent may worry that you’ll miss an appointment or forget your medications. Seeing you learn to manage more of your care on your own may help build their trust.
Have honest conversations about the role you want your caregivers to play as you get older. If their involvement feels like too much, talk with them about the kind of support you need.
Try to stay respectful and show appreciation for what they’ve given you. A social worker or family counselor may also be able to help with difficult conversations about roles and boundaries.
One of the most important goals of a transition plan is to stay connected to health services without disruptions in care.
Gaps can happen if a pediatric provider assumes your adult appointment has been arranged. A prescription may expire during a move, or your insurance may change before you have a chance to understand your new coverage.
It’s important to avoid delays between pediatric and adult care. One study found that young adults with SCD who had a gap of more than six months between pediatric and adult care were about twice as likely to be hospitalized as those whose gap was less than two months.
Even if you’ve moved on from pediatric care, it’s OK to reach out to your past providers. They may be able to help with the transition until you’re fully set up with adult care.
Transitioning to adult sickle cell disease care is a process, not a single event. Some people are ready to take on most healthcare responsibilities quickly. Others need more time and support to make the change gradually.
Start the conversation early. Learn about your condition and how it’s managed. Planning for the transition can begin as early as ages 12 to 14.
Ask your pediatric doctor what to expect during the transition of care. If you’re already seeing adult providers, ask questions about how to stay organized and who to contact when you need help.
If you’re a caregiver, talk openly with your adolescent or young adult and their healthcare team about how your role may change. Find out how you can provide support while stepping back.
With preparation, communication, and some support, you can build the skills you need to transition from pediatric to adult care confidently.
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