Transitioning from Pediatric to Adult Care

The teen years are an important time for young people with sickle cell disease (SCD). Nine out of 10 young people with sickle cell live into adulthood. This means they must make a change from pediatric to adult healthcare when they come of age. This process is known as transition.¹

Many young adults lack the self-management skills and medical knowledge they need to make this transition successful. Many need extra help from their caregivers and pediatric healthcare team during this time.¹

Why should I plan for this transition?

Young people with SCD need to learn how to navigate the healthcare system and advocate for themselves during this transition. It is a high-risk time for people with sickle cell. It is common for young adults with SCD to have:^1,2

• Interruptions in treatment
• Higher healthcare costs
• More frequent complications

Planning the transition early can help reduce the negative effects on a young person's health. Talk to your healthcare team about how to help your child make the move to adult care.

Differences between pediatric and adult healthcare

Usually, parents or other caregivers manage the healthcare of children with sickle cell. Caregivers schedule doctor’s appointments, manage treatments, and monitor diet and sleeping habits. As children become young adults, they must learn to take on these responsibilities themselves.^3,4

During the transition, young adults with SCD move their healthcare from a doctor who treats children to a doctor who treats adults. Unfortunately, there are fewer hematologists (doctors who treat blood diseases) who treat adults than those who treat children. This can make it hard to find doctors with experience treating sickle cell in adults.^3,4

Young adults with sickle cell must learn how to manage their own health and how to advocate for themselves. This becomes important when they need to educate doctors about SCD.³

Challenges in getting proper medical care

A major challenge in transitioning to adult care is finding high-quality care. There are many barriers to healthcare for adults with SCD, including racial bias. For example, emergency room (ER) doctors often label people with sickle cell as “drug seekers” when they come in during a pain crisis.^4-6

Other barriers to accessing quality care for adults with SCD include:^3,4

• Mistreatment, undertreatment, or bias from doctors about pain
• Lack of knowledge about SCD by primary care doctors
• Lack of transportation to hematologists, clinics, or hospitals
• Difficulty navigating insurance, especially after a job loss or transfer
• Difficulty keeping jobs due to frequent pain crises or hospital stays

These barriers often combine to cause worse health outcomes for adults with SCD. For example, adults with SCD may want to avoid the ER after being mistreated on earlier visits. So, they may try to manage complications at home. They also may avoid going to the doctor or hospital because of high healthcare costs. Going untreated can make SCD complications worse.⁵

Planning the transition early

Teenagers with SCD should begin the transition early. Preparing for the transition ahead of time can increase their chances of finding good adult healthcare. Preparation can reduce interruptions in care and reduce the risk of complications during this time of change.³

The transition to adult care happens around age 18. However, many young people feel overwhelmed if they have not begun to prepare for it earlier. It is important that they start getting information and learning self-management skills long before adulthood. Some experts suggest starting the transition process at age 13.^6,7

The transition also happens when young adults face other major life changes. These may include going to college, finding jobs, or moving to new places. These common life changes can make a healthcare transition feel overwhelming. Preparation with resources, knowledge, and support can help young adults overcome these challenges.³

Tips for transitioning

When moving to adult care, young people with sickle cell take more control of their own care. A successful transition includes sticking to treatment plans and keeping up with preventive care.⁷

The best way to have a successful transition is to increase a child's self-confidence. Young adults with SCD who are more confident in themselves are more likely to have:^3,6

 
Here are some more tips for young adults to make a successful transition:^3,6

• Start searching early for doctors who treat sickle cell or are knowledgeable about it
• Be prepared to inform doctors about SCD and advocate for yourself
• Keep a record of your medical history to share with new doctors
• Join a support group of young people with sickle cell
• Learn as much as possible about health insurance
• Balance parental support with increasing independence

There may be a sickle cell center near you that can provide full access to care. The National Alliance for Sickle Cell Centers provides a map of centers across the United States.

Some hospitals and clinics have transition assistance programs. These programs offer medical care along with emotional and educational support. They also may have a transition coordinator. This person works with doctors, nurses, and social workers to create transition plans specific to each person’s needs.⁷