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Transitioning from Pediatric to Adult Care

Last updated: May 2021

The teen years are an important time for young people with sickle cell disease (SCD). During this period, teens with SCD must transition from pediatric healthcare to an adult care setting. This often requires help from families and caregivers so those with SCD get the medical, emotional, and educational support they need as they enter adulthood.

During the transition process, it is important for young adults to learn how to navigate the healthcare system and advocate for themselves. The transition period is a high-risk time for people with SCD. During the transition, young adults with SCD often experience interruptions in treatments, higher healthcare costs, and more frequent complications.1,2

Planning the transition early can help reduce the impact on young adults’ health. Talk to your doctor early about how to prepare your child to transition.

Differences between pediatric and adult healthcare

Children with SCD usually have their healthcare managed by parents or other caregivers. Caregivers will 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. This process is known as transition.3,4

During the transition process, young adults with SCD move their healthcare from a pediatric doctor to a doctor who treats adults. Unfortunately, there are fewer adult hematologists (doctors who treat blood diseases) than pediatric hematologists. This can make it difficult to find adult doctors with experience treating SCD.4,5

This means young adults with SCD must learn how to manage their own health during the transition. They must also learn how to advocate for themselves. This may be important when they need to educate doctors about SCD.3

Challenges in accessing healthcare

A major challenge of transitioning to adult care is getting access to quality care. There are many barriers to care for adults with SCD, including the effects of racial bias on healthcare quality. For example, doctors in the ER often label people with SCD as “drug seekers” when they come seeking pain relief.5

Barriers to accessing quality care for adults with SCD include:4,5

  • Mistreatment by ER doctors
  • Lack of knowledge about SCD by primary care doctors
  • Transportation to hematologists, clinics, or hospitals
  • Navigating insurance, especially after a job loss or transfer
  • Difficulty keeping jobs because of frequent pain crises

These barriers combine to cause worse health outcomes for adults with SCD. For example, adults with SCD may try to manage complications at home to avoid the ER. High healthcare costs may also reduce the use of healthcare systems. This can lead to poorer management of SCD complications.6

Planning the transition early

Teenagers with SCD should start planning the transition early. Preparing for the transition ahead of time can increase the chance of a successful transition. This can reduce interruptions in care and reduce the risk of complications during the transition.3

The transition to adult care happens based on age when people are around 18 years old. However, many teenagers feel unprepared for this responsibility by this age. It is important that they start receiving information and self-management skills long before adulthood. Some experts suggest starting the transition process at age 13.7,8

The transition also happens when young adults are facing other major life changes and milestones. This includes attending college, finding jobs, or moving to new locations. These life changes can make the transition time overwhelming. Preparing ahead of time with resources, knowledge, and support can help young adults overcome these challenges.3

Tips on transitioning

By transitioning to adult care, young people with SCD take more control of their own care. A successful transition includes things like sticking to treatment schedules and participating in preventative care.7

The best way to have a successful transition is to increase self-confidence. Young adults who are more confident in themselves are more likely to experience:3,7

  • Fewer symptoms
  • Less stress
  • Better health outcomes
  • Higher quality of life during the transition

Here are some more tips to make a successful transition:3,7

  • Start searching early for doctors who treat SCD or are knowledgeable about SCD
  • Be prepared to inform doctors about SCD and advocate for yourself
  • Join a support group of young people with SCD
  • Learn as much as possible about health insurance
  • Balance parental support with increasing your child’s independence

Some hospitals and clinics have transition assistance programs. These programs offer medical care along with emotional and educational support. A transition coordinator works with doctors, nurses, and social workers to create transition plans specific to each person’s needs.8

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