Transitioning Pediatric to Adult Care

When young people with sickle cell disease (SCD) transfer their health care from a pediatrician to a medical professional who treats adults, they learn to become more responsible for their health. This transition is part of their journey toward adulthood.
Young people with SCD need to prepare for their health care transition so that they can continue to receive adequate, regular care from an adult health care provider.

Responsibility During the Child’s Younger Years

During a child’s younger years, it is the responsibility of parents or other adult caregivers to manage the child’s health and health care needs. Parents or other adult caregivers should schedule doctor’s appointments, manage treatment schedules, and ensure that the child is eating properly and sleeping well to reduce the severity and occurrence of pain crises and other SCD-related health problems.
Teenage Boy

Responsibility During the Teenage Years

When a young person with SCD becomes a teenager, the responsibility shifts from the caregiver to the teen themselves. This process is known as the health care transition.
During the transition, teens and young adults with SCD no longer seek medical attention from a pediatrician (a doctor who treats children). Instead, they will go to a doctor who focuses on treating adults (an adult health care provider). These teens must learn how to work with their adult health care provider to prioritize and manage their health.

Tips to Prepare for the Health Care Transition

Look for a doctor who treats adults and is knowledgeable about SCD. Contact local SCD organizations for help finding a doctor who is trained to treat SCD.
If your health care provider is not very familiar with SCD and your health history, be prepared to educate them. Keep a record of your medical history and provide it to your new adult care provider.
Join a support group for young people with SCD who are also going through the transition. Connecting with others and sharing your experiences can make the process less daunting.
Research about health insurance options and learn how eligibility changes as you get older. These changes can affect the accessibility of health care services, treatment options, and timely care.

Overcoming the Challenges of Transition

Teens with SCD can feel overwhelmed during the health care transition period because it also coincides with major life changes and milestones as they mature into adulthood. Life changes, such as going to college, finding a job, or moving to a new location, can make it more difficult for teens with SCD to manage their transition. By being prepared with resources, knowledge, and support, teens with SCD can overcome these challenges and stay healthy during the transition.

Tips to Prepare for the Health Care Transition

Look for a doctor who treats adults and is knowledgeable about SCD. Contact local SCD organizations for help finding a doctor who is trained to treat SCD.
If your health care provider is not very familiar with SCD and your health history, be prepared to educate them. Keep a record of your medical history and provide it to your new adult care provider.
Join a support group for young people with SCD who are also going through the transition. Connecting with others and sharing your experiences can make the process less daunting.
Research about health insurance options and learn how eligibility changes as you get older. These changes can affect the accessibility of health care services, treatment options, and timely care.

Overcoming the Challenges of Transition

Teens with SCD can feel overwhelmed during the health care transition period because it also coincides with major life changes and milestones as they mature into adulthood. Life changes, such as going to college, finding a job, or moving to a new location, can make it more difficult for teens with SCD to manage their transition. By being prepared with resources, knowledge, and support, teens with SCD can overcome these challenges and stay healthy during the transition.