September 2018: Healthcare Transitions for Youth with Sickle Cell Disease
Transitioning into the adult healthcare system can be challenging for adolescents with chronic diseases and disabilities—particularly for those whose conditions evolve over time. For example, the symptoms and major complications of sickle cell disease (SCD) can worsen over time and vary from person to person. In recognition of National Sickle Cell Awareness Month, this edition of the OAH Bulletin describes complications adolescents with SCD may experience and elements of a successful healthcare transition that can help them take charge of their health.
What is Sickle Cell Disease?
Sickle cell disease (SCD) is a group of inherited blood disorders caused by abnormal proteins in red blood cells. SCD is typically diagnosed at birth with a simple blood test. In the United States, SCD most commonly occurs among people of African descent—SCD occurs among about one in every 365 black or African-American births.
Complications Over Time
People with SCD begin to show signs of the disease around 4-5 months of age, and later experience complications such as infections, episodes of acute pain, and mild to severe anemia. Recent advances in medical care have significantly increased the likelihood of children with sickle cell disease surviving into adulthood. In the past, patients born with SCD had an average lifespan of 14 years, but today, most patients live into their forties and beyond. Despite improvements in medications and treatment, adolescents with SCD, much like adolescents with other chronic conditions, can have increased health complications. Major complications that occur in adolescence and adulthood include:
- Chronic, ongoing pain
- Pulmonary hypertension, or high blood pressure affecting arteries in the lungs and heart
- Leg ulcers
- Delayed puberty
To learn more about how SCD affects people’s lives, watch the HHS Office of Minority Health’s Sickle Cell Stories.
Treatment and Health Maintenance
People with SCD must have regular medical visits, screening tests, and evaluations throughout their lives. The only cure for SCD requires finding a closely matched donor for a blood and bone marrow transplant which can sometimes cause severe side effects. Several other treatment options, such as blood transfusions, can reduce the symptoms of SCD and prolong life.
While regular healthcare visits are important for the health of all adolescents, healthcare visits are a vital part of preventing complications for adolescents with sickle cell disease. Adolescents with SCD may have a higher need for using healthcare services as they transition to adult care. Adolescents with SCD face several barriers to transitioning into adult healthcare, including poor communication between pediatric and adult providers and lack of a formal transition of care plan or program.
Successful transitions into adult healthcare rely on collaboration among youth, family members, and healthcare professionals. The OAH website has several resources to support healthcare transitions. The resources below can help support effective transitions for adolescents with SCD:
- Healthy Living with Sickle Cell Disease
- 9 Tips to Living Well with SCD in College
- Real Stories from People Living with Sickle Cell Disease
- Stepping Up to Adult Care
- Sickle Cell Stories: Adrienne Shapiro
Spread the Word with These Posts
- New information from the HHS Office of Adolescent Health helps providers, parents, and caregivers ensure a successful healthcare transition as adolescents become young adults. https://bit.ly/2NpnKiK
- September is National Sickle Cell Disease Awareness Month. The Centers for Disease Control and Prevention offer information on how adolescents and young adults can live a healthy life and manage sickle cell disease: https://bit.ly/2Dgbj43
- Youth with chronic conditions like #sicklecell disease can have a harder time transitioning to adult #healthcare. @TeenHealthGov has new info on how to support them: https://bit.ly/2NpnKiK
- To manage their health, teens need to learn health insurance terms, words to describe their own health and family health history, & how to read and understand an explanation of benefits form. @TeenHealthGov has info your teen needs to know: https://bit.ly/2POHMjc
- For National Sickle Cell Disease Awareness Month, take the time to learn how adolescents with #sicklecell disease can take a more active role in managing their healthcare. https://bit.ly/2yNJPR6 via @CDC_NCBDDD
Content last reviewed on December 14, 2018