Teens with Sickle Cell Disease

More than 90 percent of children with sickle cell disease (SCD) in the United States survive to adulthood. As children with SCD mature into adulthood, they begin to manage their own healthcare. This transition can be a high-risk period because disease complications often become worse by pauses in care. Also, few doctors are familiar with treating SCD in adults.

Managing SCD in teens is also challenging because of how it affects their development. The disease may affect their social relationships, self-concept, and school experiences. Many strategies and resources can help support teens through these transitions.

What is the transition from pediatric care to adult care?

Young children with SCD usually have parents or caregivers to schedule appointments, manage treatments, and make sure they have a healthy diet and enough sleep. As children age, this responsibility shifts to themselves. At the same time, healthcare shifts from a pediatric doctor to an adult doctor.1

Delays or pauses in healthcare often worsen complications during this time. Hospitalizations, emergency room visits, and mortality rates increase for people with SCD after 18 years old.2

A major challenge is that few doctors have specialized experience treating adults with SCD. Many teenagers also have poor interactions with doctors during hospital visits. Doctors often do not believe children with SCD, who are mostly Black, about their pain. Doctors may mistakenly label them as “drug seekers” and undertreat their pain crises. This can lead them to avoid the healthcare system.2

Another challenge is lack of readiness. Transition of care is based on age, not preparedness. Many teenagers feel they are not prepared because they lack the information or skills to manage their own care.2

How can I help make this transition go smoothly?

A successful transition can help young people with SCD actively participate in their healthcare. A transition is successful if the teenager:2

  • Adheres to their therapy schedule
  • Has the same disease severity as in pediatric care
  • Has no unexpected complications
  • Participates in preventive care
  • Achieves life milestones (education, employment, etc.)

A major factor for success is their level of self-efficacy, or confidence in their ability to achieve a goal. Higher self-efficacy is linked to:2

  • Fewer symptoms
  • Less stress
  • Improved health outcomes
  • Better quality of life

Caregivers should also assess teenagers for their readiness so that the transition works for them. Some parts of readiness may include:2

  • Knowledge of SCD
  • Self-management skills
  • Beliefs and expectations
  • Goals and motivation
  • Communication
  • Emotional status

Early preparation can help teens successfully transition to adult care. Ways to prepare include:1

  • Look for a doctor who is experienced treating adults with SCD
  • Be prepared to educate doctors who are not familiar with SCD
  • Join a support group for young people
  • Learn about how health insurance policies affect care
  • Enroll in a transitional program with doctors who can treat children and adults (often offered at large university hospitals)

How does sickle cell disease affect students?

SCD can affect teens’ ability to concentrate in school because of fatigue. It can lead to frequent absences because of symptoms, hospital visits, or doctor’s appointments.

Many students feel their teachers lack empathy and knowledge of SCD. Teachers often view their self-care practices as disruptive to classroom routines. Telling teachers about the condition often does not improve experiences. This often causes students to keep their condition secret to prevent being singled out.2

Parents may meet with teachers to discuss individual care plans. Teachers, nurses, and administrators can support students with SCD by:3

  • Ensuring access to water
  • Allowing frequent bathroom breaks
  • Allowing accommodations during extreme temperatures and during physical education
  • Taking special care of injuries
  • Watching for signs of stroke
  • Being aware of their emotional well-being
  • Maintaining open communication with parents

How does it affect teens’ emotional well-being?

SCD can affect teens’ emotional, social, and physical development. Teenagers with SCD often have lower self-esteem because of delayed growth and visible symptoms, like jaundice and leg ulcers.4

Many teenagers with SCD strive for a “normal” life. This can lead to positive behaviors, like adherence to treatment, self-care, and participation in shared interests with peers. However, it can also cause some teenagers to downplay limitations, resist treatments, or participate in risky behaviors like drinking or drug use. Teenagers with SCD also have a higher risk for symptoms like:4

Where can teens with SCD find support?

Family is usually the main source of support, motivation, and comfort. In families with multiple children with SCD, siblings often support each other. Teenagers benefit from friendships with other children with SCD. Formal peer support groups can help teens with SCD make friends, learn new skills, share experiences, and support others.4

Pets can also be a source of support. Taking responsibility for a pet can increase confidence in their ability to take care of themselves. Spirituality, religion, creative activities, volunteering, and humor can also be effective coping strategies for adolescents with SCD.4

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Written by: Matthew Zajac | Last reviewed: January 2021