According to the Cooperative Study of Sickle Cell Disease (CSSCD), adults with Sickle Cell Disease (SCD) between the ages 25 to 29 years had a rate of 1.2 pain episodes per year compared to a rate of 0.4 pain episodes per year in children. With an alarming increase in the number of pain episodes occurring in adulthood, it is imperative that young patients with the disease learn how to navigate the healthcare system leading into adulthood.
Sickle cell anemia is an inherited form of anemia, a condition that exists when there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body. People with sickle cell disease (SCD) start to have signs of the disease during the first year of life, usually around 5 months of age. SCD is characterized as a lifelong chronic disease. There is no widely available cure. However, treatments such as pain medications and increased fluids can help relieve symptoms and treat complications. The majority of children with SCD now survive well into adulthood as a result of various treatment options. As more sickle cell patients are thriving into adulthood, they are faced with the process of transitioning from their pediatrician to an adult healthcare provider. This process can be challenging for some youth and their families.
Health care transition refers to the process of changing from a pediatric health team to an adult model of health care. The goal of transition is to improve the overall health of the youth and assist the young adult in reaching their full potential. In the case of patients with SCD, this transition to an adult model of health care involves transferring to an adult hematologist or a sickle cell center. It is recommended that the health care transition planning process be initiated at the age 14, but can start as early as 12 years old by making the youth and their family aware of transition policies. During the transition process, the patient and their parents or guardians work closely with their pediatric care team to develop a healthcare transition plan. The transition plan often includes referrals, setting up appointments to meet with various doctors, transferring care to adult medical homes, and identifying supports during post-secondary education. Once the youth has transferred to an adult hematologist or other model of adult care, the young adult should be equipped with the tools and skills to become his or her own advocate. The expectation is that young adult patients will be able to manage their appointments, medications and health insurance benefits. For more information about the transition process for youth with Sickle Cell Disease in the District of Columbia, please contact the Howard University Hospital Center for Sickle Cell Disease – Adult Transition Program (ATP) at (202) 865-8292. You may also contact AJE at (202) 678-8060 for additional resources and referral to the ATP program.
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