Family Resources

Transition should not happen at any one time or age. Instead, transition should be a gradual process; it is something that you, your family and your healthcare team work on over time.

It is never too early to start thinking about transition because preparation leads to success. It is a good idea to start creating a transition plan with your healthcare team before age 14. You will be able to work on this plan for a few years before actually moving to a different doctor or hospital.

It is important to know that some pediatric hospitals have different practices and rules regarding care of older patients. For example, at some places patients over the age of 21 cannot be admitted to the pediatric hospital. At other places the age limit is 18 or 22 years. Ask your doctor about the policies at your hospital. Here is the policy at Children's National Hospital (PDF).

The Sickle Cell Disease Adolescent and Young Adult Transition (SCAT) program at Children’s National Hospital provides comprehensive medical care and psychosocial services to patients from 18 to 21 years of age. Transition is the carefully planned movement of patients from pediatric to adult care. It is a gradual process that is provided in a well-coordinated and uninterrupted manner. Your transition from Children’s National Hospital to an adult hospital will vary depending on your individual needs. As you become an older adolescent or young adult, your hematology provider, nurse coordinator and social worker will work closely with you to prepare for adult care. 

Transition may not occur at 21 years of age for everybody. Here are some examples of possible exceptions:

• Pregnancy: Children’s National cannot provide obstetrical services
• College: Some patients decide to transition earlier than 21 if moving away from home for college or other activities
• Personal Choice: Some patients may decide they are ready to transition before age 21

STRIVE DC is a hospital-based support and education program that addresses the social, psychological, educational and health barriers that adolescents with sickle cell disease face through health education, peer group, individual mentoring and academic support. Learn more about STRIVE DC under Online Resources.

Talk to your healthcare team about this important question. Depending on your location you may have many options or one preferred place.

Transitioning allows you to become a successful, independent adult. While you might not like some of the responsibilities that come with transition, remember that you are gaining more privileges. Through transition, you earn the freedom to be in control of your own life.

Transition can be difficult because you might be leaving a pediatric doctor or healthcare team that knows you well and that you like. These individuals, however, are often not specifically trained to treat adults. Treating adults and children with sickle cell disease can be very different and pediatric hospitals are designed to take care of children, not adults.

Get prepared

The SCAT Program is designed to help prepare you to transition from child-centered healthcare to adult-centered healthcare. The program addresses the issues associated with transitioning and how to help make it a smooth process. The core elements of readiness assessment, disease education, self-care management and post transition follow-up are essential to improved health outcomes.

This process includes transition planning, preparation, healthcare system design, implementation and views of the patient and caregiver. These components play a major role in a successful transition and helping you become your own health advocate.

An advocate is someone who stands up for a cause. As a young adult with sickle cell you now need to start speaking up—advocating—for yourself.

Next Step STRIVE DC is a free mentoring and advocacy program in Washington, D.C., that offers opportunities to learn from young people living with sickle cell disease. Learn about how advocacy has impacted the lives of young adults with sickle cell.

To become a good advocate for yourself, you must practice talking to your doctor independently.

Read the below statements and answer "YES" or "NO" for each one.

If you can answer "YES" to most, great! You are likely ready to transition soon. If you answer "NO," to a statement, use this website and talk to your doctor for help related to that topic.

Medical History Checklist

• I know what type of sickle cell disease (hemoglobin SS, SC, S beta thal, etc) I have.
• I know my baseline hemoglobin level.
• I know all of my medication names and doses.
• I know what all of my medications are for and what they do.
• I know all of my drug allergies.
• I know all of the surgeries that I have had.
• I know I have developed antibodies because of past blood transfusions.

Medical Knowledge Checklist

• I understand how I got sickle cell disease.
• I understand behaviors and triggers that can cause a pain episode.
• I know why drinking a lot of fluid is important for people with sickle cell disease.
• I understand the importance of a healthy diet as it relates to sickle cell disease.
• I understand how I might pass sickle cell disease on to my child.
• (For females) I understand how sickle cell disease could affect my health if I got pregnant.
• I know about serious complications in sickle cell disease (acute chest syndrome, stroke, priapism, etc).
• I know what is considered an emergency related to sickle cell disease and what to do.
• I know how the use of tobacco, alcohol and other drugs can affect my sickle cell disease.

Medical Skills Checklist

• I can tell someone what sickle cell disease is and how it makes me feel.
• I know how to use a thermometer and what to do if I have fever.
• I ask questions during my medical appointments.
• I know how to schedule a medical appointment.
• I keep track of my medical appointments using a calendar.
• I can get myself to my medical appointments.
• I know how to get my prescriptions filled.
• I have or am working on a medical transition plan when I leave pediatrics.

Education and Vocation Skills Checklist

• I have a 504 Plan or Individualized Education Plan (IEP).
• I participate in my 504 or IEP.
• I plan to graduate from high school/vocational school or obtain a GED.
• I have been thinking about the kind of career I would like as an adult.
• I have talked to my school counselor or a teacher about my educational/career goals.
• I know what type of training I might need for the career I would like as an adult.
• I know the types of work situations that could cause problems related to sickle cell disease.
• I have practiced my job interview skills.
• I know how to write a resume.
• I know where to find information about job training and opportunities.
• I know where to find information about educational scholarships.
• I have talked with my parents about my vision for my future.

Health Benefits Checklist

• I know what kind of medical insurance I have.
• I understand the different types of health benefits that are available to me.
• I know how my age can affect my health benefits.
• I carry my own copy of my health insurance card.
• I have a profile with my insurance carrier.
• I have a plan for the future regarding my health benefits.

Social Support Checklist

• I have a good support system of family and/or friends.
• I understand what self-esteem is.
• I understand the difference between being sad and being depressed.
• I understand what "healthy relationships" are.
• I have hobbies or activities that I enjoy.
• I have a person that I can talk to about sickle cell disease.
• I have a positive vision of my future.

Note: Above checklists were adapted with permission from the Virginia Department of Health Sickle Cell Transition Intervention Program.

Click here to visit Got Transition, a resource for young adults to move from pediatric to adult health care.