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For Teens with Sickle Cell Disease
Sickle Cell Disease Program

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Sickle Cell Disease Program
Sickle cell Transition Education Project (STEP)


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
Medical Knowledge Checklist
Medical Skills Checklist
Education and vocation skills checklist
Health benefits checklist
Social support checklist

Medical History Checklist
I know what type sickle cell disease (hemoglobin SS, SC, S beta thal, etc) you have?
I know my baseline hemoglobin level?
I know my baseline pulse ox 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?

Note: Checklists below taken from the Virginia Department of Health

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Medical Knowledge Checklist
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 got 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.

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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 answer my doctor’s questions during my clinic visits.
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

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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 want.
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.

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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 plan for the future regarding my health benefits.

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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.

Please note above checklists were adapted with permission from the Virginia Department of Health Sickle Cell Transition Intervention Program

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