St. Jude Children’s Research Hospital, Department of Hematology, Comprehensive Sickle Cell Center, developed a series of educational modules “Sickle Cell Transition E-Learning Program (STEP) for Teens with Sickle Cell Disease”. The STEP program consists of videos designed as educational modules with interactive pre and post quizzes. The modules were designed as supplemental educational tools to help teens with sickle cell disease successfully transition from pediatric to adult medical care. There are 6 modules; a short synopsis of each module is provided below:
Module 1 : Sickle Cell and Me
This module provides a general definition of sickle cell disease, and common signs and symptoms of sickle cell disease.
Module 2: Healthy Living and Sickle Cell Disease
This module reviews the importance of nutrition and exercise for a teen with sickle cell disease; the effects of alcohol and tobacco use in a person with sickle cell disease; and the changes that occur during puberty in teens with sickle cell disease.
Module 3: Pain, Infection, and Sickle Cell Disease
This module reviews possible pain triggers, the importance of preventative pain measures, and treatment for mild or moderate pain episodes for a teen with sickle cell disease. Additionally, the video discusses signs and symptoms of infection in a person with sickle cell disease and the importance of knowing the proper response to signs of infection.
Module 4: Other Complications of Sickle Cell Disease
This module provides the basis for a preliminary discussion of some of the complications that may occur in a teen with sickle cell disease: stroke, avascular necrosis, acute chest syndrome, retinopathy, priapism, osteomyelitis, leg ulcers, gallstones, and some renal complication.
Module 5: Genes and Sickle Cell Disease
After reviewing this module, teens with sickle cell disease should be able to discuss the difference between sickle cell disease and sickle cell trait; to describe how genes are related to sickle cell disease; and to be able to name the most common types of sickle cell disease in the United States.
Module 6: Self-Advocacy for Teens with Sickle Cell Disease
The purpose of this module is to help teens with sickle cell disease become self-advocates by learning to communicate effectively; to assert his or her own interests; to speak up; to partner up; and to be firm, positive, and assertive. At the end of the video, there are two scenarios to help practice these skills.
You can access the modules at http://www.stjude.org/sicklecell ; click the link on the left, “Sickle Cell Interactive Teen Education Video” , and you will be directed to the links for the educational modules. The modules are available free of charge. The modules are not intended to take the place of the care and attention of your personal doctor. Our aim is to promote active participation in your care and treatment by providing information and supplemental education. Questions about individual health concerns or specific treatment options should be discussed with your doctor. Development of the modules were funded St. Jude Children’s Research Hospital, ALSAC, and a grant from the Verizon Foundation.