Who can participate?
Infants, children, teens and adults, 6 months to 20 years, who:
- Have sickle cell anemia
- Are prescribed hydroxyurea
Parents will also be asked to participate in this study.
What will happen in the study?
If you (as an adult 18 or older) or your child qualify for this study, and you agree to participate, there will be up to 6 study visits over the course of 1 year.
If qualified participants with SCA are 10 years or younger, their parent will take part in this study alone. If qualified participants with SCA are 11 years or older, both parent and child will each participate in the study and fill out surveys.
There will be a study visit with the research team every 2 to 3 months over the course of a year. Typically, these research visits will happen whenever there is a routine Sickle Cell follow-up appointment. However, if you/your child are scheduled to see the doctor for longer than 3 months, the research team will schedule an appointment sooner.
Participants with SCA will have blood drawn as part of the normal standard of care for sickle cell. This study will not require additional blood draws or blood samples.
The research team may first ask some participants (either parent or parent and child with SCA) to take part in a Pilot Visit. Not all participants will be asked to take part in this visit.
During the Pilot Visit, participants will fill out a brief survey that asks questions about behaviors taking hydroxyurea as well as SCA. Then, participants will receive up to 30 minutes of education about SCA, hydroxyurea, and be shown their/their child’s blood smear images to illustrate how hydroxyurea affects the blood. Afterward, participants will be asked to complete a brief feedback survey about the experience.
All participants in the study will complete the Baseline Visit. At this visit, participants will fill out a brief survey that asks questions about behaviors taking hydroxyurea as well SCA. Then, participants will receive up to 30 minutes of education about SCA and hydroxyurea. Participants will also be shown their/their child’s own blood smear images and lab results as a graph to illustrate how the body is affected by hydroxyurea.
Participants will then be "randomized" (by chance, like flipping a coin) into 1 of 2 study groups:
- Intervention/Education Group
- Standard of Care Group
At each of the next 4 study visits, participants in both groups will complete a survey asking questions about behaviors taking hydroxyurea.
However, only the participants in the Intervention/Education Group will continue to receive hydroxyurea/sickle cell education and be shown their/their child’s most recent blood smear image at each study visit. Participants in the Standard of Care Group will not receive extra education or personal blood smear images/lab results.
At the End of Study Visit, both study groups will complete an exit survey asking questions about their knowledge of SCA and hydroxyurea.
Participants, parents and/or guardians will be given a consent form that thoroughly explains all the details of the study. The form covers all the procedures, the risks, the benefits, the pay, who to contact with questions or concerns and more. A member of the research team will review the consent form with you and will be sure all your questions are answered.