iSCENSC is a three-part study that will use new methods (called implementation science) to identify ways to enhance care for people with sickle cell disease (SCD) who are in the (SC)2 South Carolina Sickle Cell network. The (SC)2 network is designed to help more people with SCD find a doctor with training in sickle cell disease and to improve their medical care. Part one of the study is a needs assessment where we look at the current barriers for people with SCD. Part two is a registry for individuals with SCD; and part three will be a study or studies to try and help improve the care for individuals with SCD.Participants in the SCDIC implementation research protocols may include either patients enrolled in SC2 or other MUSC patients with SCD
The purpose of this research project is to evaluate the effectiveness of a mobile health (mHealth) application in improving adherence to hydroxyurea therapy in patients with Sickle Cell Disease (SCD). Participants will be asked to install an application on their phone that will remind them to take their medication regularly. It notifies the participants when it is time to request a refill, it tracks their hydroxyurea use, and it gives them information on their medication. It also has resources that could be helpful for the ongoing care of their sickle cell disease. This is a 24-week project with 3 study visits. The first study visit will be at the beginning of the study period (enrollment or baseline visit), the second will be at approximately 12 weeks, and the third is at the end of the 24 weeks. At each visit, participants will complete a survey, share with us their experience with the application, and share with us where they refilled their medications. Some participants will also be asked to complete an interview at the end of their final study visit. Patient participants will receive a $25 Walmart Gift card at each of visits (including an additional $25 gift card for the optional interview) for their participation.
Patients with Sickle Cell Disease (SCD) report numerous barriers to the receipt of timely and appropriate care in emergency department settings. One barrier is the lack of information available to providers to quickly assess and appropriately treat pain and other issues related to SCD. This project aims to embed an Individualized Pain Plan (IPP) in the electronic health record of each patient with SCD so that relevant information is readily available and care can be delivered more accurately and in a more timely manner.