Empowering youth with sickle cell pain: National clinical implementation of an effective mHealth innovation

Sickle cell disease (SCD) is one of most common blood disorders. It mostly affects Black and Brown people. We know that 1 in 3 people with SCD live with chronic pain nearly every day. This pain often gets worse as teens grow into young adults. Young people living with SCD can experience difficulties with physical activity, low mood, poor sleep, and high stress. It is important to find new ways of supporting young people living with SCD. Technology is a good way to reach this group, especially using common devices such as smartphones. Our research team has created an app specifically for youth called iCanCope with SCD. The app is designed to help youth to learn new ways to cope with SCD. For example, they can track their symptoms, set personalized goals to improve their function, learn new skills, and be part of a community of other young people with SCD. Our team recently finished a large study across Canada and the United States to test out the iCanCope with SCD app. We found that youth who used the iCanCope program reported less pain and fewer days with pain, compared with youth who received education alone. The next step is to figure out the best way to get the iCanCope with SCD app into the places that treat youth with SCD. We have partnered with all major SCD clinics across Canada. All 8 clinics have agreed to try out the app as part of the care offered to youth. We will complete this project in a few steps. First, we will work with each clinic to figure out the best ways of including app at their site. Second, we will see how clinics actually use the app and whether it helps to improve the health of youth. Lastly, we will think about the lessons learned across all the hospitals. We will then put together a guidebook to help other hospitals consider how to include the app in their care. This project is important because it will help us to understand how iCanCope with SCD works in the real-world and make it better to support youth with SCD across Canada.