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National Sickle Cell Awareness Month: How MUSC Health Serves its Youngest Patients

September 26, 2023
Emily Schweich

September is National Sickle Cell Awareness Month, and association member Medical University of South Carolina (MUSC) Health is taking a unique approach to improving care for youth and young adults with sickle cell disease (SCD).

SCD is a genetic condition that affects the body’s red blood cells and can cause pain and other serious problems, such as infection, acute chest syndrome, and stroke. The Centers for Disease Control and Prevention estimates that SCD affects approximately 100,000 Americans, with the highest incidence rate among Black patients. SCD occurs in nearly one out of every 365 Black births.

Users see a variety of options upon opening the app.
Voice Crisis Alert allows users to track functioning and pain and medication history; it also includes educational materials.

MUSC Health, in Charleston, S.C., created a mobile app called Voice Crisis Alert to help youth and young adults up to 25 years old with SCD track their pain and build self-management skills.

Because pain recall often is a challenge for patients, the app allows patients to easily track and record fluctuations, which in turn helps patients more accurately explain their symptoms to providers. The app also includes educational materials, crisis care options, and medication history.

Shannon Phillips, PhD, RN, associate professor at MUSC’s College of Nursing, spearheaded the development of the app, which launched in early 2023.

After working with a technology team to create a prototype, Phillips interviewed children with SCD, as well as their parents, caregivers, and health care providers, to find out how the app could best meet their needs.

“[I’d] ask them, ‘What do you like about this? What do you not like about this? What are we missing? What do we need to change?’” explains Phillips.

While Voice Crisis Alert initially was intended for children and adolescents up to 17 years old and parents of younger children, parents and caregivers suggested the app would be useful for older adolescents transitioning from parent-led management to self-management.

Users are able to create avatars of themselves to track their pain.
Users can create avatars of themselves to track their pain.

Phillips says that there’s long been a national gap in research and treatments for adolescents and adults who face SCD.

“Because our pediatric clinic sees up to age 25, we were really just looking to capture the young adults before they moved from pediatric care to adult care,” says Phillips.

In April 2023, MUSC received funding from the National Institutes of Health’s National Institute of Nursing Research for a large-scale study, which also includes association members University of Miami, in Miami, and East Carolina University, in Greenville, N.C., as well as the University of Alabama at Birmingham. Launching in fall 2023, the study will assess how access to self-management tools affects health outcomes for 272 adolescent and young adult users.

While anyone with a mobile device can download Voice Crisis Alert, several features are available only to users enrolled in MUSC’s studies. For example, while educational materials and pain tracking are available to all users, only parents whose children are enrolled in the study can have a mirrored version of the child’s app that allows them to see what their child has recorded. Study participants also can see their recorded notes through a functional history graph.

“Only people who consent to enroll in our studies are our study participants. We put them into the app’s backend database in a different way than how general users enroll,” explains Phillips.

Voice Crisis Alert currently does not integrate with electronic health records, but study participants can opt to email recorded data to their health care providers every three months.

Because previous studies were shorter in duration, they gathered limited data about the app’s benefits on care management, Phillips says. However, because the upcoming study will last five years, she expects the results to turn a new and improved page for care.

Phillips hopes more patients with SCD take part in similar studies and clinical trials to further improve and expand patient care.

“I would encourage anybody who’s interested to look for clinical trials for sickle cell disease, because as much as we want to advance this work, we can’t do it without our study participants,” she says.

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