MUSC launches sickle cell disease app for adolescents

CHARLESTON, S.C. (WCSC) - An app launched by the Medical University of South Carolina for children and adolescents with a rare disease is helping doctors understand this disease.

The app helps children and teens monitor their sickle cell disease and helps doctors have a better understanding of their pain, and helps them keep track of pain in patients.

College of Nursing Associate Professor Dr. Shannon Phillips said the app, called “Voice Crisis Alert,” allows children up to age 17 to build self-management behavior and skills outside of a clinical environment.

Phillips said the app has been years in the making and tells me it provides tools that people with sickle cell disease can use to help them manage their condition at home

MUSC says the app is personalized. It includes a patient’s sickle-cell-related health history: their type of sickle cell disease, their blood type, white blood count, medications and doses. The app also reminds them to take their medications.

Dr. Phillips says there are also fun features like customizable avatars.

According to MUSC, the app features an “I’m in Pain” button which allows users to say where on their body they’re in pain- as well as the severity of the pain. Dr. Phillips says the app stores pain history- which helps researchers try to uncover behaviors that may be indicators for pain.

Phillips said parents who provided feedback said their children were more open to monitoring their pain on an app than talking about it in person which means parents have a better understanding of their child’s pain.

“One thing that came out of those interviews regularly was that the parents were able to better pinpoint where and when their children were having pain,” said Dr. Phillips. “So without the app, they may not always know that their child was experiencing more pain but the app let them know that on a more regular and consistent basis.”

MUSC currently has 105 app users and the next phase will expand to four hospitals to broaden sickle cell research.

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