St. Jude’s Children’s Research Hospital has been awarded a six-year, $4.4. million grant from the National Heart, Lung and Blood Institute (part of the National Institutes of Health) to use a mobile app to improve medication adherence by adolescent patients with sickle cell anemia.

A new team comprised of healthcare professionals from St. Jude, the University of Memphis, Methodist University Hospital, Baptist Memorial Hospital, Vanderbilt University and the Sickle Cell Foundation of Tenessee will work together to integrate the app to manage hydroxyurea treatments, which is a medication to reduce pain and the need for blood transfusions.

The focus will be on patients 15 years old and older, and the project will be rolled out in phases beginning with identifying barriers to care of sickle cell and running focus groups to establish just what they want out of an app. They plan to get about 100 beta testers in the Memphis area before looking for opportunities to scale it up nationwide in a larger study of several hundred patients.

Dr. Jane Hankins, associate member of St. Jude's hematology department and principle investigator of the project, said the team is looking for ways to slow the progress of sickle cell as older teenagers transition to adult life. While healthcare professionals have made good progress using hydroxyurea to help children and adults take care of their disease, that transitional period in adolescence can present its own challenges. 

"Medication adherence is hard for anybody, but it's especially hard for someone who is becoming an adult and establishing their identity," Hankins told MobiHealthNews. "I've had patients who were previously 100 percent compliant and then they hit adolescence and they change. Some just abandon their treatment altogether, they stop coming to clinic or the hospital, they stop taking their medication, they don't want to accept their disease any more."

Sickle cell is a lifelong condition, diagnosed shortly after birth, that requires a carefully-followed treatment plan to reduce the need for blood transfusions and pain. Unless someone gets a bone marrow transplant, they must adhere to the medication or transfusions to reduce symptoms and prevent organ failure.

"The hallmark of sickle cell is pain," said Hankins. "And treatment reduces that, but if you aren't compliant with your medication, it's a problem."

So, using an app could provide an approachable, non-demanding way for adolescents to stay on top of their medication without a family member or caregiver nagging them, and they could also access information and social support through the app.

"We just have to see what works for them," Hankins said, adding that they will incorporate ideas from existing medication and patient education apps. "We want to be a force of easy access to information and support."

The project, which will take place across four care centers, is built on a pilot study that found text messages improved adherence rates for hydroxyurea by more than 15 percent. The research team at the University of Memphis will develop the app and measure the impact of its implementation.

Since sickle cell often affects vulnerable, low-income populations, identifying barriers to treatment is paramount, Hankins said, and it also poses a great opportunity for an app. 

"Paradoxically, cell phones have very high penetration in low income communities," Hankins. "They may move a lot, not have a land line, change carriers and all that, but they always have cell phones. So, if this works, and we make it free or very, very cheap, there is no reason it should not be supported by hospitals and clinics around the country."