About 100,000 Americans are affected by sickle cell disease, and the disease disproportionately affects people of color, according to the Centers for Disease Control and Prevention. About one in 13 Black or African American babies is born with the sickle cell trait. The disease causes a continuous shortage of red blood cells and can lead to pain and complications like infections, acute chest syndrome and stroke.
A new app could alleviate these problems for teens. Chicago-based HPC International, a healthcare purchased services provider, teamed up with health communication research and technology firm Klein Buendel to launch Pinpoint last week. The interactive app is designed to help teens manage sickle cell pain by allowing them to learn about the disease, track their pain and communicate with their physicians.
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Through Pinpoint, users can fill out a daily assessment, which allows them to draw where they’re feeling pain and answer questions about their symptoms (like how much pain they were feeling while exercising). Their responses can then be made into a PDF file that can be shared with their provider or parent/guardian. There is also an area that helps teens learn how to communicate about their sickle cell through different interactive games.
The learning happens in another way too. A section of the app offers recent news about sickle cell and tips on how to manage the disease. This educational content comes from the Hope & Destiny book series, which is about sickle cell disease and was written by three hematology experts. Users can also read real stories from other sickle cell patients.
HPC International created the app for teens since many of them may be struggling with navigating and understanding sickle cell disease, said Dr. Hilton M. Hudson, CEO of HPC International.
“We wanted to create a gaming app, and we felt that the teenage mind would resonate really well to this,” Hudson said in an interview.
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The app costs $9.99 per year and can work on any smartphone. HPC International will also sell Pinpoint to hospitals, Hudson added.
The development of Pinpoint was funded through two Small Business Innovative Research grants provided in 2016 and 2018 by the National Institutes of Health. HPC International chose to create the app after visiting the Washington D.C.-based Children’s Hospital, whose CEO invited Hudson to speak with the hospital’s scientists treating sickle cell.
“The scientists told me that they were having a hard time treating patients with sickle cell who had chronic pain, and that they would always treat them with the same medications, opioids or nonsteroidals,” Hudson said.
Other apps supporting patients with sickle cell disease include My Sickle Care and Living Well with Sickle Cell, which also help users track their symptoms and learn about the disease.
Ultimately, HPC International hopes Pinpoint can meaningfully support teens in managing their sickle cell disease.
“[Our goal is] that people truly come back and say that this helped them, that doctors push people toward the app to help control and identify their pain, to see a reduction in the number of people coming to the emergency room and to provide a sense of hope and control,” Hudson said.
Image by Meletios Verras, Getty Images
