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Title
Children’s of Alabama Researchers Develop App for Parents, Caregivers of Pediatric Cancer Patients
Date
09/27/2021
Description

BIRMINGHAM – Parents and caregivers of children with cancer now have access to a new app that got its start at Children’s of Alabama. The KidsCare App, adopted by the Children’s Oncology Group (COG), launched in August 2021 and is designed to provide parents and caregivers with accurate and relevant information about their child’s cancer journey, beginning at the time of diagnosis and throughout the continuum of care.

Wendy Landier, PhD, CRNP, Deputy DirectorInstitute for Cancer Outcomes and Survivorship at Children’s of Alabama, began working on the app in 2018 through a research grant supported by the Kaul Pediatric Research Institute. With direct input from families of pediatric oncology patients and clinical staff, the app is a resource for educational materials with additional features to help parents track the child’s cancer journey.

The COG KidsCare app is free and available for iOS and Android devices in English, Spanish and French. The app is searchable and organized according to the child’s treatment phase – newly diagnosed, during treatment and after treatment. The app was developed in collaboration with OCV, LLC., based in Auburn, Ala.

“During the development of the app, we interviewedamilies of children being treated for cancer at Children’s of Alabama. We asked them what kind of information would have been most helpful during the early stages of their child’s treatment and what information they needed later. We also spoke with nurses, doctors and our psychosocial team to get an understanding of how the app could best serve our families,” said Dr. Landier.

Based on that initial research and through additional rounds of testing and interviews, Landier said they added features to record information like the child’s lab results, vital signs, provider contact information, previous treatments and personal journal entries.

After each round of testing, Landier’s research team asked the participants to remove the prototype from their phones. “We knew it was a success when they told us they didn’t want to delete the app after the testing was complete.”

That exact sentiment was shared by Madison Murphy, mom of 6-year-old Cole. Cole was diagnosed with acute lymphocytic leukemia in March 2019. Madison and her husband Micah participated in Dr. Landier’s research study later that year. “I wish the app had been available to use since day one,” Madison said. “Having access to resources that we knew were accurate made all the difference. There is too much information out there online, and it can be overwhelming. On the app, we had information specific to Cole’s care.”

In May 2020, Landier approached her COG colleagues about partnering together to incorporate COG’s educational materials into the KidsCare app and making it available to all COG institutions. With generous annual funding from St. Baldrick’s Foundation, the COG KidsCare app is now available to patients and families of the more than 200 member hospitals that make up COG.

Meredith Weintraub, CRNP, MSN, CPHON, works with pediatric cancer patients at Children’s of Alabama, and said she sees many potential benefits for families. “We give patient families a lot of printed information throughout their child’s treatment – a family handbook, home care instructions – and the app has all of it in one place,” Weintraub said. “It will be so much easier for them to access that information electronically.” Weintraub said she thinks families will appreciate that the app is accessible, portable and easy to use. And on the clinical side, it provides crucial information about the patient if the family has to seek emergency care at a facility other than their primary hospital.

COG member hospitals can customize the app with information specific to their facility, such as parking, driving directions, facility maps and instructions about how to reach the oncology care team.

The Children’s Oncology Group (COG), a National Cancer Institute supported clinical trials group, is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. The COG unites more than 10,000 experts in childhood cancer at more than 200 leading children’s hospitals, universities and cancer centers across North America, Australia, New Zealand and Saudi Arabia in the fight against childhood cancer. Children’s of Alabama is a founding member of COG.