Akron, Ohio-based Akron Children's Hospital has launched an app and website for childhood cancer survivors called CancerLateFX created out of a $100,000 grant from Hyundai Hope on Wheels, a nonprofit organization aimed at supporting the fight against pediatric cancer.
CancerLateFX, available on iOS and Android platforms as well as on a website, was created to help childhood cancer survivors understand the late effects of their disease and prevention measures that they can use as young adults. The program also aims to build self-advocacy and self-care characteristics in the patient, once he or she has left the pediatric system.
"We tried to think about the patient population that struggles the most and for us in our survivorship program it's the young adults," Dr. Stephanie Savelli, director of the Cancer Survivorship Program at Akron Children's Hospital told MobiHealthNews. "They're having to leave the comfort of their pediatric oncology practice that they've usually been with for many, many years, and then in our situation, we're not associated with a larger adult system so we don't have oncologists to transfer our patients to. We have to transfer them out to general internists and family practitioners, and a while ago we had done a survey indicating [the doctors'] comfort and knowledge level in caring for childhood cancer survivors and it's essentially none. They just don't have that comfort level."
Users do not have to be a part of Akron Children's Hospital to use the app, which asks patients a series of general questions about their specific cancer experience to offer personalized goals, tips and information.
"When [patients] access the app, they just have to put in a little bit of info if they choose to about gender (because many of late effects differ based on gender), the type of cancer that they had, what modalities they were treated with if they know, specific chemotherapy agents or just chemo in general and radiation, and then based on that they will get a list of potential late effects that they are at risk for," Savelli said.
Within the program, users can access a number of features including an education center to learn more about childhood cancer drugs and treatments, a list of goals based on the user's profile that the user should aim to keep in mind as he or she gets older, a resource page with information on the user's specific disease such as suggested food pyramids and 5K events, and a medical history. The app and website also offer a talking points section so that users can record information that they want to discuss with their doctor at their next visit.
"This is not something we developed for our patients at all, it's really for the general public," Savelli said. "What we did utilize to create some of the educational pieces in the app are education sheets that we give to our own patients when they come to our survivorship and late effects clinic."
Savelli had initially approached Hyundai Hope on Wheels for funding to create the late effects clinic for childhood cancer survivors, but after the nonprofit gave her more money than expected, she and Akron Children's Hospital nurse practitioner, Pam Jones, worked with app developer Eyemg to create the app and website.
Within the first two days, the app reached 53 downloads, and Savelli said a clinic from Canada and Penn State's children's hospital have both expressed interest in using the app in their programs.