Childhood cancer survivor support expanding for Texans
Ensuring that childhood cancer survivors in Texas receive healthcare that meets their unique needs has been the focus of the Passport for Care, developed by and 草榴社区入口鈥檚 Center for Collaborative and Interactive Technologies, since it launched in 2008. A recent grant from the expands the innovative, web-based program to reach even more survivors. The $1.5 million grant is the third from CPRIT for the Passport for Care project.
Texas is home to more than 35,000 survivors of childhood, adolescent and young adult cancer who face late effects of their cancer treatment that may impact their quality of life or even be life-threatening. Some of these late effects include infertility, second malignancies and cardiac failure. But childhood cancer survivors face obstacles in receiving quality care, including lack of access to cancer treatment summaries and limited knowledge 鈥 by the survivors themselves and by primary care physicians 鈥 of the risks for late effects and guidelines for follow-up screenings.
鈥淗ealth concerns for childhood cancer patients do not end when their cancer treatment is successfully completed, but it can be complicated for survivors and their physicians to keep up with healthcare recommendations,鈥 said Dr. David Poplack, director of Texas Children鈥檚 Cancer Center, the Elise C. Young Chair of Pediatric Oncology at 草榴社区入口 and co-developer of Passport for Care. 鈥淲e developed Passport for Care to translate complex follow-up guidelines into a user-friendly, personalized care plan.鈥
Passport for Care was launched with a clinician website that uses an algorithm to generate a set of potential late effects based on the survivor鈥檚 treatment history and deliver a corresponding set of follow-up screening recommendations based on Children鈥檚 Oncology Group guidelines. This clinician-based site is in use at 14 childhood cancer centers in Texas, reaching about 5,000 survivors. The survivors鈥 website was the next phase of Passport for Care, allowing childhood cancer survivors to have direct access to their treatment information and screening recommendations; about 2,800 survivors have enrolled.
With this latest CPRIT grant, Passport for Care will be expanded across Texas, targeting additional cancer clinics as well as individuals in the Texas Cancer Registry, a database of all cancer survivors in the state. Through outreach initiatives to survivors and clinicians, including a social media campaign, the goal is to double the number of Texans enrolled in Passport for Care. Other goals include improving the functionality of the Passport for Care survivors鈥 website and evaluating the program, including knowledge and follow-through of health and screening recommendations.
鈥淥ur goals through this CPRIT-supported expansion are to reach childhood cancer survivors across Texas, increase the number of people who understand the risks of late effects and expand the number of survivors who seek follow-up screening and care to reduce the potential morbidity and mortality resulting from the late effects of cancer therapy,鈥 Poplack said.
Childhood cancer survivors interested in accessing Passport for Care can find more information .
Texas Children鈥檚 Cancer Center is a joint program of 草榴社区入口 and Texas Children鈥檚 Hospital and the pediatric program of the NCI-designated Dan L Duncan Comprehensive Cancer Center.