Tools to Empower Pediatric Cancer Survivors' Healthcare

We need to know more about the health challenges pediatric cancer patients may face in the future, and the best way to do that is to follow these patients as they age.
-Dr. David Poplack

“Health concerns do not end when cancer treatment is successfully completed,” said Dr. David Poplack, professor and head, Hematology-Oncology Section, Department of Pediatrics at Baylor College of Medicine and director of Texas Children’s Cancer Center. “We need to know more about the health challenges pediatric cancer patients may face in the future, and the best way to do that is to follow these patients as they age.”

More than 75 percent of pediatric cancer patients are cured, but approximately two thirds of them will have late effects of their treatment that can be serious and even life-threatening. The Texas Children’s Cancer Center runs an entire clinic dedicated to this increasingly important area of pediatric cancer care.

Eligible patients have been off treatment for two years and are typically four to five years post-diagnosis. The Long-Term Survivor Program has pediatric and internal medicine clinicians who follow these patients yearly.

Unfortunately, many of the survivors ultimately no longer return to the clinic and are followed in the community by physicians without specialized training in the survivor’s medical issues. In fact, of the more than 450,000 survivors of childhood cancer in the U.S., it is estimated that less than 20 percent are being actively followed by a survivor clinic. Recognizing this need for surveillance of long-term survivors, Poplack partnered with Dr. Michael Fordis, director of Baylor’s Center for Collaborative and Interactive Technologies and the Children’s Oncology Group to create the Passport for Care.

The Passport for Care is a web-based decision support tool to address the needs of physicians and survivors for individualized information about surveillance testing for more than 150 potential late effects, such as infertility, secondary malignancies and heart disease, which could impact the survivor down the road.

Portal Makes Survivorship Guidelines a Click Away

dldccc-annual-report-pg15-pediatric-passport (320x240)
Cancer survivor Jake learns about the Passport For Care program.

Since its development in 2008, Passport for Care has grown to serve nearly 26,000 survivors, and it is used in over 125 clinics. The program is free to Children’s Oncology Group institutions, and is fully supported by philanthropic efforts and grants, including funding from the Cancer Prevention and Research Initiative of Texas (CPRIT).

The Passport for Care Clinician Website allows oncologists to enter a survivor’s basic medical history, including type of cancer and treatment, including any chemotherapy, radiation or surgery.

With the click of a mouse, the Passport for Care program then generates individualized health care recommendations for the long-term survivor based on the most up-to-date survivorship guidelines, which were developed and are updated by the Children’s Oncology Group and programmed within Passport for Care.

These guidelines help inform the physician about the survivor’s risk for late effects, potential risk factors, surveillance tests and recommended frequency for testing and follow-up screening.

The Clinician Website has been used for more than six years; currently by clinicians in 125 pediatric oncology clinics on four continents. It provides them with a detailed summary of the survivor’s treatment, individualized recommendations for screening and preventative health based on the latest guidelines, and Health Links, a survivor education tool.

The Passport for Care also has a Survivor Website, developed and initially implemented with the support of a CPRIT grant, which allows the survivor direct access to their information from the Clinician Website translated into lay language in English or Spanish. They or, in the case of minors, their parents can view their individualized treatment history, health risks, recommendations for follow up care and health information specific to their risks and share the information with their physicians.

The Survivor Website will provide survivors who are no longer followed by an oncology-based survivor clinic with the information they need for their care. We intend to use social media to encourage survivors everywhere to sign up to have their treatment information entered in the Survivor Website by their oncology clinic or with the help of the Passport for Care patient navigator.

According to Dr. Marc Horowitz, professor, Hematology-Oncology Section, Department of Pediatrics at Baylor College of Medicine and Texas Children’s Cancer Center, “the Passport for Care has been extremely successful in providing survivors of childhood cancer and their clinicians with detailed, tailored guidelines necessary to navigate what has come to be a very complex aspect of pediatric cancer care. Additionally, the Passport for Care has significant research potential which we have just begun to explore.”