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June 6, 2006 • Volume 3 / Number 23 E-Mail This Document  |  Download PDF  |  Bulletin Archive/Search  |  Subscribe

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Community UpdateCommunity Update

Passport for Care: An Internet-Based Survivorship Care Plan

The large increase in the numbers of children surviving cancer is one of the great success stories of cancer research and treatment. Many children who otherwise would have died shortly after a cancer diagnosis are now living well into adulthood. But, it is becoming increasingly clear that extending lifespan and preserving quality of life for survivors depends on screening for and managing the potential long-term effects of therapy.

Because childhood cancer survivors often lack information about the treatments they received and their long-term health implications, researchers at Texas Children's Cancer Center and Baylor College of Medicine's Center for Collaborative and Interactive Technologies in Houston, Texas, in conjunction with the Children's Oncology Group (COG), are developing an interactive Internet resource, the Passport for Care (PFC).

"The Passport for Care is designed to address the fact that survivors of childhood cancer change physicians frequently, may not be aware of the specific therapies they received, and often seek care from physicians who are unfamiliar with their disease and its treatment," said Dr. David Poplack, director of Texas Children's Cancer Center and a co-developer of the PFC. "Developing portable and accessible summaries of treatment and potential health risks enables survivors to actively participate in their follow-up care."

Survivors of childhood cancer are particularly at risk for second malignancies and other long-term complications of therapy, including learning and cognitive deficits; cardiac and cardiovascular problems; growth, endocrine, and fertility problems; and liver, lung, and kidney dysfunction. Recent studies suggest that between two-thirds and three-quarters of survivors will experience at least one of these late effects, some of which can take years to develop.

Consistent medical follow-up for cancer survivors is complicated by several factors: Americans change primary health care providers every 2 years on average; survivors often are not familiar with the details of their treatment history and cannot accurately share pertinent medical information with their health care providers; and primary care providers often are unfamiliar with cancer treatments or with the potential long-term complications of cancer and cancer therapy.

To address many of these problems, the PFC Web will include:

  • An end-of-treatment care summary with individualized recommendations that can be shared securely with providers at the request of survivors
  • Customized recommendations for survivors' follow-up care based on their treatment history, which will inform survivors about their level of risk for late effects
  • A system providing survivors with updated changes in their individualized surveillance guidelines as new information becomes available
  • Education materials customized to patients' needs based on their disease and its treatment

"The Passport for Care essentially addresses what the 2003 Institute of Medicine report, Childhood Cancer Survivorship: Improving Care and Quality of Life, indicated was necessary to empower survivors - enabling them to get appropriate long-term follow-up," says Dr. Poplack. "Our process of developing an online database for the Care Summary and COG guidelines is on track. Testing will soon begin in the Long-Term Survivor Clinic at Texas Children's Cancer Center, followed by a pilot at three additional survivorship clinics around the country."