Health "passport" helps childhood cancer survivors manage their care
UCSF pediatric oncology specialists have developed a new tool in an effort to address the needs of survivors of childhood cancer: a pocket-sized “health passport” the size of a credit card.
The Survivor Health Passport is aimed at educating the survivors, their families and physicians about their disease, their treatment and the potential long-term consequences, empowering them to know their individualized follow-up recommendations, according to Robert Goldsby, MD, medical director of the Survivors of Childhood Cancer Program at UCSF Children’s Hospital.
The passports are distributed to all patients in the survivors program.
Goldsby said that continuing advances in pediatric cancer treatments have resulted in a growing population of survivors of childhood cancer, and physicians still are learning about the long-term consequences of childhood cancer and its therapy.
“The most common childhood cancer is acute lymphoblastic leukemia (ALL), which was almost uniformly fatal prior to the 1970s. However, now we expect about 80 to 85 percent of ALL patients to be cured of their cancer,” he said. He added that about 70 percent of all children diagnosed with cancer should expect to live long-term.
“The study of the late effects of cancer therapy is actually a new field of medicine,” Goldsby said. “We are just beginning to discover the long-term consequences of our intensive therapies and it is important to provide the growing population of survivors of childhood cancer with appropriate follow-up care.”
“We want to make sure that pediatric cancer survivors are getting the appropriate clinical follow up and that they are knowledgeable about their risks for recurrence of disease and late effects,” he said.
In 2004, the President’s Cancer Panel reported that the number childhood cancer survivors underscored the need for a concise but detailed documentation of care received by each patient that could be shared with physicians and others, according to Goldsby.
The UCSF health passport contains all of the information relevant to each individual cancer patient’s treatment regimen and follow-up needs.
On one side of the card is the patient’s treatment history, including the details of all chemotherapy, what drugs were administered, in what dosages, at what ages, and the cumulative dosages given. It also includes a description of the significant surgeries and radiation therapy treatments that the patient underwent.
On the opposite side of the card is information about the patient, including name, date of birth, and the name of the treating oncologist with contact information. There also is a list of specific “therapy-related risks” and a description of specific exams the patient should undergo and at what intervals in order to ensure that health is closely monitored.
Goldsby explained that “therapy-related risks” refers to the potential health effects of specific therapies. “If there is a therapy that is tough on the heart we want to make sure that the patient’s heart is healthy.”
He added, “We like the passport because it’s a permanent copy that each patient can keep, and it’s portable so it can be used if the patient moves to another place,” he said.
The passport was developed by the team of the UCSF Survivors of Childhood Cancer Program. In addition to Goldsby, the team includes pediatric oncologist and medical advisor Arthur Ablin, MD; clinical nurse coordinators Aimee Sznewajs and Katie Aaronson; and social work specialist Anne Pearl, MSW, LCSW.
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