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A little early legwork smooths transition to adult care for survivors of childhood cancer

A simple treatment summary can ensure that childhood cancer survivors get the long-term care they need in adulthood

Jan. 8, 2014

Primary care providers are often at a loss when it comes to caring for adult survivors of childhood cancer, according to a new survey published Wednesday in The Annals of Internal Medicine.

Long-term health implications stemming from cancer treatment, and the screening needed to watch for them, are not recognized by many general internists, the survey found. But a simple document – a summary of cancer care and screening guidelines – can smooth the way for childhood cancer survivors transitioning to physicians accustomed to caring for adults, according to the study, which was based on findings from questionnaires filled out by more than 1,100 general internists in the United States.

Survival is just the first hurdle for children diagnosed with cancer. This ordeal can often result in other health problems – like heart disease or other types of cancer – that arise years later. Research is critical to understanding the unique health challenges these survivors face, and Fred Hutchinson Cancer Research Center investigators lead the way in examining long-term outcomes as well as interventions that help these patients take control of their health and happiness.

Once they reach adulthood, survivors of childhood cancer often transition out of a cancer-specific care setting and into a general internist’s hands. But when asked about their comfort level in dealing with such patients, internists often described themselves as “somewhat uncomfortable,” according to the new survey.

Patients exposed to chemotherapy or radiation early in life are at higher risk for certain medical complications and need tailored screening. For example, women who receive chest radiation before the age of 30 are at higher risk of breast cancer, and their mammogram and MRI-based screening should start early – a guideline recognized by less than 10 percent of the internists who responded to the survey. Only about 5 percent of respondents correctly answered all the questions about screening for breast, thyroid and cardiac health, and 72 percent of those who treated an adult survivor of childhood cancer had never seen a summary of their patients’ cancer treatment.

Dr. Tara Henderson, the leader of the study and a pediatric oncologist at University of Chicago Medicine Comer Children's Hospital, told Reuters Health, “Pediatric oncology care providers also need to ensure that their patients know their health history so they can also advocate for themselves when they enter the adult healthcare world.”

Dr. Eric Chow, a pediatric oncologist at Fred Hutch and Seattle Children’s Hospital who heads Seattle Children’s Survivorship Program, agreed that a patient summary – neatly encapsulating their specific treatment and recommended screening guidelines – is key to a smooth transition from pediatrician to adult primary care provider.

When pediatric patients transition from Seattle Children’s to Fred Hutch’s adult survivorship program, a patient summary goes with them. Because these patients are young adults and often unready to assume control of their health care, Chow and his team also make sure they’ve chosen an internist and that the internist receives a copy of the patient summary, which includes individualized screening guidelines. Just as important, parents are kept in the loop as well.

“The great thing about the Hutch is that we offer survivorship services to people who didn’t get their cancer treated here,” said Chow. Patients whose cancer was treated elsewhere, but who moved to Seattle later, can self-refer “if they want to get survivorship-oriented care.”

Resources available to adult internists faced with caring for childhood cancer survivors are limited, Chow said. Perhaps not surprisingly, most internists surveyed by Henderson preferred to care for adult survivors of childhood cancer in partnership with long-term survivorship programs or a cancer center-based physician.

For those care providers interested in learning more about long-term care of cancer survivors, Fred Hutch organizes conferences and continuing education courses led by local experts. And researchers like the Survivorship Program’s Co-Director, Dr. Karen Syrjala, have taken on the task of designing tools that can improve communication between care providers and patients.

With cure rates of childhood cancer topping 80 percent, the population of adult survivors who need tailored long-term care is burgeoning. Surveys like Henderson’s highlight continuing challenges in survivorship care, but they also underscore the importance of the work being done by researchers at the Hutch and elsewhere to develop strategies that allow care providers and patients to work together to ensure long, healthy lives.
 

Fred Hutchinson Cancer Research Center is a world leader in research to prevent, detect and treat cancer and other life-threatening diseases.