Childhood cancer survivors experience a gap in care

January 24, 2014, Loyola University Health System

A recent study shows that many internists feel ill-equipped to care for adult patients who are childhood cancer survivors. Eugene Suh, MD, assistant professor in the division of Pediatric Hematology & Oncology at Loyola University Chicago Stritch School of Medicine, was first author of the study that was conducted the University of Chicago with Tara Henderson, MD, MPH.

As technologies and treatments advance, the number of is growing. In fact, it is estimated that there are more than 350,000 survivors in the U.S. As these children grow into adulthood and their care is transitioned to adult medicine providers, Suh's study has shown that many internists don't feel prepared to provide the care and monitoring necessary for these patients.

In response to this need Loyola University Health System has established a Childhood Cancer Survivorship Clinic. This multidisciplinary clinic is designed to help facilitate the needs of survivors and families and to serve as a resource for .

"As we see the number of survivors grow, it's so important to educate the patient, their family and physicians about care plans for survivors," Suh said. "Providing information about a survivor's treatment history as well as appropriate surveillance guidelines to patients and physicians is a need that we now know exists."

The study involved a sampling of physicians from across the U.S. who listed general internal medicine as their primary specialty from the American Medical Association Physician Masterfile. The mailed survey assessed respondents' demographics, medical education and practice structure. It was derived from a previous survey concerning physicians' attitudes and knowledge about cancer care. A survivor was defined as a patient diagnosed with cancer at or before the age of 21 who was at least five years from cancer therapy completion and was cancer free.

"For some survivors this is a period of their life they would prefer to put behind them and not to think about, but it's important for them to be engaged in their health care. We realize if they are to come back into the health-care setting it would most likely be with their primary care provider. That is why it's so important for adult primary care physicians to feel comfortable caring for these patients," Suh said.

Though surveillance guidelines for childhood have been available since 2003, the Institute of Medicine reports that most survivors are not engaged in appropriate risk-based health care. One likely reason identified by the study is that most primary care physicians are not provided survivorship care plans.

More than 61 percent of internists who received the survey completed it. Fifty-one percent said they had cared for at least one childhood cancer survivor and among these 71 percent said they never received a treatment summary. On average most internists reported being somewhat uncomfortable caring for childhood cancer survivors and most preferred to care for the patient in collaboration with a cancer center-based physician.

"From an oncologists standpoint, it is our responsibility to the patient to work closely with primary care providers to ensure cancer survivors are healthy and informed, and that they receive the best health care possible," he said.

The study showed how essential a survivorship care plan is for a patient and physician. It also highlighted the need for primary care physicians to have access to and education about the guidelines for caring for childhood cancer survivors.

"In an age of information technology sharing and education, resource availability could be accomplished by providing links to guidelines on webpages where primary care physicians turn for information and through webinars on survivor advocate websites," Suh said.

With 70 percent of adult childhood cancer survivors having a chronic health condition, it is extremely important for physicians and medical institutions to bridge these communication and education gaps.

Explore further: Childhood cancer survivors a growing patient population

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