Cancer survivors need a long-range care plan, IOM says

The health risks of many cancer treatments make it important for primary care physicians to be included in the information loop.

By Susan J. Landers — Posted Dec. 5, 2005

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Washington -- Starting a dialogue with patients' oncologists is one sure way for primary care physicians to deliver better care to cancer survivors. But reaching across specialties to coordinate care is not easy, a new Institute of Medicine report says.

To aid the discourse, the report, "From Cancer Patient to Cancer Survivor: Lost in Transition," recommends that each patient receive from their oncologist a "survivorship care plan" that summarizes information crucial to the patient's long-term care. The plan should include the diagnosis, treatment received and potential consequences of that treatment.

There are already 10 million cancer survivors in the nation, and that number likely will grow as the population ages and detection and treatment continues to improve. In the United States half of all men and one-third of all women will develop cancer.

All survivors will go on to receive care from a primary care physician who could benefit from explicit guidance from oncologists, according to the panel that drafted the report.

"There is currently no organized system to link oncology care to primary care," said Sheldon Greenfield, MD, chair of the panel that wrote the report and professor of medicine at the University of California, Irvine, College of Medicine. "Successful cancer care doesn't end when patients walk out the door after completion of their initial treatments."

Whether it's surgery, chemotherapy, hormone therapy or radiation therapy, cancer treatments can carry long-term health risks.

The need to know as much as possible for adequate patient care is great. Several of the patients seen by family physician Regina Benjamin, MD, a former AMA trustee who practices in Bayou La Batre, Ala., are cancer survivors, but they don't always volunteer that information with each visit.

"They aren't hiding it, it's just not a top priority," said Dr. Benjamin, who was a member of the IOM panel. She joined several physicians for a symposium on cancer survivorship held Nov. 8 at the National Academies of Science.

A survivorship care plan would be important when treating such patients, she said. The plan, affixed to the front of a patient's record, "would remind me of the things I need to be looking for, the things I need to be doing."

Information needs

A plan should be individualized and include suggestions for tests and management that are specific to a particular patient as opposed to "cookbook recommendations," said Pat Legant, MD, an oncologist in Salt Lake City. "For example, if I have a patient on tamoxifen, I don't care who is doing a pelvic examination, but somebody needs to do it every year."

But this exchange also must move both ways, she said. "Now, most of the communication goes from oncology specialist to primary care physician, but it should be back and forth. If my patient gets congestive heart failure, I need to know in order to make sure it isn't a relapse of cancer or a latent effect of treatment or to be able to reassure the patient that it has nothing to do with the cancer."

In addition to necessary tests and follow-up visits, the plans should include tips on maintaining healthy lifestyles and preventing recurrent or new cancers, legal rights affecting employment and insurance, and the availability of psychological and support services, according to the report.

The psychosocial impact of a diagnosis of cancer is great, but addressing it is often pushed aside until treatment concludes, said Ann Partridge, MD, MPH, a medical oncologist at Dana Farber Cancer Institute in Boston. But the issues don't go away, she said, and a care plan should point a patient toward needed support.

The panel also called for evidence-based clinical guidelines and standards to ensure that the best quality of care is provided to cancer survivors.

"I want to know what to look for, what symptoms to look for, what tests I need to be doing, what labs I should draw," Dr. Benjamin said. "I think guidelines would help us as primary care physicians."

While some measures exist, such as mammograms for breast cancer survivors, others could be established based on available evidence, the panel noted. For example, patients treated with certain chemotherapies should be monitored for heart conditions, and some treated with radiotherapy need to be checked for thyroid conditions.

The benefits of coordinated care also pay off in improved treatment for patients. Those receiving care from oncologists and primary care physicians are more likely to receive recommended care, said Kevin Oeffinger, MD, a family physician and director of Living Beyond Cancer at Memorial Sloan Kettering Cancer Center in New York City.

Electronic medical records could provide a major boost to communication, Dr. Oeffinger added. "We'd have a shared record that includes recommendation for screening," he said. "The system could unify three groups: oncologist, primary care physician and patient."

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Survivorship care

  • Cancer type, treatments received and their potential consequences.
  • Specific information about the timing and content of recommended follow-up.
  • Recommendations on preventive practices and how to maintain health and well-being.
  • Information about legal protections for employment and access to health insurance.
  • The availability of psychosocial services in the community.

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External links

"From Cancer Patient to Cancer Survivor: Lost in Transition," Institute of Medicine report, November (link)

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