The Institute of Medicine (IOM) is calling on health professionals, insurers, advocates, and the government to work together to improve follow-up care for the 10 million cancer survivors in the United States. In its recent report, From Cancer Patient to Cancer Survivor: Lost in Transition, the IOM makes 10 specific recommendations for changing the way the US health care system addresses the long-term consequences of cancer and its treatments.

"This is very practical information intended to shift our thinking of what we need to do for cancer survivors," said Bonnie Teschendorf, PhD, one of the authors of the report and Director of Quality of Life Science for the American Cancer Society. "The focus has been on cure. Now we recognize that many survivors have late effects from treatment, second cancers, and related psychosocial problems. We hope the book will trigger some changes in practice, especially patient education, and influence policy."

One of the ways health care providers can improve care for cancer survivors is by giving them a comprehensive summary of their cancer care and a detailed plan for follow-up care. The doctor who provided most of their oncology treatment should write this "Survivorship Care Plan," the report says. It should include detailed information about diagnosis (type and stage of cancer, treatment types, schedules and dosages, side effects, etc.) as well as information on future screening practices and other precautions patients should take.

Having such a plan could dramatically simplify future medical care for cancer survivors, said Teschendorf.

"What happens now in the majority of centers is … once a patient has completed [cancer] treatment, they're sent back to their primary care physician and there's not a real clear plan for what will happen next," she said.

Over the course of treatment, patients may collect dozens, if not hundreds, of documents relating to their illness, she explained. Many patients don't know how much of this information is important for their primary care physician to have later. Some resort to lugging cardboard boxes full of these documents to each new doctor they visit, Teschendorf said. But doctors may not have the time to sift through so much information.

Consolidating the basic facts about a patient's cancer treatment and recommended follow-up in one place would make it easier for primary care physicians to give cancer survivors the care they need, Teschendorf said. Oncologists could use the discharge summary they already write for their own records as the starting point, she added.

"With a good document, a family practice doctor should be able to conduct follow-up," she said, "but he needs information on treatments [the patient received] and what the expectations and long-term follow-up should be."

Along with better instructions for follow-up care, the IOM report calls for guidelines to standardize what that follow-up care should be, and the creation of a system to monitor the quality of that care.

In addition, the report says health care providers need better training in survivorship care and calls on professional associations, voluntary health organizations, and the National Cancer Institute (NCI) to offer continuing education in this field. Extra training should be offered not only to oncologists and other doctors who provide initial cancer treatment, but also to primary care doctors, nurses, and social workers, the report says.

Another recommendation urges federal agencies like the Centers for Medicare and Medicaid Services, NCI, the Department of Veterans Affairs, and others to support pilot programs to test new ways of delivering survivorship care. The report describes certain promising models, including one where nurses have primary responsibility for cancer follow-up and another that would set up specialized cancer survivorship clinics to deliver many types of follow-up care at one site.

Improving insurance coverage for cancer survivors is another of the report's core recommendations. Although the majority of cancer survivors are 65 or older, and thus covered by Medicare, the report describes serious gaps in the insurance safety net for other survivors. For instance, cancer survivors may be denied private health insurance in some states because of their cancer history, or may have to pay extra to receive coverage. And even insured patients may still struggle to pay for prescriptions or procedures they need.

The report recommends boosting federal support for state programs that provide insurance for residents considered "high risk" by the insurance industry, as well as expansion of federal programs that offer services like screening to low-income people. And it says government and private insurers should expand their coverage of survivorship-related care.

That recommendation is key for implementing many of the report's other suggestions, Teschendorf said.

"There's no reimbursement code for follow-up clinics now," she explained. "This is a springboard to figure out how Medicare and private insurers would pay for this type of visit."