National Cancer Institute NCI Cancer Bulletin: A Trusted Source for Cancer Research News
April 7, 2009 • Volume 6 / Number 7

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Featured Article

Cancer Survivors and Their Doctors Have Different Expectations about Care

A physician from NCI's Urologic Oncology Branch speaks with a patient. A physician from NCI's Urologic Oncology Branch speaks with a patient

As highlighted by a recent report from the Institute of Medicine, the approximately 12 million cancer survivors living in the United States have a complex set of medical needs that must be met in addition to regular care and screening. Now, a new survey of oncologists, primary care physicians, and their patients finds that it is not always clear who is responsible for meeting the medical needs of cancer survivors. And, according to the study authors, these discordant expectations about long-term health management likely complicate the care received by cancer survivors.

The study was published online March 30 in the Journal of Clinical Oncology.

Patients in the study, led by Dr. Craig Earle from the Institute for Clinical Evaluative Sciences in Toronto, Canada, had higher expectations than their oncologists that the oncologists would regularly participate in noncancer-related survivorship care, including routine screening for other cancers. In contrast, primary care practitioners had higher expectations than their patients for their involvement in survivorship care, including follow-up monitoring and treatment for the patients' primary cancers.

Online resources to help assemble a survivorship care plan

ASCO Cancer Treatment Summaries and Survivorship Care Plans
These downloadable forms help breast and colon cancer survivors assemble a care plan; forms for additional types of cancer are coming soon. ASCO also provides summary forms for doctors to record treatments, which can be shared with others involved in follow-up care.

Lance Armstrong Foundation Survivorship Worksheets
Several tools can help cancer patients organize information about their care, including a Cancer Survivor's Medical Treatment Summary (PDF - 842KB), which contains sections for suggested follow-up care.

OncoLife Survivorship Care Plan
This online tool helps patients and their healthcare teams keep track of cancer treatments received. The tool then generates a list of potential late side effects of treatment that patients and their doctors should monitor.

National Coalition for Cancer Survivorship
Elements of a successful survivorship care plan are listed here. The coalition's Web site also includes the Cancer Survival Toolbox® module, an audio teaching program that includes survivorship issues.

Institute of Medicine Survivorship Care Fact Sheet (PDF - 88KB)
This document outlines the elements that should be included in a survivorship care plan, as well as questions that patients should ask their health care providers.

"My interest in survivorship grew out of the observation in the clinic that patients would ask me things like, 'Is my thyroid dose right?' or 'How's my cholesterol?' and expected that I would do this type of routine care, when in fact I was just following them for their colon cancer," explained Dr. Earle, an oncologist. "That got me wondering: If they think I'm doing these things and I don't think I'm doing them, is necessary care falling through the cracks?"

Dr. Earle and his colleagues recruited 431 survivors who had received at least part of their cancer treatment at the Dana-Farber/Brigham and Women's Cancer Center in Boston, MA, along with 255 primary care physicians and 123 oncologists who had participated in those patients' care.

Patients answered questions about the degree of responsibility that they believed their oncologist and primary care physician should take in four main areas of survivorship care: surveillance of their cancer, screening for other cancers, general preventive health, and ongoing management of other health problems. Both oncologists and primary care physicians answered questions about their perceived roles in the same four areas.

The agreement in expectations between patients and physicians ranged widely, from 29 percent to 91 percent between patients and oncologists and from 35 percent to 92 percent between patients and primary care physicians. Expectations between oncologists and primary care physicians were discordant, with only 3 percent agreeing on who should be responsible for primary cancer surveillance and 44 percent agreeing on who should be responsible for routine cancer screening.

"We found that there are uncertainties surrounding the perceived responsibilities of physicians and the delivery of care to cancer survivors, especially with respect to primary cancer follow-up and screening for other cancers," the researchers concluded. "With a lack of clarity about which provider is responsible for care, patients may not receive necessary services of demonstrated benefit."

This study highlights the urgent need "for some sort of survivorship care planning," said Dr. Earle. "It all comes down to communication and making sure that whoever is involved knows who is going to be taking responsibility for what actions going forward. We need to provide primary care physicians with actionable information about the specific patients they have in their practice, and we as specialists are able to provide that sort of expertise and those recommendations."

"As the Institute of Medicine pointed out, it's important to develop a care plan," agreed Dr. Noreen Aziz, senior program director of NCI's Office of Cancer Survivorship in the Division of Cancer Control and Population Sciences. "One of the aspects of that plan should be to outline who is responsible for what aspect of care, so that everyone is on the same page. Developing such a care plan would be a terrific idea, and I think that the [oncology] field is moving towards that."

—Sharon Reynolds