Better Communication About After-Cancer Care Benefits Survivors

The end of cancer treatment is a significant milestone in the health care of survivors, but does not necessarily mean life goes back to the way it was before diagnosis. Cancer survivors must periodically follow-up with their doctor for physical exams, blood tests, and sometimes other procedures, which can help to tell if the cancer has come back. They may also need to manage side effects from treatment and other health conditions. However, researchers from the National Cancer Institute and colleagues have found that most survivors are not being equipped with a clear follow-up plan for their care after their cancer treatment ends.

The study, published online April 21, 2014 in Journal of Clinical Oncology, surveyed 1,130 oncologists and 1,020 primary care doctors about their discussions with survivors about handling health care needs after cancer treatment ends. Most oncologists (64%) reported that they always or almost always have these discussions with their patients. But far fewer (32%) said they gave patients information about who to see about cancer-related and non-cancer-related care. And only a small fraction, less than 5%, gave the patient a written plan for their ongoing care as a survivor. The study found oncologists were more likely to provide written plans if they had received detailed training about the late and long-term effects of cancer.

Patricia Ganz, MD, Director, Cancer Prevention & Control Research at UCLA Jonsson Comprehensive Cancer Center and an author of the study, said preparing patients for survivorship should be part of the regular training received by doctors and nurses in medical school. Ganz said it’s ironic that patients who are in the hospital for only 24 hours or less receive written information about follow-up care and medication, while patients treated with 6-9 months of chemotherapy are routinely discharged with no summary. Ganz said it’s more than just common sense; emerging studies are beginning to demonstrate that survivorship care plans are making a difference to the quality of continued health care.

The National Cancer Institute study showed that primary care doctors who received a written plan from the patient’s oncologist were 9 times more likely to discuss recommendations for survivorship with the patient than primary care doctors who received no written plan. However, only 12% of primary care doctors said they are regularly having these discussions with patients and giving them guidance about who to see for their health care needs.

Survivorship care plans

In 2006 the Institute of Medicine issued a report recommending that every cancer patient receive a survivorship care plan from their oncologist that includes guidelines for monitoring and maintaining their health. The survivorship care plan should include:

  • a written treatment summary, including drug names and dosages, as well as radiation dose, if applicable
  • an individual follow-up plan
  • recommendations about which provider – oncologist, primary care doctor, or other specialist – should be in charge of cancer-related and other medical care

Beginning next year, the American College of Surgeons Commission on Cancer will require a written survivorship care plan for patients when cancer treatment ends. The idea behind the recommendation is to give survivors greater control over their care, improve the quality of the care they receive, and increase the likelihood they’ll follow doctor’s orders.

However, studies show that most survivors are not receiving the recommended plans. A survey of 53 National Cancer Institute cancer centers found that only 43% reported giving survivorship care plans to patients. Other studies found that most survivors (62%) report having not received treatment summaries and many (42%) report having not received written follow-up instructions.

Ganz said the requirement from the American College of Surgeons Commission on Cancer will help to get more doctors offering survivorship care plans to their patients, but that it could take decades of work before care plans become routine. In the meantime, she advises patients to be proactive about asking their oncologists for the care they need.

“This is a work in progress,” said Ganz. “Patients should ask their doctors for a written follow-up care plan after cancer treatment ends. If they ask for it, they are more likely to get it.”

The American Cancer Society medical and editorial content team

Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Provision and Discussion of Survivorship Care Plans Among Cancer Survivors: Results of a Nationally Representative Survey of Oncologists and Primary Care Physicians. Published early online April 21, 2014 in Journal of Clinical Oncology. First author Danielle Blanch-Hartigan, PhD, MPH, National Cancer Institute, Bethesda, Md.

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