Easing the transition for cancer patients (ASCO annual meeting)

Oncologists envision a "survivorship care plan" to help posttreatment cancer patients have a softer landing in the primary care setting by enabling the handoff of key information.

By Amy Snow Landa — Posted July 17, 2006

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Cancer survivors soon might start handing their primary care physicians a new kind of document -- one that briefly summarizes their diagnosis, the treatment they received and their follow-up care needs.

Called a "survivorship care plan," the paperwork is intended to help smooth patients' transition from active treatment with a cancer specialist to ongoing care with a primary care doctor. The goal is to better inform cancer survivors and their primary care physicians about the patient's circumstances, said oncologists at the annual meeting of the American Society of Clinical Oncology last month in Atlanta.

Currently, there is no real system for conveying that information when oncologists hand off their patients, said Patricia A. Ganz, MD, PhD, director for cancer prevention and control research at Jonsson Comprehensive Cancer Center at the University of California, Los Angeles.

Some oncologists write treatment summary notes for their patients that also outline follow-up care requirements, but others don't, Dr. Ganz said. "It's haphazard."

Unfortunately, that means many cancer survivors are left in the dark about posttreatment medical needs, said the Institute of Medicine's 2005 report on adult cancer survivors, "From Cancer Patient to Cancer Survivor: Lost in Transition."

The document found that many survivors are uncertain about how often they should see a doctor, the risks they face, what tests and monitoring should be performed, and how they can make healthy lifestyle changes that might reduce the risk of recurrence and promote wellness.

Similarly, primary care doctors often are left out of the loop about important aspects of their patients' cancer treatment and the specific care they need to stay healthy and ensure long-term quality of life.

The report concluded that quality of care suffers when patients and health professionals don't know what is expected at the end of treatment. Among the report's recommendations is that all cancer survivors receive a survivorship care plan written by their primary oncologists.

Creating a template

As part of its increased focus on survivorship issues, ASCO has partnered with the National Coalition of Cancer Survivors, the Lance Armstrong Foundation and others to develop such a plan.

ASCO is piloting a template document in selected oncology practices around the country, said Deborah Schrag, MD, a health services researcher and medical oncologist at Memorial Sloan-Kettering Cancer Center in New York. She is also the immediate past chair of ASCO's health services committee.

The template is a standard form that asks oncologists to answer a set of questions about their patients, including the stage of disease, date of diagnosis, specific treatments received, possible complications and late effects of treatment, psychosocial issues that might arise, and suggested behavioral interventions to promote patient health and well-being.

ASCO hopes to see the template widely implemented, according to Dr. Schrag. "This initiative is really about changing the culture of documentation in routine medical oncology practice."

It's a move that should be welcomed by primary care physicians, said Steven H. Woolf, MD, professor and director of research in the Dept. of Family Medicine at Virginia Commonwealth University, Richmond. "The survivorship care plan obviously plays a pivotal role in providing guidance to the primary care physician."

After all, these doctors are central to taking care of cancer survivors, but they often confront a lack of information about their patient's experience, Dr. Woolf said.

For example, the physician might not even know if a patient is a cancer survivor or may lack important details about the patient's diagnosis and treatment. The doctor also may not know exactly what the patient needs for follow-up care, in part because of the lack of evidence-based guidelines, and a plan would help to fill those information gaps, Dr. Woolf said.

But a potential barrier to widespread adoption of this concept is the lack of reimbursement for the service, said LaSalle D. Leffall, MD, a surgeon, oncologist and professor of surgery at Howard University College of Medicine in Washington, D.C.

"Oncologists are not reimbursed now for any treatment summaries or follow-up care plans," said Dr. Leffall, who also chairs the President's Cancer Panel. "There should be appropriate reimbursement for that."

Third-party reimbursement for survivorship care plans is also recommended in the IOM report.

As a step in that direction, ASCO is supporting federal legislation to establish the writing of survivorship care plans as a reimbursable service under Medicare. The society also has endorsed the "Comprehensive Cancer Care Improvement Act" (HR 5645) that was introduced in late May by Rep. Lois Capps (D, Calif.) and Rep. Tom Davis (R, Va.).

ASCO is developing a series of clinical practice guidelines for the long-term care of cancer survivors. The society in May released its first guideline on fertility preservation options for cancer patients and soon may release a cardiopulmonary guideline. Additional guidelines are in the pipeline, addressing concerns such as bone health, anxiety and depression management, secondary cancers and management of neurocognitive effects. More information is available at the society's survivorship Web site (link).

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How to survive

Key elements of a survivorship care plan include:

  • Specific tissue diagnosis and stage
  • Initial treatment plan and dates of treatment
  • Toxicities during treatment
  • Expected short- and long-term effects of treatment
  • Late toxicity monitoring
  • Surveillance for recurrence of second cancer
  • Identification of who will take responsibility for survivorship care
  • Delineation of psychosocial and vocational needs
  • Recommended preventive behaviors and interventions

Source: Institute of Medicine report, "From Cancer Patient to Cancer Survivor: Lost in Transition"

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A continuing death threat

Cancer has surpassed heart disease as the leading cause of death in the United States for people younger than 85 -- causing one in four deaths. In 2006:

  • Approximately 1.4 million new cancer cases will be diagnosed in the United States.
  • Approximately 565,000 Americans will die of cancer.
  • Tobacco use will account for more than 170,000 cancer deaths.

Source: Cancer Facts and Figures 2006, American Cancer Society

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Doctors are advised to seek hands-on training for patient-physician communication

Communicating bad news to patients is one of the most delicate and often gut-wrenching aspects of practicing medicine -- particularly when it comes to cancer.

In some cultures, a cancer diagnosis is considered so devastating that family members commonly request that it not be disclosed to the patient.

But all patients are extremely vulnerable in this situation, said oncologists at the American Society of Clinical Oncology annual meeting last month. Doctors must tread very carefully when communicating with patients and families, said Paul R. Helft, MD, an oncologist and medical ethicist at Indiana University, during an education session titled "Challenges in Patient-Physician Communication of Prognosis and Treatment Options."

Doctors should try to convey accurate and complete information but also aim to help patients and families maintain a sense of hope, Dr. Helft said. Striking the right balance and finding appropriate words is a tall order.

Unfortunately, oncologists are often not well-trained for these discussions, said Anthony L. Back, MD, a medical oncologist at the Seattle Cancer Care Alliance and associate professor of oncology and medical ethics at the University of Washington. Dr. Back also leads retreats for medical oncology fellows seeking to improve their communication skills.

He noted that a recent ASCO survey found that less than 5% of oncologists have had any formal communication training. Another survey found that most oncologists say they've learned more from "traumatic experience" than formal training.

More than just guidelines are necessary to prepare -- doctors need opportunities to practice their communication skills and receive feedback, Dr. Back said. "You have to know what to say and be able to say it."

Physicians not only need to be able to "say it" to patients, they also need to be able to communicate with their patients' family members, said Antonella Surbone, MD, PhD, associate professor of clinical medicine and professor of moral philosophy at New York University and head of the teaching division of the European School of Oncology in Milan, Italy. She was a panelist during an education session titled "Caregiving in Context: The Role of Family and Culture."

The cancer specialist's communication skills can really come into play in this kind of situation, said Lea Baider, PhD, a clinical psychologist who heads the psychosocial oncology unit at Hadassah University Medical Center in Jerusalem, Israel. On one hand, it is important to recognize that family dynamics can vary widely from one culture to another, she said. But on the other, physicians and other caregivers play an important role in guiding patients and families through the cancer experience.

"We have to teach patients and families how to deal with cancer," she said. "That is part of our task."

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External links

American Society of Clinical Oncology (link)

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