The first nationwide survey of physician knowledge and attitudes about caring for patients who have completed cancer treatment revealed a wide communication gap between oncologists and primary-care physicians (PCPs). The divergence of opinion about who should care for patients after cancer treatment suggests that recent efforts to coordinate care through written survivor care plans are not working.

Early results of the Survey of Physician Attitudes Regarding the Care of Cancer Survivors (SPARCCS), published online July 22, 2011, in the Journal of General Internal Medicine , clearly demonstrate that oncologists are uncomfortable about transferring care of cancer patients to PCPs—or even participating in a shared-care model, as some have suggested.

“Some of these results are quite stunning,” said Julia Rowland, Ph.D., director of the Office of Cancer Survivorship at the National Cancer Institute and one coordinator of the survey. “While [PCPs] feel that they could deliver quite a bit of this care, they don’t feel very confident in their knowledge. And on the flipside, oncologists are saying, ‘We don’t think [PCPs] are qualified or have sufficient knowledge to deliver this care.’”

SPARCCS, which NCI and the American Cancer Society cosponsored, surveyed a random sample of 3,600 American Medical Association–registered PCPs and oncologists in 2009. The survey asked specifically about care of breast and colon cancer survivors because those cancers have many survivors and because evidence-based guidelines are in place to follow up with them. Only one in four surveyed oncologists strongly or somewhat agreed that PCPs have the necessary skills to provide follow-up care for breast cancer, leading them to prefer oncologist-led follow-up care (57%), with only 16% choosing a shared-care model and 2%, a PCP-led model. In contrast, most PCPs (59%) said they had the skills necessary to care for cancer survivors. Nonetheless, only 10% preferred a PCP-led model, with 38% preferring a shared-care model and 25% wanting oncologists to take the lead.

“What we are seeing in this SPARCCS survey is the siloing of cancer care,” said Patricia Ganz, M.D ., director of the Division of Prevention and Control Research at UCLA’s Jonsson Comprehensive Cancer Center and coauthor of the Journal of General Internal Medicine report. “[PCPs] have their scope of work, and oncology has not been part of their scope of work because we take those patients away from them.”

Patricia Ganz, M.D.

Patricia Ganz, M.D.

This practice has to change, according to Ganz, because of population demographics. Most people who are going to be diagnosed and treated with cancer in the coming decades will be in their 60s or older, she pointed out. “They are coming in with diabetes and heart disease and other comorbid diseases. For the oncologist to manage all of those other things is impractical; it would be better to share some of that care.”

Still Lost in Transition

In 2005, the Institute of Medicine (IOM) attempted to draw attention to the particular needs of cancer survivors with their report From Cancer Patient to Cancer Survivor: Lost in Transition . The book generated much enthusiasm for creating survivorship care plans, written summaries of care that were to accompany patients from their oncology care through their postcancer transition. The IOM publication specified a comprehensive report that would include the expected course of recovery from toxic treatment, the need for adjuvant therapy, a schedule of recommended follow-up tests and screenings, information on possible signs of recurrence, and a long list of recommendations for psychosocial support and behavioral interventions for health promotion and disease prevention. Oncology professional organizations such as the American Society of Clinical Oncologists (ASCO) consider written care plans part of the standard of care for cancer patients. Now, however, those who tried to implement these plans are realizing that they are not working as envisioned.

“Treatment summaries and care plans are not working because they are far too cumbersome,” said Paul Han, M.D., a survivorship researcher at the Center for Outcomes Research and Evaluation at the Maine Medical Center Research Institute in Scarborough. “This is really an area of a lot of work now. People are trying to figure out how to do this better.”

Ganz, an early proponent of written care plans, says that her efforts to get an electronic template for survivorship care into every oncologist’s office through a collaboration called Journey Forward ( http://journeyforward.org/ ) met with almost immediate resistance.

“What we learned very early on is [that] the average oncologist says, ‘You know what, nobody is paying me to do this; I don’t have any staff,’” she said. “And it became clear to me the grassroots oncologist was not going to do this.”

In addition to making these tools available, Ganz has focused her efforts on medical students. If medical schools train oncologists to work collaboratively with PCPs to create survivorship care plans, she said, younger practitioners will take these skills out into the community.

Another idea, according to Han, is to produce general guidelines that could be disseminated through electronic decision support systems and made available at the point of care rather than tailored to each patient.

“Using clinical decision support and the [electronic health record] and trying to give people bulleted guidelines and things like that may be far more efficient than producing these big, beautiful documents that are expensive and time-consuming to produce; and we don’t even know if they are going to be utilized effectively by physicians,” Han said.

Indeed, whether patients benefit from formal care plans is unclear. One of the first direct comparisons of written care plans versus standard discharge summaries—presented by principal investigator Eva Grunfeld, M.D., D.Phil., of the Ontario Institute for Cancer Research in Toronto at the March 2011 ASCO annual meeting—found no differences in subsequent patient care or well-being between patients with formal care plans and those without them.

Moving Forward

As Craig A. Bunnell, M.D., and Lawrence Shulman, M.D., of the Dana–Farber Cancer Institute in Boston, pointed out in the December 2010 issue of Oncology , changing demographics and a projected shortage of oncologists could soon cause a scarcity of care for cancer patients. With 12 million cancer survivors and growing, the U.S. health care system will need to come to grips with the inevitability of transferring the care of patients after cancer treatment.

“If we don’t do a better job removing survivors from the oncology practice, there won’t be enough room for new cancer patients,” said Ganz. “Part of that is to reassure them that they don’t need an oncologist the rest of their lives, and that means we have to beef up the self-confidence and self-efficacy of the [PCP].”

The Kaiser Healthcare system in California provides one potential model. Lou Fehrenbacher, M.D., an oncologist at Kaiser Permanente Medical Center in Vallejo, Calif., said his group is overhauling its cancer survivor care. A few years ago, internal quality-improvement efforts showed duplication of services and the lack of a structured pathway for cancer patients who completed treatment. A new electronic health record system is allowing Kaiser to implement guidelines and reminders, as well as a new structured system that spells out which providers do which exams and tests, to reduce duplicated effort, he said. He is also available to PCPs within Kaiser’s medical records system for consultation if any questions arise about follow-up care.

Fehrenbacher said he often fields three to five questions daily from PCPs about side effects of cancer treatment and which screening tests—such as bone density scans, X-rays, and mammograms—are recommended for cancer survivors, but he feels that open communication has helped ease the transition for patients and their doctors. He said after the system has been in place for 3–4 years, the group plans to reevaluate care coordination and whether costs for occurrences such as duplicated tests and exams have been reduced.

Along these lines, Larissa Nekhlyudov, M.D., assistant professor of population medicine at Harvard Medical School and a general internist at Harvard Vanguard Medical Associates, suggests that cancer survivors should be stratified according to risk of recurrence and late effects of treatment. Patients such as an early-stage breast cancer patient who is at low-risk of recurrence should be able to return to PCP care, provided that their doctors have the surveillance information they need.

Both physician groups in the SPARCCS survey overused chest X-rays and computed tomography scans, but PCPs also reported using imaging tests, such as bone scans and magnetic resonance imaging, which the evidence-based guidelines do not recommend.

Nekhlyudov suggests offering a source of information to which PCPs can go to find evidence-based guidance, such as the U.S. Preventive Services Task Force recommendations. “PCPs don’t follow ASCO guidelines,” she said. “They need to be driven to them by other means.”

Fixing the problem should be simple, said Sheldon Greenfield, M.D., professor of medicine at the University of California, Irvine, and lead author of the IOM committee that in March 2011 released the “gold standard” for clinical practice guidelines ( http://iom.edu/reports/2011/clinical-practice-guidelines-we-can-trust.aspx ). First, ASCO and the National Comprehensive Cancer Network have to harmonize their guidelines, and then they need to offer that guidance to PCPs, he said. “Once they have the guidance, they’ll do the job.”