It's tough to navigate return from cancer care to primary care

An Institute of Medicine report suggests that patients are becoming lost in transitions between oncology and primary care. Educating physicians is a key to overcoming many of the barriers.

Both the general medicine and oncology communities have paid increased attention in recent years to the transition of cancer patients back to their primary care physician (PCP) after active cancer treatment has been completed.

In 2005, the Institute of Medicine (IOM) released a report titled “From Cancer Patient to Cancer Survivor: Lost in Transition,” which suggested that the existing system was failing many cancer survivors as they moved from active care with an oncologist to survivorship care with a primary care physician.

An Institute of Medicine report suggests that patients are becoming lost in transitions between oncology and primary care Educating primary care physicians and oncologists is a key component to overc
An Institute of Medicine report suggests that patients are becoming lost in transitions between oncology and primary care. Educating primary care physicians and oncologists is a key component to overcoming many of the barriers. Photo by LiquidLibrary

“It is currently estimated that there are nearly 12 million Americans that are cancer survivors, and this number is expected to increase with the aging of the population,” said Katherine Virgo, PhD, MBA, managing director of health services research at the American Cancer Society's national home office in Atlanta. “This increasing aging population combined with predicted shortages of PCPs and oncologists will present unique challenges to making sure that cancer survivors receive high-quality cancer survivorship care.”

Such high-quality care is a complicated, multifaceted concept that includes a wide range of needs, encompassing general health, psychosocial issues, possible late effects or consequences of treatment and disease, and risk for disease recurrence or secondary cancer, according to the IOM report.

“The IOM report shined a light on the fact that these patients were getting a bit lost,” said ACP Member Larissa Nekhlyudov, MD, MPH, assistant professor in the department of population medicine at Harvard Medical School in Boston and a general internist at Harvard Vanguard Medical Associates. “The patients that transition to primary care do not necessarily get proper oncology care, and those that stay on in an oncology setting do not get the necessary primary care.”

Progress has been made, but six years after the release of the IOM report, many barriers to this transition of care still exist, experts said.

Establishing communication

One major barrier to successful transition is fragmentation of care within the current health care system. This impedes communication, according to ACP member Elaine Schattner, MD, clinical associate professor of medicine at Weill Cornell Medical College in New York. Many cancer patients, especially those who live near major cancer centers, choose to receive treatment at hospitals where their primary care physicians aren't affiliated, she said.

“People select cancer specialists for a variety of reasons,” she suggested. “They may seek out a particular expert, need someone who accepts their insurance, or choose a convenient location. But care at a cancer center is unlikely to be connected, at least electronically, or coordinated with their primary care physician's office or medical center,” she said.

Although cancer care begins within primary care, often the oncologist may not even know who the primary care physician was by the time the patient completes treatment, Dr. Nekhlyudov added.

“They have been taken out of the [carbon copy] list, so to speak,” she said. “In addition, when patients are seen in different health care systems, the lack of communication is exacerbated. PCPs can't access the oncology medical records and it is more difficult for an oncologist to follow up with a PCP.”

A lack of communication is probably directly related to a lack of coordinated care. Several recent studies have indicated that primary care physicians and oncologists disagree on their defined roles and responsibilities in the treatment of cancer survivors.

SPARCCS, the Survey of Physician Attitudes Regarding the Care of Cancer Survivors, which was conducted by the National Cancer Institute and the American Cancer Society in 2009, was designed to compare attitudes, knowledge, roles and usual practices of primary care physicians and oncologists regarding follow-up care. The survey focused specifically on care for breast and colon cancer survivors.

“A lot of the questions we were asking were largely in response to IOM recommendations. Specifically, the idea that greater coordinated care ought to occur and some of the mechanisms suggested to achieve that,” said ACP Member Paul K. Han, MD, clinical investigator at the Maine Medical Center Research Institute, assistant professor of medicine at Tufts University School of Medicine, and a SPARCCS investigator.

The results of one initial analysis of data from the SPARCCS survey were recently published in the Journal of General Internal Medicine. The study found that primary care physicians lacked confidence in their knowledge of the follow-up care of breast and colorectal cancer patients, and oncologists not only shared this opinion of PCPs' knowledge but preferred a follow-up care model that was oncologist-led.

Earlier this year at the annual meeting of the American Society of Clinical Oncology, Dr. Virgo presented additional data from SPARCCS in her own study. She found that primary care physicians said they lacked adequate training and knowledge to follow cancer survivors beyond five years.

“PCPs were much less confused about who should be providing basic preventive care services,” Dr. Virgo said. “On this issue, medical oncologists were more uncertain if they should be providing preventive services while seeing patients for cancer treatment visits or whether these services were already being provided by the PCP.”

Finally, the sheer amount of knowledge that is involved in treating a cancer survivor is another huge barrier. In its report, the IOM suggested that “[P]roviders need to be apprised of the risks of cancer treatments, the probabilities of cancer recurrence and second cancers, the effectiveness of surveillance and interventions for late effects, the need to address psychosocial concerns, the benefits to patients of prevention and lifestyle changes and the complexities of integrating survivorship concerns with care for other chronic conditions.”

“All of this is in addition to the management of general health and any other comorbid conditions that the PCP is already handling,” said Dr. Virgo. “That is a lot to handle in a short visit. In addition, many PCPs feel they lack the appropriate training and knowledge to provide adequate survivorship care.”

Overcoming barriers

Educating primary care physicians and oncology providers, as well as empowering patients, are key components to overcoming many of the barriers in transitioning care. This includes increasing the availability of evidence-based guidelines on cancer survivorship, providing additional opportunities for continuing medical education on the topic and increasing collaboration between primary care physicians and oncologists.

One step the IOM proposed to help ease the transition was to, at a minimum, provide cancer patients with a treatment summary when they stop active treatment, and ideally, a comprehensive survivorship care plan.

“A treatment summary is a document that summarizes any cancer-relevant history of the patients,” Dr. Han explained. “A follow-up care plan is a set of recommendations that can be given to the PCP and the patient to help guide future care and surveillance.”

However, the application and effectiveness of survivorship care plans are still somewhat unknown. In Dr. Han's study, data indicated that although oncologists said they provided follow-up care plans to primary care physicians a majority of the time, PCPs reported receiving them only a minority of the time.

“I think the best solution is for oncologists to partner with PCPs in developing ways of improving survivorship care,” Dr. Han said. “Although it's an ‘oncology’ problem, oncologists are only one side of the equation. The PCP community needs to be at the table to provide feedback and help develop solutions.”

Available resources

Until a more effective, widespread solution is developed, there are resources, however limited, to help internists learn more about cancer survivorship care.

“One good resource that is available, and will soon include more and more information, is Up to Date, which is an online educational resource that PCPs use in their offices,” Dr. Nekhlyudov said. “There is now a small section on cancer survivorship, and more chapters are being written focusing on the topic.”

Other resources exist within the oncology community but are readily accessible by primary care physicians. (See sidebar, “Additional resources.”) The American Society of Clinical Oncology houses information on cancer survivorship on its website, and has recently formed a committee to work to improve survivorship care. The American Cancer Society and the National Cancer Institute jointly co-sponsor a cancer survivorship conference every two years that allows the research community to come together to discuss the issue. Finally, the American Board of Internal Medicine offers oncologists a medical oncology Certification and Maintenance of Certification (MOC) program for physicians who want to be certified in the subspecialty.

“This transition is going to become more and more important in the coming years,” said Dr. Schattner. “It makes sense, in terms of our health care system, to transition these patients to doctors who are less focused on their cancer, and more focused on their general well-being.”