Programs Work Toward Transitioning Survivors to Primary Care

April 2, 2007

Oncology is undergoing a sea change. Because of sophisticated cancer screening, combined with increasingly effective treatments, the majority of cancer patients are surviving beyond the period of active treatment. As a consequence, cancer care teams are striving to confront the new—and very welcome—challenge of caring for long-term cancer survivors.

Oncology is undergoing a sea change. Because of sophisticated cancer screening, combined with increasingly effective treatments, the majority of cancer patients are surviving beyond the period of active treatment. As a consequence, cancer care teams are striving to confront the new—and very welcome—challenge of caring for long-term cancer survivors.

Today there are more than 10 million cancer survivors in the United States, but little consensus on how to provide long-term care for them. The majority of individuals diagnosed with cancer—about 66% of adult cancer patients and 80% of pediatric cancer patients—will survive beyond the period of their treatment, said Dr. Debra L. Friedman, Director of the Survivorship Program at Fred Hutchinson Cancer Research Center in Seattle. After this acute phase of treatment, patient care teams must decide how to best meet both oncology-related and non-oncology-related healthcare issues, but few mechanisms exist to assist in the transition or sharing of care between oncology, primary, and other health-care providers.

This current lack of formal coordination can have a significantly adverse effect on cancer survivors' health. Studies in Cancer and the Journal of Clinical Oncology have found that cancer survivors who saw oncology specialists were likely to be undertreated for nononcology health problems, such as diabetes or heart disease, while those who saw primary care doctors tended to have inadequate follow-up care for cancer-related problems. Those who saw both types of practitioners received a better balance of both types of services.

There is no one answer for how to best care for cancer survivors, and major cancer centers and cancer survivor organizations are experimenting with new models of care. The one aspect all models of care emphasize is the need for better communication among the oncology team, patients, and primary care providers at the end of the acute phase of oncology treatment. Such communication is a vital first step to implementing any cancer survivor care plan.

Summarizing Care Plans

The 2006 Institute of Medicine report "From Cancer Patient to Cancer Survivor: Lost in Transition" identified the lack of formalized communication between oncology and primary health-care providers at the conclusion of cancer treatment as a major barrier to the improvement of survivor care. Regular surveys performed by Blue Cross Blue Shield consistently find that only about 25 percent of primary care providers receive a detailed end-of-treatment summary from oncologists. Those that do receive such a summary report a higher perceived level of ability to deal with cancer treatment late effects and other health problems than those who did not.

Many factors contribute to the dearth of final treatment documentation. Only about 20 percent of oncology practices use electronic record keeping, and records that are electronically based are often incompatible. Oncology practices are overwhelmed and have little time for an additional step. According to Friedman, many oncologists believe they provide enough of a treatment summary on an informal basis and don't need to do more.

But as oncology becomes more and more complex, these informal communications are no longer enough. "When patients have surgery, that's a simple thing, but when they have complex multimodal therapy that might last nine months to a year, someone needs to summarize that course of care," said Dr. Patricia Ganz, Professor of Health Services and Medicine at UCLA and a member of the Institute of Medicine's Committee on Cancer Survivorship. "If you're in the hospital for even 24 hours, there's a discharge summary, but if you have nine months or a year of therapy, there's nothing."

To address this need, the Institute of Medicine recommends that oncologist assemble a one-page treatment summary that can be distributed to the patient and the primary care provider, as well as remaining in the patient's chart. Several leading cancer centers have adopted the practice.

Although there is no set format for end-of-treatment summaries, they contain, at a minimum, the following information:

• Diagnostic information

• Tumor characteristics, including site or sites, stage, and grade

• Types of treatment, such as surgery, chemotherapy, radiation, transplantation, hormone therapy

• Toxicities

• The types of support services provided, such as psychological or nutritional counseling

• Contact information for all the oncology providers

• The name of a key point of contact who will coordinate continuing care.

It is important to note that this is a summary of treatment, not a blow-by-blow account of every week of therapy, said Ganz. The idea is to provide something that encapsulates all the important information in an easy-to-use format.

The easiest time to compile this treatment summary is right when the patient is going off treatment, Ganz added. "Right now I'm seeing a lot of survivors who were treated 3 years ago, 10 years ago, even 30 years ago; we're trying to get their records and summarize what went on, to understand their problems that they're having now, and it's terribly labor intensive to do that. It's so much easier if you've just finished giving a course of chemo to somebody, or they've had radiation and chemotherapy and surgery, it's fresh in your head."

Follow-Up Recommendations

The treatment summary is only half of the package of information that should be developed when patients are finished with the acute phase of oncology care. A continuing care plan that lays out the best available recommendations for surveillance and follow-up care should also be put together.

Some of the information included on the continuing care plan is relatively straightforward. For example, there is no debate about the sort of lifestyle modification actions that can benefit any patient.

"I think everybody believes there should be cancer screening recommendations and health behavior modification recommendations," said Nancy G. Houlihan, a Nurse Leader at Memorial Sloan Kettering Cancer Center. "There is a lot of evidence about smoking cessation, physical activity, diet, and exercise, things that do help people live longer."

In addition, the care plan should include signs and symptoms of late effects, recurrence, or new cancer that both the patient and the primary care provider should be aware of.

But other parts of the treatment care plan can be more difficult to devise, because few consensus- or evidence-based guidelines for follow-up care currently exist. Until evidence-based guidelines exist, this portion of the care plan will be more difficult to assemble.

As an example, consider a patient who has received certain chemotherapy agents, such as anthracyclines, and may be at higher risk for cardiovascular disease after treatment. It is important to inform primary care providers and other members of a patient's health-care team about the risk, Houlihan said, but there are no evidence-based guidelines that say certain surveillance tests should be performed at certain time intervals.

Oncology professional societies and cancer patient advocacy groups are working to identify post-treatment guidelines that can be used by oncology groups. For example, the American Society of Clinical Oncology has made treatment plan and summary templates for colorectal cancer survivors available on its website. The society is currently developing similar templates for breast cancer survivors, Ganz said. These templates are not one-size-fits-all documents, but can be used a starting point for practices that are trying to develop their own documentation. In addition, a group of cancer centers funded by the Lance Armstrong Foundation are working on developing other web-based templates for treatment care planning.

The documents being developed are meant to be templates, a starting point that oncology teams can use to develop the sort of documents that fit their own practices. "We're not telling anybody you need to use this or that," Ganz said. "We're showing people examples and expecting that they will adapt one for their practice. Not all radiation therapists have the same summary form, and not all surgeons dictate the same operative notes—that's not the issue. The issue is these documents need to be a vehicle for communication and coordination."

Individual Needs

Ensuring that this posttreatment plan is customized to each patient's individual needs is a crucial role for oncology nurses, said Betty R. Ferrell, research scientist in City of Hope Cancer Center's Department of Nursing Research & Education. "So often people think survivorship is just about the drugs and toxicity, that a survivorship care plan would be what drugs did this person get and what scans do they need. But I think nursing is always a voice to say that a cancer survivor is a whole person who has whole-person needs," Ferrell said. "A true survivorship care plan would be one that addresses all the patient's needs, including issues such as sexuality, fertility, depression, pain, fatigue, and other issues worth mentioning for quality of life."

A key aspect of survivorship care is patient education, Ganz said. At the end of treatment, patients must understand they will be going through a transition period. They must understand how long treatment effects are likely to last, what sort of late effects to be aware of, what psychosocial needs may need to be addressed, and what lifestyle changes patients should undertake. This can be a labor-intensive process, and it is one the practice should prepare for.

After developing a cancer treatment summary and cancer survivorship plan, the next challenge for oncology teams is developing different models of care. In some models, patients continue to be seen at cancer survivorship clinics. In others, survivorship specialists within the main oncology practice take over patient care after the acute phase is completed. Other models call for patients to be transitioned to a primary care provider for all health-care needs, after a certain amount of time.

The model of care a practice adopts will depend on the risk of recurrence and late effects of the survivor population, the comfort level of primary care providers in dealing with the complex health-care needs of cancer survivors, and even the acceptance of oncologists to sharing and/or transitioning care.

Most cancer centers advocate some form of shared care between the oncology team and the primary care provider, similar to the sort of care model seen in other specialties.

"If somebody has a heart attack, even though the cardiologist may be intensively involved in the care of that patient, the internist or family doctor is going to continue to follow that patient but then refer them back to the cardiologist if there's a point at which a decision must be made," Ganz said. In oncology, those decision points may include the end of endocrine therapy, a recurrence of cancer, or a secondary cancer.

Interdisciplinary Effort

The three pillars of the community-based survivor care team are the oncologist, the primary care provider, and the oncology nurse, said Sheldon Greenfield, Executive Director of the Center for Health Policy Research and Professor of Medicine at the University of California, Irvine, and chair of the Institute of Medicine's Committee on Cancer Survivorship. Each team member's role must be defined before a patient leaves acute treatment. So for example, everyone knows who is responsible for follow-up screening such as mammograms, who is responsible for noncancer screening, such as cardiac screening, and who is responsible for symptom management and psychosocial care.

"Oncology nurses are the key to making this happen," said Ferrell. "Clearly survivorship planning needs to be an interdisciplinary effort—we need the physician to document what treatment the patient got and what are the known toxicities, we need other disciplines to participate, such as a pain management consult or a psychology consult, but we need someone in the middle to coordinate that effort. The nurse is the person who will play that pivotal role of coordinating other disciplines and really ensuring that the patient understands the plan of care and knows that there is one person that they can go back to."

Eventually, the responsibilities of the team members may shift. Memorial Sloan-Kettering, for example, has identified the 5-year mark as a time of transition for prostate cancer survivors who are at low risk of recurrence. At that time, survivors no longer need to see their oncologist on an annual basis, but are followed by their primary care physician with the understanding that communication will be maintained between providers. Instead, the results of the annual PSA are forwarded to the oncology team and the patient receives an annual letter from the oncologist, thus maintaining contact with the survivor.

Nurses interested in developing a survivorship care model in their practice should look to their current patient base to assess priorities. "You have to be flexible, but your survivors will tell you what it is they need," said Georgia M. Decker, president of the Oncology Nursing Society.

Although the momentum behind survivorship activities and transition of care is growing, those hoping to establish their own survivorship programs may face some challenges. The chief stumbling block for many is the reimbursement issue: Insurance companies do not yet reimburse for the preparation of care summaries or for the sort of extended appointments necessary to ensure survivors are getting the care and education they need.

Ganz counters that effective survivorship education is a quality of care issue, one that can't be skipped. "If you think when somebody goes off treatment you only have to spend 10 minutes with them because they're not getting treatment anymore, that's really not an appropriate assessment of the patient's needs at that point in time."

In the end, the quality of care provided by careful transition planning from active treatment to long term followup may be a necessary component of any thriving oncology practice.

While oncologists need to remain involved in their patients' care, it is important to recognize the role that primary care providers play in survivorship care.

"Everything we're doing in the way of survivorship has to recognize that we the oncology professionals intervene with some of the patients some of the time, but the ultimate good here will be when we impact, support, and inform primary care providers in terms of what they need to know," Ferrell said. "Across the country, who's really taking care of those 10 million survivors? They're going to their family practice doctor, their internist, or back to their gynecologist, and we have to find ways to communicate effectively and share resources with those primary providers."