Cancer survivors are getting lost to follow-up
By Janet Colwell
Fifteen years ago, John M. Rainey, FACP, treated a young woman for osteosarcoma with radiation and chemotherapy so toxic that the patient almost quit therapy rather than endure more nausea. The treatment was successful but carried a hefty price: a second sarcoma caused by the radiation.
"Back then we didn't expect people to live that long, so we weren't very worried about late effects," said Dr. Rainey, an oncologist in private practice in Lafayette, La., who recently resumed treating the woman after she had a recurrence. "Her prognosis now is poor but the treatments are less toxic and she's not getting as sick."
Dr. Rainey's patient is one of an estimated 10 million cancer survivors in the U.S., a number that has grown due to advances in detection and treatment. But as cancer has moved from being an acute illness to a chronic condition, medical practice hasn't kept pace. Physicians now must provide ongoing care and recognize the potential late effects of toxic therapies—major challenges, given the current lack of comprehensive evidence-based guidelines for follow-up care.
Last fall, the Institute of Medicine (IOM) tackled the problem with a report entitled "From Cancer Patient to Cancer Survivor: Lost in Transition." The report detailed the major disconnect between survivors' acute treatment and their follow-up in primary care—a gap that has far-reaching health and psychological consequences.
One of the report's key recommendations is that oncologists should give cancer patients individualized survivorship care plans. Such plans—which patients could take to their primary care physician—would include guidance on how to prevent new or recurrent cancers and recognize potential late treatment effects.
"We're acknowledging that cancer is a chronic disease," said Patricia A. Ganz, MD, a professor in the Schools of Medicine and Public Health at the University of California, Los Angeles (UCLA), and a director of UCLA's Jonsson Comprehensive Cancer Center. "This hasn't always been thought of with cancer—either you were cured or you died."
During the acute phase of their disease, patients are immersed in ongoing intensive interaction with their oncologist, said Dr. Ganz, who co-authored the IOM report. But when that treatment ends, they often are left on their own to reintegrate back into primary care with no specific plan of action.
"Patients are getting lost in follow-up," said Sheldon Greenfield, FACP, director of the Center for Health Policy Research at the University of California, Irvine Medical Center, who chaired the IOM report panel. And when patients do make their way back to their general internist, the doctor "doesn't necessarily know what the person had, so has a hard time dealing with late effects and what to look for."
Creating a care plan
According to the IOM, optimal care for cancer survivors would be a comprehensive shared-care model integrated across different specialties and backed by extensive evidence-based research on what works in survivor prevention and follow-up. The IOM report made it clear that such a model should spell out which physician would provide what type of care and how that care would be coordinated—and that care should be adequately reimbursed.
The cornerstone of the shared-care model is the survivorship care plan. One simple version that oncologists could create at the end of the patient's initial treatment would be a brief summary stating the type of cancer, treatments received and potential long-term effects.
However, the IOM is urging the medical community to adopt a more ambitious long-term care plan that would detail the specific timing and content of follow-up care; list recommended preventive practices; give information on legal protections regarding employment and insurance; and map out the availability of psychosocial services.
The benefits of such a plan seem so obvious that many wonder why it is not already part of routine practice, said Dr. Greenfield. While oncologists agree with the concept, however, they hesitate to embrace something that is not formally recommended or reimbursed.
"The IOM report calls for the care plan to be systemized, reimbursed and expected," said Dr. Ganz. "The real problem is that this has not been part of our culture."
Oncologists point to the meager amount of evidence-based guidance for follow-up cancer care. Another major recommendation in the IOM report is that national health care organizations urgently need to research, develop and refine survivor guidelines that physicians can use. (See "Look to PIER for latest on cancer follow-up.")
The IOM singled out the Centers for Medicare and Medicaid Services (CMS) to produce such guidance, because more than 60% of cancer survivors are age 65 or older. Other organizations the IOM called on to conduct literature reviews to create guidelines include the Agency for Healthcare Research and Quality, professional medical organizations and private insurers.
According to Tanya Repka, FACP, an oncologist at St. Luke's Hospital in Duluth, Minn., "the guidelines that exist are mostly for recurrence of cancer. But that's not the same as a long-term plan for what physicians need to think about and worry about." In the absence of clear guidelines on what such plans should contain, "oncologists would have to come up with ideas for what the plan should be."
A former Governor for ACP's Minnesota Chapter, Dr. Repka said that many of her patients ask for a final document, and she tries to give them an informal statement. But she's constrained from doing much more. "We need the time," she said, "and we need to be reimbursed for doing the plan."
At Boston's Dana-Farber Cancer Institute, Craig C. Earle, MD, oversaw an initiative borrowed from the pediatric survivors clinic to give a written treatment summary to every adult patient. The summary is now standard practice for cancer survivors at Dana-Farber's Lance Armstrong Foundation Adult Survivorship Clinic.
Crafting those reports is time-consuming, said Dr. Earle, the clinic's medical director. Nurse practitioners spend at least an hour with patients going through the plan elements, on top of the research needed to prepare each document. But the clinic is able to bill only for nurse education and a facility fee, he said, which falls far short of covering the time it takes to pull the report together.
So far, Dr. Earle hasn't received much feedback on the reports from primary care physicians, although that may change if a proposal to export the clinic's procedures to some urban and rural health clinics is approved. But there's no doubt about the reports' value to patients.
"My initial thought was that adult patients knew what kind of cancer they had and the drugs they got," said Dr. Earle, who also served on the IOM panel, "but many patients said that they never really knew the specific terms and now carry it in their wallet all the time. It's turned out to be one of the most gratifying things we've done in the clinic."
Challenges with follow-up
Part of the problem for both patients and physicians is how to transition from an intense life-or-death situation to thinking about health maintenance and prevention.
"When you're giving chemotherapy to someone who has four months to live, they're not worried about what's going to happen to their heart 10 years from now," observed Louisiana's Dr. Rainey, who acts as primary care physician for most of his surviving cancer patients. "But if these people live, you have to go back and talk to them about the potential long-term effects."
Twenty or 30 years ago, recovery for surviving cancer patients meant short-term rehabilitation, said Dr. Ganz, who has done outcomes research with cancer patients for more than 20 years. The focus was on getting prostheses and improving function for patients who'd had limbs or breasts removed.
Now, surgeries tend to be less extensive—but the newer, more complex therapies often take longer, from six months to a year. When these patients finish treatment, Dr. Ganz said, "they still have the same psychological or physical scars, even if they didn't lose their whole breast, for example."
Late effects among survivors have become more common, due to the increasing complexity of cancer treatments.
And according to the IOM report, late effects among survivors have become more common, due to the increasing complexity of cancer treatments. The major types of treatment, including surgery, chemotherapy, hormone therapy and radiation therapy, often wreak havoc with tissues and organs.
The largest group of cancer survivors—those with breast cancer—is a case in point. Studies have shown that women who receive adjuvant chemotherapy or endocrine therapy significantly reduce their risk of recurrence and mortality even 10 years after treatment. However, these treatments also increase women's risk of premature menopause, osteoporosis, estrogen deprivation symptoms, weight gain and cognitive impairment. (See "U.S. cancer survivors by cancer type, 2002.")
While evidence-based recommendations are lacking, the IOM report suggests certain follow-up interventions based on the risks associated with different breast cancer treatments. (See "Possible late effects among cancer survivors.") Women treated with the newer chemotherapy agent trastuzumab, for example, have been shown to be at higher risk for cardiovascular disease. They therefore should undergo a symptom-directed cardiac workup and be counseled on preventive strategies for heart disease.
And while tamoxifen taken for five years can improve mortality for survivors with estrogen-receptor positive tumors, such treatment significantly increases patients' risk of developing endometrial cancer. Necessary follow-up includes an annual pelvic exam and close monitoring of any irregular bleeding.
Monitoring for recurrence, while important, is not the biggest issue in follow-up care, Dr. Repka noted. In many cases, nothing can be done to halt the progression of a recurrent tumor, but recognizing treatment side effects and taking early action can improve a survivor's quality of life.
For example, she said, young women treated with radiation for Hodgkin's disease have a higher incidence of breast cancer, so need regular mammograms at an earlier age than their peers. Prostate cancer patients treated with testosterone-suppressing hormones are at greater risk for osteoporosis, fatigue and muscle wasting, so need appropriate assessment and counseling.
Ultimately, though, "no one knows the best way to monitor these side effects," said Dr. Repka, who claimed that only piecemeal information on survivor follow-up was available.
"We're going to find other long-term effects because more and more people are living longer," she added. "We don't have 30 to 40 years of data on these drugs and their long-term effects."
And in addition to physical side effects, she added, survivors often experience significant psychosocial problems. The first few years after patients complete therapy can be particularly tough emotionally, she said, as many patients must work through depression or changes in their relationships at home and at work.
"Their families, employers and spouse all think they're supposed to be back to normal, but they're not," she said. "That's an area where primary care can help because they know the patients and can talk to them about what they're feeling."
Moving to shared care
The IOM bills the survivorship plan as a key element to bridge the transition to chronic care and initiate an ongoing partnership between the primary care physician and oncologist. But national research cited in the IOM report found that care was shared by other physicians for only 47% of cancer-related visits in 2001-2002, indicating that many patients are not engaged in a shared care model.
The model for optimal care for survivors depends upon the needs and preferences of individual survivors, said Sandra J. Horning, MD, professor of medicine at Stanford University School of Medicine in Stanford, Calif., and current president of the American Society of Clinical Oncology (ASCO). "The medical community needs to focus on coordination and seamless delivery of care," she said, "with enough flexibility to meet the different needs and circumstances of survivors."
ASCO and others are also working on creating guidance on late effects and survival care management, Dr. Horning added. "We're working on a number of guidelines ranging from risks of secondary cancers and preservation of fertility to issues of hormonal and bone health that will eventually be made available to primary care physicians."
The IOM's full slate of shared-care recommendations will take years to fully implement, as more research is needed for evidence-based guidelines and reimbursement issues work their way through Congress. In the meantime, some oncologists are already working on providing patients with a one-page treatment summary, with the idea of building upon it if crafting a care plan becomes a reimbursable service. Dr. Rainey, for example, has been discussing the idea with his staff since the IOM report came out.
"In the next year I'd like to develop a single-page form that we can have a physician extender fill out for the most part," he said. "At least it would give patients a summary to take with them so they know what drugs they've had."
It is also the critical first step to providing necessary follow-up care.
"A lot of things [survivors need] are long-range, economic or political, like employment or insurance issues," said Dr. Greenfield. "But the short-run thing that could happen is the care plan. It is extremely concrete, extremely doable and would be a huge start. That is something that could happen immediately."
The information included herein should never be used as a substitute for clinical judgment and does not represent an official position of ACP.
Look to PIER for latest on cancer follow up
While evidence is lacking on follow-up care for cancer patients, you can find the latest clinical recommendations online through the ACP's Physicians' Education Information Resource (PIER).
PIER provides specific recommendations on short- and long-term care following initial treatment for more than a dozen different types of cancer. College experts grade the quality of existing guidelines and make their own recommendations, based on the available evidence. Each PIER cancer module provides links to information on prevention, screening, diagnosis, treatment and follow-up.
PIER is online.
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