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By Joe Munch Not only do cancer patients have to contend with their disease, but they must also endure the side effects of their treatments. Physical or functional changes, psychological disturbances, and socioeconomic burdens can persist even after treatment has been completed and the cancer is considered “cured.” Cancer treatment can also increase the risk of second malignancies and cause chronic diseases. For some patients, then, surviving cancer means another journey is just beginning.
Recognizing the special challenges facing most cancer survivors, The University of Texas M. D. Anderson Cancer Center is developing a comprehensive cancer survivorship program aimed at helping those who have overcome the disease. By combining research, clinical practice, and education with outreach programs designed to integrate patients’ primary care with the care they receive at M. D. Anderson, the institution is striving to improve cancer survivors’ quality of life long after their treatment has ended. Survivorship 101 As the population of the United States ages, more people will be diagnosed with—and survive—cancer. The American Cancer Society estimates that the U.S. population will include more than 20 million cancer survivors by the year 2020. Those patients will have undergone therapies for cancer itself, yet many will not receive appropriate care for the various sequelae of cancer treatment. “Once a patient completes therapy, a lot of people might simply say, ‘Problem solved.’ Conceptually and emotionally, we want to believe that,” said Alma Rodriguez, M.D., professor and vice president for medical affairs at M. D. Anderson. “But the truth is that there are some cancer patients who get lost between the world of the cancer, where all the focus is on curing the cancer, and the world of normalcy. Many of these patients cannot make that transition because of problems arising from their treatment.” In response to a 2005 Institute of Medicine report (please see “Toward a New Definition of Survivorship,” below), M. D. Anderson President John Mendelsohn, M.D., charged a task force with developing a survivorship program at M. D. Anderson. Since then, four pilot survivorship clinics—one for gynecologic cancers, one for genitourinary cancers, one for thyroid cancers, and one for breast cancers—have been established as potential models for future survivorship clinics. According to Dr. Rodriguez, the focus of M. D. Anderson’s survivorship program is on considering—from the beginning of treatment—the consequences that treatment might have on patients’ lives. Preventing those consequences or managing them well early on better enables patients to recover after completing treatment. Even after cancer patients reach a long-term phase of survivorship, Dr. Rodriguez said, their care may be inhibited by a fragmented and poorly coordinated health care system, an absence of continuity in follow-up care, and a lack of guidance on how to maximize their own health outcomes. “The problem is that all of these services are disparate,” Dr. Rodriguez said. “At this point in time, there’s no formalized integration, no well-coordinated effort to ensure that survivors consistently or at least in an integrated fashion have access to these services. It’s a reactive rather than proactive approach to addressing patients’ problems.” Questioning this reactive approach—that is, addressing a patient’s problems only after they have been brought to the physician’s attention—is a relatively recent development in survivorship care. “Twenty years ago, oncologists did not have a good sense of how to help adults who lived many years after cancer treatment,” said Fran Zandstra, director of M. D. Anderson’s Cancer Survivorship Program. “Because of medical advances, many people are living past the first, second, and third decades after treatment. “And it’s that long-term phase that follows treatment for which we’re developing the survivorship program,” Ms. Zandstra added. “We’re taking the multidisciplinary care model pioneered at M. D. Anderson for the treatment of cancer and applying that approach to survivorship.” M. D. Anderson’s survivorship program represents patient-centered care moving from an illness-based approach to a wellness-based approach. The difference is an important one: What cancer survivors require after they have wrapped up their treatment is vastly different from what they required when they were still receiving therapy. Whereas in a cancer treatment clinic, cancer patients meet with medical oncologists, radiation oncologists, and surgeons, patients being seen in the survivorship clinics may consult nutritionists, who help design weight-managing strategies; social workers, who teach techniques to manage stress on a day-to-day basis; and health care professionals who identify and manage the late effects that can occur from cancer treatment. In addition, survivors receive counseling on monitoring for recurrent disease and health behaviors that reduce their risk for second cancers. Patients in the survivorship clinics may also see professionals who specialize in cancer-type–specific issues; for example, gynecological cancer survivors have the opportunity to meet with a sexuality counselor. “There is no such thing as a one-size-fits-all survivor program. It really needs to be tailored to the particular illness and to the particular treatments given,” Dr. Rodriguez said. “The consequences of surgery, chemotherapy, and radiotherapy are all different and all different for different tumors. The long-term sequelae patients experience depend on the treatment and the disease.” Currently, patients participating in the four pilot programs must have no evidence of disease. However, as the survivorship program grows and evolves, it will likely come to include patients who have been treated but cannot be considered cured—such as some patients with hematologic malignancies—and who will continue to be seen by their oncologists but also need the services of the survivorship clinic. “We have a lot of survivors who come to M. D. Anderson for follow-up visits with their oncologists, and those survivors’ needs may not be met because the needs of a survivor are very different than the needs of an active patient,” said Elizabeth Garcia, clinical administrative director of M. D. Anderson’s Gynecologic Oncology Center. “We want to make sure that, as a cancer hospital, we are addressing individual patients’ needs appropriately, and it might not be appropriate for a cancer survivor to be seen in a clinic that is seeing patients with active disease.” Primary care collaboration
Central to the mission of M. D. Anderson’s survivorship program is not only learning more about the long-term consequences of cancer therapies, but also learning about how cancer survivors cope with the physical, emotional, and cognitive consequences of their treatments. “As the people who give that treatment, we are the care providers who best understand the consequences of what we do,” Dr. Rodriguez said. “We have a responsibility to expand awareness and knowledge about those consequences. And as we learn more about the consequences of cancer therapies, we will be able to impart that knowledge to providers on the front lines—internists, cardiologists, or other primary care specialists—so that they can address those consequences in their own communities.” One of the driving concepts behind M. D. Anderson’s survivorship program is that patients continue to receive long-term care from their primary care providers. “The last thing we want community providers to think is that we want to take their patients away from them,” Ms. Garcia said. “We want to provide their patients with cancer treatment, send them back with appropriate recommendations, and provide follow-up care on our end as appropriate.” Indeed, some issues are not addressed in a survivorship clinic. For example, gynecological cancer survivors tend to have issues that may be caused by their cancer treatment or may be the symptoms of heart disease or hypertension. While those patients might receive support and guidance in the survivorship clinic, they would have to see their cardiologist or community physician to get a prescription for blood pressure medicine. Still, some cancer survivors may always require the services provided by a comprehensive cancer center such as M. D. Anderson. “There are some survivors who are basically healthy, who have a low risk of recurrence, and who had treatment with few consequences, and transitioning those patients to mainstream health care is completely appropriate,” Dr. Rodriguez said. “But then there are patients who have had more complex and more toxic treatments or who may be living chronically with their cancer for whom we will continue to be part of their care. Depending on the severity of the consequences of their treatment, there may or may not be providers in the community who are informed enough about cancer treatment to address those questions well.” Passport Plan for Health After patients have completed treatment, M. D. Anderson must align with the community physicians upon whom it relies to continue the care of survivors once they leave the institution. To accomplish this, M. D. Anderson did a qualitative survey of community physicians to look at the themes surrounding survivorship and what community physicians would like to receive in terms of support and education. Surveys were also mailed out to 20,000 community physicians to get feedback to help improve communication with physicians. “The community physicians we surveyed said, ‘You know, we love M. D. Anderson, but when you send us a patient with 300 pages of their records, we don’t have time to read all that. We want a page or two that tells us what happened to the patient, what to look for, and what to do going forward,’” Ms. Zandstra said. Hence, M. D. Anderson created the Passport Plan for Health, a two-page medical summary of care that explains the cancer diagnosis, the treatment(s) that the patient received, potential late effects of the treatments and recommended monitoring, and follow-up care recommendations. The document is given to the patient and sent to the survivor’s identified community provider(s). In addition, passports are uploaded to the Internet, where they can be accessed via secure connection by survivors and their health care providers. Physicians can log onto myMDAnderson.org to follow their patients as they are treated at M. D. Anderson. When a patient sees a new medical care provider, he or she needs only to log into the site to give the attending physician an accurate snapshot of his or her medical needs as a cancer survivor. “Today, patients are a lot more savvy than in the past, and they know a lot more about their own health and the treatments they’ve had,” Ms. Garcia said. “But you still need provider-to-provider communication. Patients can generally remember the kinds of cancer they have and their treatments, but they may not remember how many rounds of treatment they went through, they may not know all the drugs they’ve had, and they may not recall their most recent lab values.” Even when patients are in active treatment, their community physicians will be able to see the dictated physician notes, test results, radiology reports, and other pertinent information in real time. This is one way in which M. D. Anderson hopes to collaborate with community physicians to provide their common patients with exceptional care. “There needs to be a partnership,” Ms. Garcia said. “That’s why we produce tools like the Passport Plan for Health and myMDAnderson for communication with community providers, to make sure that we’re partnering with them and that together we’re taking care of these survivors in the best possible way.” On down the road In the gynecological cancer survivorship clinic, patients are given a “Survivorship Award” to commemorate their transition from active cancer care to survivorship. For many patients—and their M. D. Anderson physicians—the moment is a bittersweet one. “Our patients develop relationships with their providers that go on for years— literally, for 5 years—and then their providers need to send them on. Even though these providers are still involved in their patients’ follow-up, they no longer actually provide hands-on care, and that’s difficult after having established a relationship that is so special and deep-seated,” Ms. Garcia said. “But it’s also difficult for those same providers, when they are already seeing 30 active cancer patients in the clinic each day, to make the time to address survivors’ needs as well.” Although the emotions surrounding a patient’s transition to long-term survivorship may be mixed, the motivation behind M. D. Anderson’s survivorship program is not. “We want to be the benchmark for survivorship care,” Ms. Zandstra said. “And we have an obligation to the patients we’ve treated—we were there with them through their diagnosis and treatment, and we don’t want them to feel as though they’re falling through the cracks after they’ve completed treatment.”
For more information, contact Dr. Rodriguez at 713-792-2860, Ms. Zandstra at 713-745-8717, or Ms. Garcia at 713-792-6864, or log on to myMDAnderson.org. Parts of the Institute of Medicine report mentioned in this article can be found online at www.iom.edu/?ID=30869. Other articles in OncoLog, September 2009 issue: Home/Current Issue | Previous Issues | Articles by Topic | Patient Education ©2009 The University of Texas M. D. Anderson Cancer Center |
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