|
|
|
|
|
|
|
|
|
|
|||||||
 |
 |
 |
 |
|||||||
|
Assessing Symptom Burden in Cancerby Joe Munch
Until recently, assessing the symptoms caused by cancer and its treatments—let alone managing them—often took a back seat to other aspects of clinical care. Typically, symptoms were not treated until after they presented in patients, and when clinicians did address their patients’ symptoms, they targeted the obvious—pain and fatigue—but tended to overlook other symptoms that interfered with their patients’ lives. As cancer patients live longer, however, more clinicians are focusing not only on prolonging life, but also on improving quality of life. And that means addressing patients’ symptoms before they become serious issues. The Department of Symptom Research at The University of Texas M. D. Anderson Cancer Center is working toward that aim by assessing and exploring possible avenues of effectively treating patients’ symptom burden—the physical and emotional toll of cancer and its treatments. The department is running clinical studies aimed at reducing or preventing symptoms in cancer patients, surveying patients to better define the characteristics and severity of those symptoms, and making an effort to understand their underlying causes. Xin Shelley Wang, M.D., M.P.H., an associate professor of symptom research, is the principal investigator for many of these studies. Much of her work focuses on the role of inflammatory cytokines in symptom burden. She and other researchers have discovered that certain symptoms seem to be correlated with each other—that they may in fact be caused by the same biologic mechanism. Investigating these mechanisms may lead to a more informed approach of treating symptom burden in cancer patients. “The goal is to target those mechanisms that cause symptom burden so we can do a better job of managing and preventing symptoms,” Dr. Wang said. The search for better data The first step in locating and targeting the biologic mechanisms that cause symptom burden in cancer patients is identifying the symptoms and treatments that cause the most distress. However, many of the symptoms that contribute to a patient’s symptom burden—like fatigue, poor appetite, and drowsiness—cannot be measured easily or objectively. “You cannot just ask a patient, ‘Do you have hypertension?’ You need to measure it by taking that patient’s blood pressure,” Dr. Wang said. “But when you ask, for example, ‘Do you have pain, and how bad is it?’ no objective measure exists—you have to trust the patient.” To better understand how symptoms interfere with patients’ lives, to better prepare patients for the symptoms of their cancer treatment, and ultimately, to use that information to help eliminate symptom burden, researchers in the Department of Symptom Research have been developing and are using symptom assessment tools—surveys designed to gauge the severity of symptoms patients experience while undergoing cancer treatments. Charles Cleeland, Ph.D., McCullough Professor of Cancer Research and chair of the Department of Symptom Research, has been at the forefront of the symptom research field for more than 20 years. In the late 1980s, while at the University of Wisconsin, he spearheaded the development of the Brief Pain Inventory, a tool that is used to assess pain and its effects on patients’ lives and that has become a major clinical trial and epidemiologic measure for pain in patients with cancer and other diseases. Later, after he arrived at M. D. Anderson, Dr. Cleeland and his colleagues developed the Brief Fatigue Inventory, a similar measure that is used to assess fatigue and its byproducts in patients. Yet, even as he and his colleagues were developing the Brief Fatigue Inventory, it became clear that pain and fatigue were not isolated problems and that patients were, in fact, experiencing a constellation of symptoms. “We thought that we still weren’t capturing the multitude of symptoms that patients have. We never will, but let’s go a little higher in the number we try to tackle,” Dr. Cleeland said. “So we did a lot of work with patients and tried to find out, at least for the patients here, what symptoms bothered them the most.” Assessing the burden To address this need, Dr. Cleeland and his colleagues in the Department of Symptom Research developed the M. D. Anderson Symptom Inventory, or MDASI, a brief, two-part, multiple symptom assessment tool modeled on the Brief Pain and Brief Fatigue inventories. On the survey, patients are first asked to rate on a 0 to 10 scale the severity of 13 “core” symptoms—pain, fatigue, nausea, vomiting, disturbed sleep, distress, shortness of breath, problems remembering things, lack of appetite, drowsiness, dry mouth, sadness, and numbness or tingling—experienced in the last 24 hours, with 0 representing “not present” and 10 representing “as bad as you can imagine.” Next, patients rate how those symptoms have interfered with six aspects of their lives—general activity, mood, work (including work around the house), relations with other people, walking, and enjoyment of life—with 0 representing “did not interfere” and 10 representing “interfered completely.” “If you just ask patients, for example, ‘Do you have any pain?’ that’s an insufficient question because it doesn’t give you any boundaries,” Dr. Cleeland said. “But if you ask, ‘On a 0 to 10 scale, what is your pain?’ patients can give you some idea of the severity of it.” Because each disease, stage, and treatment can cause different symptoms, the MDASI’s core items have been supplemented with symptoms that are specific to certain types of cancer and their treatment. For example, gastrointestinal cancer patients typically have problems with diarrhea, whereas advanced-stage lung cancer patients often use morphine and thus have problems with constipation. Neither of the symptoms is included among the core items on the MDASI, but they may seriously interfere with patients’ lives. These disease-specific “modules” enable the inclusion of disease-specific symptoms without making the surveys extremely long, as would be the case if all possible symptoms of all possible cancers were included. Data collected with the MDASI in a large patient group can be used to help predict the severity of symptoms associated with a particular cancer or cancer treatment. That information in turn can be used to help health care provider and patient alike prepare for treatment. “For instance,” Dr. Cleeland said, “for certain head and neck cancers, chemotherapy is combined with radiation therapy, whereas the treatment used to be radiation therapy alone. We can use the MDASI to show that the difference in symptom burden associated with the combined therapies is significantly worse for the patient. You wouldn’t want to stop using the combined therapy, but with that knowledge you certainly could prepare better for making the patient more comfortable.” While a handful of patients may manipulate their MDASI responses to draw attention to themselves, exaggerating the severity of their symptoms, Dr. Cleeland believes that the converse is probably a bigger problem. Patients who fear that their responses will bother the physician, instigate additional cancer treatments, or preclude them from participating in trials of experimental cancer therapies are more likely to report their symptoms as less severe than they really are. However, Dr. Cleeland said, most of the responses are thought to be accurate self-assessments. “What we have seen in 20-plus years is that the majority of patients seem to use these assessment tools in the same way, and that for the majority of patients the numbers have a similar meaning, not only in the United States but across different cultures and countries,” he said. Dr. Wang, who has been working with researchers from around the globe to validate foreign language versions of the MDASI, echoed Dr. Cleeland’s sentiments: “It doesn’t matter if your ‘5’ is equal to my ‘5’ or is equal to another person’s ‘5.’ Basically, when someone reports a ‘5,’ we observe impairment of the patient’s daily function. And when a patient goes from reporting a ‘0’ to reporting a ‘5,’ or goes to reporting an ‘8,’ for that patient, it’s a big change.” And that big change needs to be addressed before a patient winds up in an emergency room. Applications for intervention According to Dr. Cleeland, one of the advantages of the MDASI is that it is “intuitively interpretable” by patients and physicians alike. Moreover, most patients can complete the survey in fewer than 5 minutes. Its uncomplicated, straightforward design makes the MDASI easily adaptable to a computer- and telephone-based interactive voice response (IVR) system that can be used to monitor patients at home. The IVR-MDASI is designed to keep clinicians in touch with patients’ needs throughout their disease courses: The system generates automated follow-up phone calls to outpatients; when prompted by the system, a patient reports the severity of his or her symptoms by pushing buttons on the telephone keypad. If the patient reports a sudden increase in symptom severity, the IVR-MDASI alerts the patient’s health care providers so that appropriate measures can be taken to help better manage the patient’s symptom burden. “The end of the therapy doesn’t mean the end of the symptom burden,” Dr. Wang said. In some cases, she noted, symptom burden actually increases after treatment ceases. “Even for patients who do not come back to the clinic on a weekly basis anymore because they have completed therapy, we still need to address how they’re dealing with their symptoms.” Care providers rely on patients to report their symptoms. This does not present much of a problem if a patient is in the hospital and has almost constant contact with his or her care staff. However, Dr. Cleeland said, “We have shifted so much of our care to the outpatient setting. That, in turn, leaves it up to the patients to decide when they need to go in for unscheduled care, and it’s almost the rule that patients will wait way too long to do that. One of the things that intrigues us is whether, if we are monitoring these patients and finding that their symptoms are changing, we might be able to prevent some bad events from happening.” To test the feasibility of the IVRMDASI as an effective symptom assessment and tracking tool, researchers have recently incorporated it into clinical trials aimed at assessing the symptom burden in patients undergoing surgery for lung cancer, chemotherapy for non–small-cell lung cancer, and autologous blood or bone marrow transplantations. Looking forward In collaboration with other departments at M. D. Anderson, the Department of Symptom Research is doing research to determine the effectiveness of novel treatments designed to relieve patients’ symptom burden. Ongoing studies are exploring the possibility that various behavioral interventions, such as aural distraction or positive imagery, are effective at decreasing symptom burden during treatment; investigating the use of methylphenidate as an effective treatment of fatigue in breast cancer patients undergoing chemotherapy; and using functional magnetic resonance imaging to determine and measure the interaction between the activation sites in the brain that are associated with morphine, positive imagery, and pain in healthy volunteers. For her part, Dr. Wang is working with the Department of Thoracic and Cardiovascular Surgery to study the prevalence, severity, and interference of multiple symptoms in advanced lung cancer after surgery or chemotherapy. She is also investigating the role of symptom-related cytokines in lung and gastrointestinal cancer patients undergoing chemotherapy and radiation therapy. Researchers draw blood samples and correlate cytokine levels with the symptoms patients experience from therapy. The department’s research may one day lead to a clearer picture of symptom burden—and may help provide the means to target and eliminate it. In the meantime, the benefit of symptom research, Dr. Wang said, is that it sets the bar for practitioners: physicians now have a starting point when confronted with their patients’ symptoms. “So many clinical trials have been done and so many symptom management guidelines have been published, and people are beginning to understand the importance of controlling symptom burden,” Dr. Wang said. “Today, you can actually do something to keep cancer patients from suffering from their symptoms. This you could not imagine 20 years ago.”For more information, call the Department of Symptom Research at 713-745-3470 or visit www.mdanderson.org/departments/PRG. Other articles in OncoLog, February 2008 issue:
Home/Current Issue | Previous Issues | Articles by Topic | Patient Education ©2008 The University of Texas M. D. Anderson Cancer Center |
|||||||
TOP