Assessing Symptom Distress
Network - Spring 2007
Are you afraid to complain of symptoms for fear your doctor will think you’re not a “good” patient?
Do you fear that mentioning side effects will distract your oncologist’s attention from caring for your cancer?
Are you reluctant to tell your doctor that treatments have affected your ability to function, feeling you already take enough medications and don’t want to add to the load?
Or do you refrain from admitting to any symptom that might point to the possibility of a recurrence?
Not sharing your problems with your doctor is one of the major barriers to good symptom control and can be detrimental both to your quality of life and your ability to function.
“Often exchange about symptoms, if there is any, is informal,” says Charles Cleeland, Ph.D., chair of M. D. Anderson’s Department of Symptom Research. “It becomes a social interaction and doesn’t get recorded. Often patients don’t say anything while clinicians don’t always remember to ask or they wait until the patient spontaneously complains before giving a formal assessment.”
Now there’s a measurement tool to help both patients and clinicians address the issues of symptom burden.
Developing a symptom assessment tool
In 2000, Cleeland and his group presented the M. D. Anderson Symptom Inventory, known as MDASI, a brief measure of the severity and impact of cancer-related symptoms, in an article in the journal Cancer, “Assessing Symptom Distress in Cancer Patients.”
However, long before this paper and long before the Food and Drug Administration began to ask for more rigor in the assessment of treatment side effects, Cleeland had dedicated his research to identifying what patients experience due to their disease and treatment.
He was instrumental in bringing international attention to the reality of pain, leading several important initiatives — including a nationwide one with Veterans Administration hospitals — and helping design the pain chart that helps patients describe more effectively to their health care team the amount of pain they are experiencing.
At M. D. Anderson, he set out to broaden that scope and look at all symptoms affecting those dealing with cancer. To gather that information, he and his colleagues needed a viable measurement tool that would help clinicians identify and assess the most common and predictable symptoms that those who had been through or were in cancer treatment experienced.
“Everyone thinks they can design a questionnaire overnight,” he says. “But there is some science to it. We insisted that it be brief so it wouldn’t tire patients, and that it be intuitively understood so it could contribute something to their care.”
They first generated a list of 26 symptoms working from various other symptom scales and from a work group comprised of medical and radiation oncologists, oncology nurses and symptom management specialists. Then, they recruited three different groups of patients for the study: an initial outpatient sample, an inpatient sample and an outpatient sample for cross validation of the measure. Finally, they used several methods to reduce the number of core symptoms.
They also wanted to identify how much these symptoms had interfered with different aspects of a patient’s life in the previous 24 hours.
The symptoms and daily activities affected
The final product, the M. D. Anderson Symptom Inventory, identifies the following 13 side effects as occurring most frequently and being the most distressing for patients: pain, fatigue, nausea, disturbed sleep, feelings of being distressed (upset), shortness of breath, remembering things, lack of appetite, feeling drowsy (sleepy), having a dry mouth, feeling sad, vomiting and numbness or tingling.
Daily activities which they identified as possibly affected by these symptoms were: general activity, mood, work (including work around the house), relations with other people, walking and enjoyment of life.
For both the core symptoms and the interferences, MDASI poses questions about the level at which these are affected. Patients, in turn, answer on a scale of 0-10, 0 meaning not affected at all, 10 as bad as you can imagine.
Cancer-specific measurements — thyroid cancer
The goal of Cleeland and his team was to take their initial inventory of core symptoms that each cancer patient might experience and develop additional modules identifying disease- and treatment-specific symptoms and toxicities.
One of the first was an inventory for thyroid cancer, which tends to become a chronic disease fraught with side effects. Margaret Harle, a research oncology nurse, helped develop the MDASI-Thy.
“What we have done as we develop these modules is interview 20-30 patients and ask them what symptoms they are dealing with,” she says. “Then we look at the data and see what the top five or six symptoms are and add them to our core module. Our next step will be to test the tool on 50-100 patients to make sure the content is valid.”
In developing the module on thyroid, Harle worked with 21 patients, who helped her identify six additional, disease-specific symptoms: hoarseness, problems with feeling hot, problems with racing heartbeat, problems with feeling cold, difficulty swallowing and diarrhea or loose stools.
Cleeland’s group is now working across the institution on other modules that are in various stages of development. These include symptom inventories for patients with brain tumors and cancers of the head and neck, those who have suffered cardiac problems due to treatment, as well as patients who have undergone bone marrow transplants.
By providing clinicians with the numerical ratings of these symptoms and their severity, MDASI can help clinical staff assess and make informed, rather than anecdotal, decisions about symptom treatment. Also, it can allow for earlier detection of symptoms, rather than letting them become so severe that they lead to hospitalization or emergency room visits.
Editor’s note: Future issues of Network will look at the new inventories being developed as well as how new technologies are improving the ability of patients to report symptoms so clinicians can intervene earlier in their treatment. One such study currently works with lung cancer patients and will be featured in the summer issue of Network.
Network - Spring 2007
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