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Assessing Symptom Distress: It's All About the Patient

Conquest - Summer 2007

By Sandi Stromberg

Cancer survivors know best what the side effects of cancer and its treatments are. Yet, they often lack the words to describe what they feel and the appropriate tools for self-reporting.

Charles Cleeland, Ph.D., and Xin Shelley Wang, M.D., believe that the severity and impact of cancer-related symptoms shouldn’t be overlooked. The newly developed M. D Anderson Symptom Inventory will help ensure this doesn't happen.

Still other barriers may inhibit them, like wanting to be “good” patients who don’t complain; who think that talking about anything else will distract their oncologist’s attention from the cancer; who dread being given more medication; or who worry that symptoms might indicate a recurrence.

The lack of proper measurement tools and the presence of patient fears are concerning to Charles Cleeland, Ph.D., chair of M. D. Anderson’s Department of Symptom Research. An early leader in the field of symptom burden, he was instrumental in the design of the pain questionnaire that helps patients describe more effectively the amount of pain they are experiencing. He also has brought international attention to the reality of pain, leading several important initiatives, including a nationwide one with Veterans Administration hospitals and another at M. D. Anderson in 2001. He also helped organize a cancer pain relief effort in China, together with the Chinese Ministry of Health.

In the last few years, he has broadened that scope, working to develop a viable measurement tool to help clinicians identify and assess the most common and predictable symptoms of cancer and its treatments. At the same time, this has provided language that allows patients to describe what they are feeling.

“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.”

Narrowing general symptoms

Cleeland’s group 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.

The final product, the M. D. Anderson Symptom Inventory (MDASI), 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, not remembering things, lack of appetite, feeling drowsy (sleepy), having a dry mouth, feeling sad, vomiting and numbness or tingling.

Daily activities 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.

Moving from general to specific

“One of our aspirations when we did the MDASI was to develop additional modules that would focus on specific diseases, stages of disease and treatments,” Cleeland says. “We have a formal network working on these modules, an exciting set of people from several departments across the institution.”

Among them is Terri Armstrong, D.S.N., an advanced practice nurse in the Department of Neuro-Oncology. She had been with the department only a short time before realizing patients with primary brain tumors were having similar experiences. That made her acutely aware that an aspect of the disease wasn’t being addressed – the symptom burden.

When it comes to evaluating the symptom burden of patients with brain tumors, Terri Armstrong, D.S.N., is the go-to person. Using the general M D. Anderson Symptom Inventory model as her guide, she’s capturing the symptoms that are more specific and important to these individuals.

“It’s common for people to go from normal, working lifestyles and doing fine to having a sudden event like a seizure and being thrust into this world of brain cancer, often with residual deficits,” Armstrong says. “Problems with strength or sensation or ongoing seizures can be devastating.”

Interested in the impact of brain cancer on quality of life, Armstrong began a literature review. She was amazed to discover that what little was known about the symptom burden of this patient population was from studies with data from as early as 1924.

At the same time, she decided to work toward a doctorate degree in nursing at The University of
Texas Health Science Center at Houston, School of Nursing. Her advisor and mentor, Marlene Cohen, Ph.D., also a professor at M. D. Anderson, introduced her to Cleeland’s work.

“At first, I wanted to go in and do things to help people, but then I realized we don’t really understand their problems,” she says. “It was hard to step back, but that’s where Dr. Cleeland’s group is so helpful. Through them, I learned we have to understand the issues first so we can target interventions.”

Gathering symptoms of primary brain tumors

While she knew that the core MDASI developed by Cleeland’s group was an important tool for measuring the severity and impact of cancer-related symptoms in general, she also knew it didn’t address many of the specific symptoms of those with primary brain tumors.

“I wanted to add something to the existing instrument and try to capture the symptoms that were
important to this group,” she says.

Somewhat the same as in the development of the core MDASI, Armstrong put together panels with members from both inside and outside M. D. Anderson. These included people from nursing, social work, neuro-psychology, physical therapy, radiation, neuro-oncology and neurosurgery, as well as patients and their caregivers.

“We learned a lot,” she says. “One striking aspect was the issue of pain. Many of the physicians
said their patients didn’t complain about pain. But we found that patients on the panel used other words. They would say, ‘I have pressure in my head’ or ‘I have a sensation in my head.’”

She also learned what she was wrong about. For example, she didn’t think patients with primary
brain cancer had shortness of breath, but learned that 20 percent do.

“One of the most important things we learned was something we had suspected but had no way
until now to verify,” she says. “People’s symptoms can predict when their tumor is growing.”

Melanoma patients were among the first to complete the M. D Anderson Symptom Inventory questionnaire, listing the frequency of their symptoms and the ones they felt were most distressing.

Final inventory

The final inventory for patients with primary brain tumors was narrowed to 18 symptoms divided into three categories:

Eight focal symptoms – weakness on one side of the body, changes in body sensation and in vision, difficulty understanding, speaking, remembering, starting or completing tasks, walking

Five generalized symptoms – headache or pressure in the head, seizures, change in seizure activity, difficulty concentrating, sleepiness

Five treatment and medication-related symptoms – changes in appearance, appetite and bowel
pattern, irritability, fear

Currently, patients in certain clinical trials complete a questionnaire listing these symptoms on the same scale as the general MDASI.

“These instruments are such a good thing because they force us to address these questions. If we use Dr. Cleeland’s instrument and this module, they make us ask: How severe is it? How does it impact a patient’s daily life,” Armstrong says. “It facilitates communication.”

© 2015 The University of Texas MD Anderson Cancer Center