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Survivorship Issues: Measuring the Immeasurable

Network - Fall 2007


One day, doctors will be able to tell patients exactly what side effects they will experience after surgery, radiation or chemotherapy. Better yet, they will have effective interventions to alleviate these symptoms. But best of all, they will understand the biologic mechanisms that occur during cancer and cancer treatment that may allow them to prevent or predict side effects.

While that day may be far away, the Department of Symptom Research at
M. D. Anderson has begun the scientific work that will improve the quality of life of cancer patients in the 21st century.

With the MDASI-Lung, radiation oncologist Zhongxing Liao, M.D., has learned more about the symptoms her lung cancer patients may experience during treatment so she can help them know what to expect.

Until now, oncologists have focused their attention on discovering new treatments for the disease rather than tools to help understand and measure the symptom burden patients experience during and post-treatment. Charles Cleeland, Ph.D., chair of the Department of Symptom Research, and his team are working to change that. While it’s a long journey from scientifically identifying symptom distress to discovering the biologic mechanisms that cause these symptoms and creating interventions, they are taking the first steps.

One of several collaborations they have undertaken across the institution is with physicians, advanced practice nurses and mid-level providers treating patients with non-small cell lung cancer. Currently there are three studies working toward a continuum of symptom management for patients with NSCLC from stage I to stage IV (see summer 2007 Network for the story of symptom research with early stage lung cancer patients).

A proposed symptom assessment tool for lung cancer

The M. D. Anderson Symptom Inventory for lung cancer patients undergoing radiation (MDASI-Lung) identifies 15 symptoms, caused either by the disease or treatment, and six symptom interferences that possibly affect daily activities as a result.

Symptoms include pain, fatigue, nausea, disturbed sleep, distress, shortness of breath, remembering things, lack of appetite, drowsiness, dry mouth, sadness, vomiting, numbness or tingling, coughing and sore throat.

The six areas in which patients experience interference with how they feel and function include general activity, mood, work (including work around the house), relations with other people, walking and enjoyment of life.

A good starting point: stage II-IIIB

For most patients with locally advanced inoperable NSCLC, standard care consists of concurrent chemoradiation, which has both acute physical and non-specific symptoms that contribute to patients’ general distress.

To better understand this burden, 64 patients being treated in the Department of Radiation Oncology were recruited to a study that used an interactive voice response system and the MDASI-Lung questionnaire.

All patients enrolled in this study received a weekly phone call from the IVRS, a computer-and-telephone-based assessment system, during the 12-week treatment regimen. They were then asked to use their telephone keypads to report the severity and impact of cancer-related symptoms on a 0-10 scale — with 0 meaning not affected, 10 as bad as you can imagine.

This longitudinal study, published in the Journal of Clinical Oncology in September 2006, allowed researchers to document a specific cluster of symptoms that has the strongest impact on this patient population’s daily functioning, yet one whose effects are often ignored in patient care: fatigue, lack of appetite, drowsiness, sleep disturbance, dry mouth and distress.

"This study is very important in helping us educate patients," says Zhongxing Liao, M.D., an associate professor in the Department of Radiation Oncology. "Before a patient starts treatment, we can go over the symptoms and patients appreciate that. They can cope much better if they know what to expect. We used to get complaints, like ‘Nobody told me this was going to happen,’ or ‘I didn’t know this was going to be so bad.’

"This tool helps us explain to patients what’s going to happen at each stage of treatment and the time frame for recovery."

Liao says they also found their assumption that patients would feel better toward the end of treatment as the body started to heal was not true. "We learned that symptoms last two to three weeks after treatment. In fact, they probably get worse during the first and second week after treatment."

Now, before patients go home, she tells them not to reduce their pain medication and not to take out their feeding tubes if their ability to swallow has not totally returned to normal due to the chemoradiation because they need to maintain their hydration and pain control.

"This advice is based on these symptom studies, which will probably help us develop guidelines and treatment of symptoms in the future," she says.

Using the MDASI-Lung, she and her colleagues are preparing to begin two other studies that will help define symptom burden in patients receiving different amounts and types of radiation therapy, such as intensity modulated radiation or proton beam radiation. 

Fatigue as a predictor: advanced lung cancer

One of the most important findings to date was presented at the 2007 meeting of the American Society of Clinical Oncology. In an ongoing longitudinal study of patients with advanced-stage NSCLC, researchers used the IVRS and the MDASI-Lung to collect data from patients who were about to begin chemotherapy. They then followed them up to 18 weeks over the six-cycle treatment regimen.

Advanced practice nurse Kay Herndon (left) works with Charles Lu, M.D., and research nurse Beth Johnson to enroll lung cancer patients in studies using the IVRS and the MDASI-Lung.

What they found is that the level of fatigue patients reported at the beginning of treatment with platinum-based chemotherapy predicted survival. The higher the fatigue, the less the chances they would continue the therapy and the shorter their life span.

"We knew this intuitively," says Charles Lu, M.D., associate professor in the Department of Thoracic/Head and Neck Medical Oncology. "So you might ask, why study this? The difference is that we have been able to measure and quantify something that’s very hard to measure and quantify. And we’re doing it before a patient starts treatment. This data hasn’t existed. No one has treated lung cancer patients with chemotherapy and then contacted them every week to get a thorough inventory of their symptoms. It’s something that takes time and effort."

Lu also has found that when patients discover their commitment in the study is not burdensome — it’s only a phone call and less than five minutes of time — they are quite willing to take part.

As this study moves into its second funding phase, Cleeland’s team also is studying Houston’s large underserved population through the Harris County Hospital District and Lyndon Baines Johnson General Hospital. He and his colleagues are using the MDASI-Lung and the IVRS to see if what they have learned in a predominantly white, non-Hispanic group has relevancy among different ethnicities.

"Our entire department is behind this," Lu concludes. "We feel it’s a very novel and fruitful avenue of research and one sorely lacking until now."


© 2014 The University of Texas MD Anderson Cancer Center