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Measuring the Immeasurable

Conquest - Fall 2007

By Sandi Stromberg

Editor’s note: Studying symptom-related data to improve survivors’ daily lives is the central focus of M. D. Anderson’s Department of Symptom Research. This is the second in a series of articles that details the steps being taken to collect solid, scientific evidence that can be used to design interventions to relieve the symptom burden caused by cancer and its treatments.

Cancer patients enter treatment with endless questions. The first one is typically, “Will the treatment be successful?” But quickly on its heels is another, “What will the side effects be?”

Given the challenges oncologists face working towards answering the first question, it’s understandable that the second one has received little attention until now. What has been lacking are tools to help health care providers understand and measure the symptom burden patients experience during and after treatment.

Charles Cleeland, Ph.D., chair of M. D. Anderson’s Department of Symptom Research, and his team are working to address that need. While it’s a long journey from scientifically identifying symptom distress to discovering the biologic mechanisms that cause these symptoms and creating interventions, they’re taking the first steps.

Using a computer- and telephone-based assessment system, lung cancer patients can use a telephone’s keypad to report post-surgical side effects, rating the severity of symptoms on a scale from 0-10.

One of several collaborations they’ve 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 non-small cell lung cancer from stage I to stage IV.

Technology answers the call: early stage disease

Ara Vaporciyan, M.D., associate professor in the Department of Thoracic and Cardiovascular Surgery, helps his patients understand the side effects of their surgery. But much of what he’s been able to tell them until now was anecdotal, not evidence-based. The ongoing challenge he and his colleagues face is gathering symptom-related data in real time.

Now, working with Xin Shelley Wang, M.D., associate professor in the Department of Symptom Research, he and fellow surgeon Assistant Professor Wayne Hofstetter, M.D., are testing the effectiveness of an interactive voice response system on postoperative symptom control. Wang is the study’s principal investigator.

The IVRS is a computer- and telephone-based assessment system that allows patients to report distress, sleep disturbance, shortness of breath, constipation and pain — side effects for which they can offer interventions.

All patients enrolled in this ongoing randomized study receive a weekly phone call from the IVRS. In turn, they use their telephone keypads to rate on a 0-10 scale — with 0 meaning not affected, 10 as bad as you can imagine — and record symptoms as they occur.

If any of the targeted symptoms exceeds the threshold value chosen by the investigators, one of two things happens:

  • For the control group, the information is recorded and archived for study at a later date.
  • For members of the study group, information about symptoms is forwarded to the health care team to review and potentially act upon.

Clinical interventions are handled by Sherry Wright and Madonna Berry, advanced practice nurses in the Department of Thoracic and Cardiovascular Surgery. They are working with Beth Johnson, a research nurse supervisor in the Department of Symptom Control.

“This study provides us with data that allows me to have a greater understanding of what my patients go through so I can better prepare future patients for surgery. It also allows us to determine if the IVRS could be helpful in symptom management during this acute postoperative phase,” Vaporciyan says. “We’ve learned that pain is highest after surgery and then decreases. But after a month, it increases again, only to drift back to baseline after four to five months.

“Simply knowing that the pain will most likely increase and conveying this to the patient helps us alert them to move a little slower and to avoid unnecessary pain.”

A good starting point: stage II-IIIB

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

Radiation oncologist Zhongxing Liao, M.D., uses the MDASI-Lung questionnaire to better understand the symptoms lung cancer patients experience and to help them know what to expect during and after treatment.

To better understand this burden, 64 patients being treated in the Department of Radiation Oncology were recruited to a study that used the IVRS and the M. D. Anderson Symptom Inventory, MDASI-Lung questionnaire. Each patient was contacted weekly during the 12-week treatment regimen and asked to report the severity and impact of cancer-related symptoms.

This longitudinal study, published in the Journal of Clinical Oncology in September 2006, also allowed researchers to document a symptom cluster 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., associate professor in the Department of Radiation Oncology. “Before a patient starts treatment, we can go over symptoms associated with the treatment. Patients appreciate that. 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 completion of chemoradiation.”

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 non-small cell lung cancer, researchers used the IVRS and the MDASI-Lung questionnaire to collect data from patients who were about to begin chemotherapy. They then followed them for 18 weeks over the six-cycle treatment regimen.

What they found was that the level of fatigue patients reported at the beginning of treatment with platinum-based chemotherapy predicted survival. The higher the fatigue, the less chance 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’ve 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.”

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 an interactive voice response system and a lung symptom questionnaire.

Lu also has found that when patients discover their commitment in the study is not burdensome, it’s only a phone call and takes less than five minutes, they’re quite willing to participate.

As this study moves into its second funding phase, Cleeland also is involved with 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 questionnaire and the IVRS to see if what they’ve 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.”

In the spring issue, the series continues with a look at the symptom burden of patients with head and neck cancers.

Conquest - Fall 2007

BATTLE-ing Lung Cancer

Hope is on the Horizon
View video: Anas Younes, M.D., talks about clinical trials available for Hodgkin’s lymphoma at MD Anderson
Surgery Spares Fertility
Finding Answers in the Lost Pines

Janet M. Bruner, M.D.

Symptom Research
Measuring the Immeasurable

Moving Forward
Robert Dorsey Jr.

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© 2015 The University of Texas MD Anderson Cancer Center