Measuring the immeasurable
Symptom distress and lung cancer
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
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
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.
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.
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 nonsmall cell lung cancer. Currently there are three studies
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For most patients with locally advanced inoperable
NSCLC, standard care consists of concurrent
chemoradiation, which has both acute physical and nonspecific 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 telephonebased assessment
system, during the
12-week treatment
regimen. They were
then asked to use their
telephone keypads
to report the severity
and impact of cancerrelated 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
Survivorship
Issues
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.
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
Advanced practice nurse Kay Herndon (left) works with
chances they would Charles Lu, M.D., and research nurse Beth Johnson to
continue the therapy enroll lung cancer patients in studies using the IVRS and
and the shorter their the MDASI-Lung.
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 MDASILung 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.”
This is the third in a series of articles focusing on the steps being taken to gather symptom-related data to
improve survivors’ daily lives. You can view these online at www.mdanderson.org/publications/network or
receive a copy by calling 713-792-3457.
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