WHITE PLAINS, N.Y., Jan. 31 /PRNewswire/ -- Blood cancer patients need to
ask their doctors about clinical trials because more than half of those seen
by a hematologist or oncologist say their specialist never informed them about
the possibility of participating in a trial, according to a survey released
today by The Leukemia & Lymphoma Society.
The survey, Unequal Access: Understanding Racial, Ethnic, Economic and
Geographic Disparities in the Treatment and Care of Patients with Blood-
Related Cancers, revealed that a majority of specialists are not volunteering
information about clinical trials to their patients.
"This survey is further proof that patients need to be their own advocates
because in many instances their doctors are not telling them about clinical
trials," said Robin Kornhaber, the Society's senior vice president of patient
services.
Kornhaber said the findings were troubling because clinical trials are
such a crucial step in the development of new treatments and are often the
only remaining hope for patients.
"For many cancer patients, clinical trials present an opportunity to take
advantage of promising new treatments not yet available and may offer new hope
for patients when the standard treatments are not effective," Kornhaber said.
She added that most types of leukemia, lymphoma and myeloma are not
curable, yet many promising therapies are being tested in clinical trials to
assess if they will delay the progression of disease and/or reduce side
effects compared to standard therapies.
Kornhaber said there are a number of barriers that may lead doctors to
avoid a discussion about trials. The primary factor is economic, she said.
Kornhaber said questions about insurance reimbursement and uncertainty about
the risks make some patients hesitant to participate in trials. But she said
one of the main reasons doctors don't discuss them in the first place is worry
about the potential financial impact on their own practice.
"They fear they might lose their patients to the institution conducting
the trial, even though this may not actually be the case," she said.
"Oncologists might also avoid participating in clinical trials due to added
administrative burdens and costs to their practice, factors that frequently
prevent physicians from being able to conduct clinical trials in the community
centers where they practice."
John Leonard, M.D., clinical director, Center for Lymphoma and Myeloma,
Weill Medical College of Cornell University and New York Presbyterian
Hospital, agreed that inadequate participation in clinical trials is a major
problem.
"Hematologists and oncologists may be unable or reluctant to dedicate the
time and resources required to be part of a clinical trial, in part due to the
extra effort required to provide explanation and to follow the necessary
guidelines," said Dr. Leonard. "Participating in a clinical trial can require
more detailed monitoring than a patient would generally receive under standard
care, though this can often benefit the patient. Also, community doctors may
be less specialized, caring for patients with many different tumor types
rather than focusing in a specific area, making involvement in a disease-
specific clinical trial less practical."
Jorge Cortes, M.D., Department of Hematology, The University of Texas M.D.
Anderson Cancer Center, Houston, agreed.
"Community doctors may be uncertain about the objectives of the trial in
question or may simply lack the awareness of the opportunities and
requirements to participate," he said. "When unable to offer clinical trials
directly through their practice, some oncologists may not recognize the
participation in clinical trials as a partnership between them and the
academic healthcare team working for the good of the patients. In reality, a
successful clinical trial requires both a good community doctor and a good
academic healthcare group if it is really going to help patients."
The survey indicated that doctors were less likely to direct older cancer
patients to clinical trials even though blood cancer is most common in that
population and many clinical trials are designed to address the special
challenges of treating older patients. Of survey respondents over the age of
75, 74 percent said their specialist did not speak to them about participating
in clinical trials.
Women, too, were underrepresented. More than 60 percent of female patients
said they did not have a conversation with a specialist about participating in
a trial, while just under 50 percent of men said they did not have such a
conversation. Of those respondents who said they were not informed about
clinical trials, 25 percent said they would have wanted the information.
Dr. Leonard also pointed out that the survey's findings are particularly
striking when examined in contrast to the successful development of pediatric
cancer therapies that are a direct result of large-scale participation of
children in clinical trials.
"Forty years ago, the survival rate for children with acute lymphocytic
leukemia was only 14 percent," he said. "Today, thanks to successful
treatments that would not have been possible without clinical trials, more
than 85 percent of children survive this form of leukemia," Dr. Leonard said.
To educate patients and their caregivers about the importance of clinical
trials, the Society is unveiling an education program, Paving the Way for
Progress: Clinical Trials in Blood Cancer. Each of the Society's 64 chapters
in the United States will offer the program, which features local experts
discussing how clinical trials work, why they are important and the measures
taken to protect patients. The program is being tested in seven chapters this
winter with plans for a national-rollout this summer.
Brookdale Center on Aging of Hunter College and Bellevue-Hunter School of
Nursing, City University of New York conducted the survey for Society this
fall. The Society commissioned the study to determine how to improve access
and quality of health services for blood cancer patients from underserved
segments of the population, including older patients and women.
To receive a copy of the survey or to arrange interviews with Robin
Kornhaber and Drs. Cortes and Leonard, please contact Andrea Greif at
(914) 821-8958.
SOURCE The Leukemia & Lymphoma Society
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Related links:
http://www.LLS.org
CONTACT:
Andrea Greif for The Leukemia & Lymphoma
Society, +1-914-821-8958
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