FORT LAUDERDALE, FLIn a first-of-its kind, the American
Cancer Society (ACS) and the National Comprehensive Cancer Network
(NCCN) have collaborated to produce Breast
Cancer Treatment Guidelines for Patients, a detailed
translation for the public of NCCNs breast cancer practice
guidelines. The NCCN is a coalition of 17 leading US cancer centers. Its practice guidelines have won acceptance among many
oncologists as the gold standard of treatment.
The new publication, released at NCCNs fourth annual practice
guidelines conference, is the first in a set of guidelines for
patients. The next patient guideline will deal with prostate cancer.
Within a year, the series will number 10 publications that will cover
the 10 most common cancer sites. These guidelines will be updated
each time NCCN updates one of its corresponding practice guidelines.
A Guide to Getting the Breast Cancer Guide
Health care professionals and the public can obtain copies of the
NCCN also provides information on its 17 member institutions,
The guidelines are also featured in the debut issue of InTouch,
PRR, Inc., the publisher of Oncology News International, aided the
Officials of the two organizations express confidence that the joint
effort will increase patient knowledge, clarify decision-making
issues, ease problems in physician-patient communication, improve
compliance, and educate patients about the importance of clinical
trials and increase the number willing to participate in them. Some
envision physicians and patients sitting down with their respective
guides in hand when they talk.
Ted Gansler, MD, ACS director of health content, who led the
translation effort, said that this is an important direction in
meeting an unmet need for cancer patients. Our goal, obviously, is
not do-it-yourself oncology, but rather the empowerment of patients
to make informed decisions about their treatment and to know what
questions to ask their health care providers.
Rodger J. Winn, MD, director of community oncology at M.D. Anderson
Cancer Center and chairman of the NCCN guidelines steering committee,
said in an interview that one of our goals is to have an impact
on the quality of patient care. Remember, guidelines are tools to
assist. By putting the patient and provider on the same page, you
hope they will begin to focus on the same issues.
The guidelines project emerged as the result of two organizations
converging from different directions. For 4 years, NCCN has focused
on preparing oncology practice guidelines. Three years ago, an ACS
Blue Ribbon committee recommended that the ACS provide lay versions
of practice guidelines to the public. After attending several NCCN
guideline conferences, LaMar S. McGinnis, MD, a past ACS president
and now an ACS medical consultant, recommended that the two groups
I was impressed with the quality of the guidelines and even
more with the mechanism NCCN had established for their
development, Dr. McGinnis said. Expert panels develop the
guidelines from evidence-based data. When data are not available, the
expert consensus prevails, and when a consensus isnt reached,
the best information prevails. For each provision in the guidelines,
the NCCN gives the level of acceptability (as Category 1, 2, or 3),
indicating whether there was total agreement, general agreement, or disagreement.
The ACS desire to use translated practice guidelines to help cancer
patients fit well with NCCNs own desires, said William T.
McGivney, PhD, NCCNs chief executive officer. We were
focused initially on the professional guideline process, but clearly
we knew at some point that we would begin the translation of these
guidelines to patient information, he said. We want to
enhance patients understanding of appropriate treatment and
improve informed decision-making.
Attitudes have changed dramatically regarding cancer over the last
two decades. Fatalism has given way to an acceptance by most
Americans that cancer is a treatable disease, and some take an
aggressive approach to learning about their illness and participating
in their therapy decisions. Many cancer patients today are voracious
information seekers who surf the Internet and search out publications
and advice, acquiring enormous amounts of material from diverse sources.
The problem this poses for any patient is perspective,
Dr. Winn said. How do they weigh what is given as an
alternative? How do they know it applies to them? Very often patients
come in actually befuddled. They have reams of information, but they
dont know how it applies to their situation. Pure information
doesnt help. It has to be structured information. Hopefully, we
will be able to put the information into a structure that enables
patients to grasp it and understand how it applies to them.
ACS took on the task and cost of translating the NCCN practice
guidelines, beginning with breast cancer. The guidelines are written
at a high school graduate reading level, which allows a detailed,
relatively sophisticated description of breast cancer; its various
types, stages, and tests; and the treatments available for each stage
of the disease.
The breast cancer guidelines are very specific in explaining
why different tests have an impact on a womans treatment
choices and in giving insight into why a physician is recommending
one treatment over another, said Dia Caron, NCCNs patient
A key to making the patient program effective is keeping the
guidelines current. NCCN updates its practice guidelines for
physicians at least once a year. ACS plans to update the patient
guidelinesand do so quicklywhenever NCCN changes the
practice guidelines on which they are based.
To ensure accuracy, the guidelines for breast cancer patients were
reviewed by staff at ACS and NCCN, and by other experts, including
Dr. Winn, oncologist Robert W. Carlson, MD, of Stanford University,
who chairs the NCCN breast cancer guidelines panel, and breast cancer
survivor Mary Lou Smith, a Chicago-based health care consultant who
has served on two NCCN practice guidelines panels and is a past
president of Y-ME National Breast Cancer Organization.
The translation to the patient guidelines had to be totally
consistent with the directives and recommendations that the expert
panel on breast cancer put together for the professional
guidelines, Dr. McGivney said. He and others foresee the
guidelines as being beneficial to patients and oncology teams alike.
NCCN Member Institutions
Arthur G. James Cancer Hospital
City of Hope National Medical Center
Dana-Farber Cancer Institute
Fox Chase Cancer Center
Fred Hutchinson Cancer Research Center
H. Lee Moffitt Cancer Center & Research Institute at the
Huntsman Cancer Institute at the University of Utah
Johns Hopkins Oncology Center
Memorial Sloan-Kettering Cancer Center
Robert H. Lurie Comprehensive Cancer Center of Northwestern University
Roswell Park Cancer Institute
St. Jude Childrens Research Hospital
The University of Texas M.D. Anderson Cancer Center
UCSF Stanford Health Care
University of Alabama at Birmingham Comprehensive Cancer Center
University of Michigan Comprehensive Cancer Center
UNMC/Eppley Cancer Center at the University of Nebraska Medical Center
These patient guidelines are very important, Ms. Smith
said. Information helps empower patients to make decisions that
are in their best interests. Patients are somewhat at a disadvantage
if they dont understand some of the basic reasons as to why a
physician is proposing a certain treatment. It is critical to have
reliable information for patients that is consistent and
individualized. For physicians, I see the guidelines as a way to
reinforce information already given to a patient. I can see a
physician annotating them for the patient.
Patient care is a partnership and one that works best when
everyonepatient, family, and the oncology teamhas a sense
of what the opportunities and treatment options are, Dr. Carlson
said. With the new guidelines, he said, patients better
understand their disease and their treatment options, and this makes
the interactions more efficient. The educated patient is always
easier to treat.
For the oncology team, patient guidelines can save time.
Thats an enormous advantage, Dr. McGinnis said.
Its a heavy time user to get into indepth discussions. If
a physician or nurse oncologist can open the dialog, direct the
patient to the guidelines, and have them come back and ask the proper
questions, it can save a lot of time.
One expectation for the guidelines is that through the process of
involving and educating patients, compliance will improve.
Informed individuals who believe they are part of this
decision-making process are going to be more compliant with treatment
because they have bought into it; its their decision as well as
the physicians, Ms. Smith said.
Likewise, the hope hovers that the guidelines will enlighten patients
about clinical trials, and more of them will want to participate. The
guidelines, for example, describe the kinds of questions researchers
seek to answer in trials; what takes place in phase I, II, III
trials; and why it is important to volunteer.
As patients read the guidelines, they are going to be amazed at
how much we know and that so much of what we know has been learned
from clinical trials, Dr. Carlson said. We hope patients
will realize that trial participation does not make them a guinea pig
or a second-class citizen; it is quite the opposite.