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American Cancer Society Lymphedema Workshop
Supplement to Cancer
Workgroup IV
Lymphedema Treatment Resources—Professional Education and Availability of
Patient Services
Darlene R. Walley, Ph.D. (Co-Chair)
Elizabeth Augustine, M.S., P.T. (Co-Chair)
Debbie Saslow, Ph.D. (Rapporteur)
Sherry Bailey*
Eunice Jeffs, R.N.*
Bonnie Lasinski, M.A., P.T.*
JoAnn Plotkin*
Maye Walker*
Although estimates vary on both the incidence and prevalence of
lymphedema related to breast carcinoma treatment, even at the lowest estimate it is a serious public health problem. Lymphedema is a
barrier to recovery and rehabilitation from breast carcinoma treatment for a significant number of women today, and will be for a
significant number of women who will develop this disease. A common theme heard at the Public Forum that preceded the American
Cancer Society Lymphedema Workshop was that health care providers are poorly informed about this disease and therefore commonly
do not recognize early symptoms. Providers are also poorly informed
about the range of treatment options, which treatment may be most
appropriate for the patient, and the availability of treatment in their
community. Even if a patient’s physician is responsive to signs and
symptoms, often they face the vexing challenge of identifying appropriate resources in the community. This workgroup concluded that
there was a critical need to provide guidance about lymphedema to
health care providers, insurers, and breast carcinoma survivors, especially regarding its early signs and symptoms. There is also a critical
need to increase the availability of treatment resources.
A. Currently, little emphasis is placed on awareness, recognition, or
treatment of lymphedema among physicians (gatekeepers), allied health
professionals, and insurers.
Workgroup participant.
Presented at the American Cancer Society
Lymphedema Workshop, New York, New York,
February 20 –22, 1998.
Address for reprints: Robert A. Smith, Ph.D., American Cancer Society, Inc., 1599 Clifton Rd. NE,
Atlanta, GA 30329.
Received October 26, 1998; accepted October 28,
© 1998 American Cancer Society
The American Cancer Society and other appropriate organizations
should write an impact statement to disseminate to health care professional organizations, requesting that they each develop clinical
practice guidelines that focus on education and recognition of
lymphedema that occurs after breast carcinoma treatment. The
guidelines will need to cover different treatment needs as well as
recognition of lymphedema as a disease (rather than a condition or
B. Lymphedema is not a priority within the curricula of medical
Lymphedema case studies should be included in grand rounds, continuing medical education courses, and graduate medical education.
Research is needed to determine the best format and content for how
to educate health professionals. Cancer-related lymphedema should
be incorporated into differential edema diagnosis, e.g., cardiac, ve-
Workgroup IV/Walley et al.
nous, etc. The different educational needs of physicians and physical therapists must be addressed.
C. There is insufficient access to good educational
materials and textbooks published in English.
Suppliers and authors of medical texts published in
English should be contacted about the need for professional education about lymphedema. In addition,
efforts should focus on the inclusion of these materials
in graduate medical education and their availability in
D. There are no guidelines or certification to assure that
specific treatments or treatment facilities meet state-ofthe-art criteria. It is unclear which body should be
responsible for certification.
A multidisciplinary task force should be assembled to
establish certification guidelines and determine how
they should be implemented and enforced in a way
that conforms to a current American system, e.g.,
JCHO. In the short term, the basic questions patients
could ask to compare the qualifications of alternative
treatments or treatment settings should be made
more widely available.
E. Patients and their physicians generally do not know
where to obtain treatment or how to assess the quality
of available treatment resources. At this time, the
number of treatment centers is inadequate, and the
availability of treatment is limited by geography.
The American Cancer Society and other appropriate
organizations should issue and widely disseminate a
complete lymphedema resource guide. The proliferation of treatment centers based on involvement of an
accreditation group and consensus diagnosis/management guidelines should be encouraged. Independent breast carcinoma care and women’s health care
centers should be certified for lymphedema treatment
to ensure that patients have access to comprehensive
F. There is a need for management strategies, based on
severity and cost-effectiveness, for patients who present
with signs or symptoms of lymphedema.
All health care providers should be fully informed of
the risk of lymphedema, basic preventive measures,
and signs and symptoms of lymphedema, including
subjective perceptions consistent with this disease.
Patients presenting with mild lymphedema should be
referred to health care professionals who have been
trained to administer treatment (e.g., physical therapists), whereas the most severe cases of lymphedema
should be referred to health care professionals who
have received postprofessional specialized training in
lymphedema management (e.g., physical therapists,
occupational therapists, nurses, and physicians).
A. Currently, the workshop is unaware of cost/economic
analyses of the burden of lymphedema. The absence of
these data may contribute to the low priority that
lymphedema is given by insurers.
There is a need for investigations and analyses to
quantify the costs of treating lymphedema patients.
The workshop believes that these costs will likely be
substantial and may prove persuasive to policymakers.
A. There is no consistent guideline regarding when to
interact with patients, including prior to or subsequent
to breast carcinoma treatment. The workshop affirmed
the importance of patient education regarding the risk of
lymphedema, post– breast carcinoma treatment
behaviors associated with risk and risk reduction, and
recognition of early signs and symptoms.
All patients should be provided with information
about lymphedema prior to and after breast carcinoma surgery, including reconstruction. Psychosocial
research related to communication of posttreatment
risk and living with posttreatment risk is needed, as
are data on the incidence of lymphedema following
different treatment regimens.
B. Currently, there are no standard intervention
strategies for patients with lymphedema and no common
goal for treatment outcome, i.e., reduction of symptoms,
quality of life, etc. This absence of objective criteria and
shared outcome goals is believed to be a factor in poor
compliance with treatment regimens and lack of
understanding by patients.
The American Cancer Society and other appropriate
organizations need to develop an overall intervention
strategy, including the involvement of patient support
systems. Research is needed that compares costs, efficacy, compliance, and quality of life associated with
different intervention strategies.
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