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Educational Supplement: Appendix
Side
Effects, Quality-of-Life Issues, and Tradeoffs
in Adjuvant Therapy for Breast Cancer:
The Patient Perspective
Amy
S. Langer, M.B.A.
In the past
decade, increasing utilization of screening mammography and clinical
breast examinations has resulted in a stage shift to earlier disease
presentationunfortunately, primarily among insured and higher-income
women. This positive public health trend, together with recent significant
advances in the variety and effectiveness of systemic therapy options,
has produced more favorable outcomes from adjuvant treatment for
many patient groups. However, when they have had a recent diagnosis
of invasive breast cancer and are still in the initial phase of
shock and dismay, most women are unprepared to make the often complex
tradeoffs and challenging decisions about adjuvant treatment that
rapidly follow initial diagnosis.
Women with early-stage
breast cancer are a highly heterogeneous population. They differ
not only by disease and demographic characteristics, such as age,
culture, language, income, insurance, and employment status, but
also by personal responses and circumstances, including partner/family
status and available emotional and social support; personal attitudes
and values about their breasts, cancer, and disease; the ability
to make decisions based on quantitative factors and abstraction;
and how they define survival with an acceptable or good
quality of life. Women also have markedly different physical and
emotional responses to therapy, both in the manner and degree in
which they experience side effects and their sensitivities to any
particular side effect, so that an effect of passing annoyance to
one woman may be virtually disabling to another.
Science is currently
lacking adequate and effective predictive and prognostic factors
tools to accurately project (and monitor, on the micro level) disease
response to any one treatment in an individual patient, and to predict
her sensitivity to its side effects. Adjuvant therapy for breast
cancer has been prescribed based on patient populationsa macro
approach that overtreats some women who might be cured with less,
different, or no therapy, and undertreats others whose disease recurs,
with the population of each group only apparent in retrospect. This
is only just beginning to change. Significant improvements are yet
to be made in individualizing therapy for each woman so that her
treatment is most likely to produce maximal disease response and
minimal side effects.
Improvements
are also needed in methods of educating and communicating about
treatment options. Ultimately, improved knowledge about these important
aspects will assist women and health care professionals in the shared
task of selecting (or rejecting) approaches to adjuvant treatment,
taking into account the individual patients personality, preferences,
and priorities, and her attitudes about tradeoffs, side effects,
and quality of life.
Adding to these
limitations are pressures in the clinic that result in reduced time
spent discussing treatment approaches (and clinical trial options)
with patients. Oncology professionals are facing economic stressors,
a growing patient volume, and additional clinical administrative
requirements. While nurses and other healthcare professionals must
juggle increased patient volume and additional tasks, the historic
job of offering emotional support and practical suggestions, patient
education, and information exchange is receiving lower priority.
With the growth of the World Wide Web and as cancer and breast cancer
Web sites, chatrooms, and other electronic resources multiply, and
in the era of direct-to-patient advertisements for oncology products
in lay publications and on television, patients have more and varied
opportunities to receive information, misinformation, anecdote,
and opinion about breast cancer and its treatment.
Patient and
lay access to information resources also now includes the same clinical
trial directories, medical journal articles, and professional medical
meeting real-time reports and abstracts that were until recently
the exclusive territory of trained oncology professionals. However,
patients and their families need and want authority and guidance
about how to use breast cancer education and information safely
and well. Consumers require expert assistance to separate fact from
myth, chat, and personal stories, and to help them digest and assess
the quality and relevance of the huge, often overwhelming volume
of medical and treatment information suddenly so available both
off- and online.
Meanwhile, many
groups of breast cancer patientsthose whose native language
is not English, and members of lower-income and lower-literacy populationsare
being marginalized by an electronic information explosion that so
far is of limited value to them, and to which they have limited
access. Although government and private support is growing for early
breast cancer detection programs among low-income women and special
populations, this same cultural competence has not yet widely extended
past screening into diagnosis and treatment programs. As a result,
when they have the good fortune to experience early diagnosis, studies
have shown that state-of-the-art adjuvant treatments for breast
cancer are neither offered to, nor chosen by, medically underserved
women sufficiently often.
Finally, in
an effort to gather insight to assist the patient and her physician
in making the best adjuvant therapy decisions for breast cancer
in the current clinical era, we should examine the current relevance,
value, and utility of the traditionally underfunded, underattended-to
studies that exist on the topic of patient decision-making, risk
assessment, and choice. The little data there is about individual
patient factors and decision-making as it affects adjuvant therapy
decisions were collected in a very different erawhen many
of the improved options for adjuvant treatment and side effects
management did not exist, when patients were less informed and participatory,
and when there were fewer breast cancer information resources and
support and acquisition styles. Quality of life factors and patient
decision-making measurements have traditionally been reduced to
dry mathematical formulas rather than patient-centered interactive
measurements that use tools such as controlled self-assessments
over time. With additional funding and advocacy/patient/academic
collaboration, this is an area that may require entirely new research
approaches.
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