Decision
Aids Give Patients More Say in their Cancer Care
Recently, interactive
programs have become available in print and online to help
patients take a more active role in their health care, from
choosing a treatment plan with their physician, to identifying
late effects and follow-up care after treatment ends.
Tools such as these
are an attempt to address shortfalls of the U.S. health care
system, many of which were outlined in a recent Institute
of Medicine report. By enabling patients to communicate effectively
with their providers about the benefits and risks of cancer
treatment, as well as the possible consequences that should
be monitored, these tools could be a helpful cancer care supplement.
One such tool published
online this past July, called OncoLife, was developed by a
team of oncology nurses and physicians from OncoLink.org,
the Web-based cancer resource of the Abramson Cancer Center
of the University of Pennsylvania. Using a computer, patients
or clinicians can check boxes and select options from drop-down
menus according to type of cancer and treatments received.
The program generates a summary of the possible treatment
side effects - secondary cancers, bone-density loss, infertility,
and cognitive problems, for example - which is called a Survivorship
Care Plan.
"My oncology
nurse actually fills these out for each one of my patients
and we hand it to them as they enter the cancer treatment
process," says Dr. James Metz, editor-in-chief of OncoLink
and assistant professor and chief of clinical operations in
the Department of Radiation Oncology at the University of
Pennsylvania.
OncoLife tracks
information about its users so that the system can evolve
according to their needs, as well as with the latest updates
to treatment information, explains Dr. Metz, who notes that
the first update to OncoLife is expected in the next few months.
"We are seeing
a 'perfect storm' in health care that is going to drive increased
demand for these technologies," says Dr. Brad Hesse,
chief of NCI's Health Communications and Informatics Research
Branch. The advent of widespread electronic health records
and a predicted surge toward direct-to-consumer marketing
of health care are all moving Americans toward a do-it-yourself
attitude, he explains.
Research also supports
the concept of patients becoming more actively involved in
decisions about their cancer care. Several studies with breast
cancer patients, for example, have shown that when a woman
was involved in the decisions surrounding her treatment plan,
she was more likely to be satisfied with the result and with
her life than if she had not been involved in the decision.
This was regardless of the treatment she received or her outcome
in the years that followed.
There are some
concerns, though, with a possible lack of human interaction
when patients begin to rely upon decision tools. The most
recent data from NCI's Health Information National Trends
Survey (HINTS) show an increasing preference for health information
that comes directly from a person, rather than from an inanimate
source such as online or on paper.
"We are living
in a new world where patients and survivors are expected to
take greater responsibility for their health, and we're not
all comfortable with that," says Dr. Julia Rowland of
NCI's Office of Cancer Survivorship. "Some older cancer
survivors, and those from different cultural backgrounds,
for example, are more comfortable with a more paternalistic
model of care; they expect their doctors to be the key decision
makers when it comes to choices in their cancer care,"
she explains.
Low literacy and
low numeracy - that is, what numbers associated with risk,
such as percentages and "chances," really mean -
are other factors that could render otherwise helpful information
useless, or possibly alarming, in unattended hands. For this
reason, the IOM report recommends that health care professionals
review survivorship care plans with patients during a formal
discharge consultation.
Dr. Wendy Nelson,
a program director in NCI's Basic and Biobehavioral Research
Program, notes that NCI is funding several projects to examine
how technology can help patients access and understand health
information. "Decision aids are not a panacea,"
she says. "They have the potential to be useful adjuncts
for patient-physician decision making. However, we still have
a lot to learn about how decision aids work and how they are
being used, even as we develop them."
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