Association of Directors of
Anatomic and Surgical Pathology
The FAQ Initiative Explaining Pathology Reports to Patients
Concern has been expressed by
pathologists about the lack of visibility of our profession and our role as
clinicians by both the general public and the medical community despite the fact
that our contribution to the care of patients with cancer and other diseases has
never been greater. In an attempt to reach the goal of enhanced visibility, an
international group of patient-centric pathologists organized by Juan Rosai met
in Sirmione, Italy on May 2-4, 2008. One
outcome of this meeting concerned the recognition that patients
are becoming more active participants in their health care. Not only are they
using the internet to research their disease and find specific pathologists to
offer second opinion reviews, but increasingly patients are also reading their
pathology reports.
No matter the clarity of the report,
patients are often confused by the medical terminology they encounter in
their reports.
For example, in a prostate biopsy report with
favorable grade adenocarcinoma on one core and high grade prostatic
intraepithelial neoplasia (PIN) on another core, I am aware of cases where
patients have may focused on and worried about
high grade PIN since they read that
high grade tumors are bad.
Pathologists are the best physician group to help patients better
understand their reports, as many clinicians, themselves, don’t fully understand
pathology reports.
Furthermore, based on my daily experience of discussing pathology reports with
patients, clinicians are busy and often don’t take the time to fully explain the
report to the patient. Even if
clinicians address some of the issues at the time of telling the patient about
their cancer diagnosis, patients may be “shell-shocked” and not fully integrate
what they have been told. Being able to carefully review their report at home
allows them to better digest the information and more meaningfully discuss the
findings with their treating physicians.
While there are several excellent
websites devoted to cancer in general as well as organ-specific cancer sites,
these sites are insufficient in and of themselves. None of the sites are aimed
at deciphering biopsy pathology reports on specific cancers, but rather provide
information in general about various cancers.
To address these issues, a series of
“Frequently Asked Questions and Answers (FAQs)” were developed for the most
common cancer biopsy reports, modeled after FAQs that the lay public is familiar
with at the end of most technical instructional manuals. All the FAQs begin with
the introductory statement: “When your (prostate, colon, esophagus, etc) was biopsied,
the samples taken were studied under the microscope by a specialized doctor with
many years of training called a pathologist. The pathology report tells your
treating doctor the diagnosis in each of the samples to help manage your care.
This FAQ sheet is designed to help you understand the medical language
used in the pathology report.”
It was decided
that the FAQs would first be developed for biopsies as opposed to resections, as
therapeutic decisions are typically driven by the biopsy report. Initially, it
was also believed that it was best to concentrate on the more common cancers
along with certain common biopsies performed to rule out neoplastic changes.
With these guidelines in mind, FAQs were developed for the prostate, colon,
esophagus, breast, and lung. There are only a limited number of FAQ sheets for
each organ (Table 1). The authors for the specific FAQs are listed in Table 2.
The concept is that at the end of signing out a biopsy involving any one of
these organs, a reference to the website can be cited. The website will direct
the patients to the appropriate organ and then the specific diagnosis within an
organ.
All FAQs have
been reviewed by a small group of lay people to insure that they would be
understood by the typical patient requesting his or her pathology report. As a
patient requesting a pathology report will not be the “average” patient in terms
of their education and medical sophistication, the FAQs are at a somewhat more
advanced level than if they were targeted for the general populace. The
site-specific FAQs have also been reviewed by respective subspecialty physicians
to insure that they do not infringe on the treating physician patient
relationship.
The FAQs can
be read in their entirety on the on-line version of the Journal.
As an example of this process, the “questions” for the FAQ for a biopsy
report containing prostate cancer is listed in Table 3 with several “answers”
listed below to illustrate the thought process that went into their development.
The answer to
question #1 is: Adenocarcinoma of the
prostate is a type of cancer (tumor) with a wide range of behavior from cases
which are very slow growing with a low risk of causing men harm to cases which
are more aggressive. For the purposes of understanding their biopsy report,
a broad definition is all that is necessary. If more in depth understanding of
prostate cancer is desired, then other sources can be used.
The answer to
question #5: The lowest Gleason score
(least aggressive) tumor that is typically present on prostate biopsy is a 6
with higher grades (maximum Gleason score 10) corresponding to progressively
more aggressive tumors. Patients are
often worried when told that they have Gleason score 6 cancer as it is in the
middle of the Gleason score range (2-10). This FAQ tells them that if they have
a Gleason score 6 cancer, it is as good a grade as can be expected. Answers in
some cases are purposefully left general so as to not infringe on the treating
physician-patient relationship. It is not the role of the FAQ, for example, to
tell the patient with a Gleason score 10 tumor that they have a low likelihood
of surviving.
The answer to
question #9 is: These are special tests
that the pathologist sometimes uses to help make the diagnosis of prostate
cancer. Not all cases need these tests. Whether your report does or does not
mention these tests has no bearing on the accuracy of your diagnosis. The
specifics of what the various antibodies label is not important to the patient.
Patients also need to know the lack of significance if their report does
not mention these tests.
The answer to
question 13 is: All of these terms are
things that the pathologist sees under the microscope that in some cases can
look like cancer but are of no importance when seen on the biopsy and has
nothing to do with cancer. Pathologist often list in the report
morphological findings that are of no prognostic significance and of no
relevance for the patient. Synonyms are also used in the questions to account
for virtually any term that a pathologist may use in their report so that the
FAQs need not be individualized for specific pathologists.
The end of the
answer to question #10 states: In some
cases, it may affect treatment and in other cases it has no significance. How
this finding will affect your specific treatment is best discussed with your
treating doctor. Whenever there are FAQs concerning therapy this statement
is added.
As the vast majority of the FAQs deal with questions and
answers that will not change over time either because they are definitional (ie.
question #1) or general in their nature (ie question #5), there will be
relatively few FAQs that will need periodic updating. Nonetheless, it will be
the role of the ADASP and the subcommittees for the organ-specific FAQs to
periodically review them to update their content. Working with international
pathology societies, The FAQs will also be translated into several different
languages and modified if necessary for the different countries.
In
addition to a website containing the FAQs, they will be widely published on
various pathology, clinical, and patient websites.
The FAQ initiative not only helps improve patient care as
patients become more active participants in their own health care, but is
critical for pathologists to maintain and reinforce our important role in
patient care. Increasingly, as many
pathologists move from traditional hospital settings to laboratories, there is a
risk that we will be perceived by the public and other physicians as laboratory
scientists rather than as an integral component to the team involved in the
diagnosis and treatment of patients. It is crucial that we as a discipline
develop FAQs to explain our pathology reports.
If we do not do this, other groups with less expertise, such as patient
support groups or cancer societies, will eventually usurp this process from us.
Jonathan Epstein, MD
The Johns Hopkins Medical Institutions, Baltimore MD
Director of the FAQ Initiative
Sponsored
by the Association of Directors of Anatomic and Surgical Pathology (ADASP)
Endorsed by
the College of American Pathologists (CAP)
Conceptualized by The Sirmione Group:
Juan Rosai MD (Chair), Consulenze
Patologiche Oncologiche, Centro Diagnostico Italiano (CDI), Italy;
Manfred Dietel MD, Institute of Pathology Charité, Humboldt University of
Medicine, Germany; Jonathan I. Epstein MD, The Johns Hopkins Medical
Institutions, USA; Robert J. Kurman MD, The Johns Hopkins Medical Institutions,
USA; Elizabeth Montgomery MD, The Johns Hopkins Medical Institutions, USA;
Manuel Sobrinho-Simões MD,
Medical Faculty, University of Porto, Portugal; Ronald S. Weinstein MD,