The FAQ initiative explaining pathology reports to patients

Abstract

To the Editor: 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 2–4 May 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 as they read that highgrade tumors are bad. Pathologists are the best physician group to help patients better understand their reports, as many clinicians, themselves, do not fully understand pathology reports. Furthermore, based on my daily experience of discussing pathology reports with patients, clinicians are busy and often do not 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. Although there are several excellent websites devoted to cancer in general, as well as to organspecific 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.

DOI: 10.1038/modpathol.2010.108

Cite this paper

@article{Epstein2010TheFI, title={The FAQ initiative explaining pathology reports to patients}, author={Jonathan I. Epstein}, journal={Modern Pathology}, year={2010}, volume={23}, pages={1298-1300} }