Urologic Oncology: Seminars and Original Investigations
Original articleReadability of urologic pathology reports: The need for patient-centered approaches☆
Introduction
In 2003, the National Assessment of Adult Literacy found that approximately 30 million adults were functionally illiterate, and 36% of adults had basic or below basic health literacy [1]. Individuals of lower socioeconomic status, the elderly, and the racial minorities are more likely to have low health literacy [1]. Considering the state of health illiteracy in the United States, it is likely that cancer-related educational material is above the level of comprehension for most patients. In one review of available resources on the Internet, the average reading level of material on more than 100 websites was ninth grade or higher, and many English-language sites typically require at least a high school graduate reading ability [2]. Websites for common cancers, including prostate cancer, typically require a college-level reading ability [3]. Quality-of-life questionnaires and patient information booklets have yielded similar findings [4]. As a result, many patients and their families have difficulty finding reliable and comprehensible information regarding their cancer diagnosis.
For those affected by cancer, the pathology report can inform a patient׳s diagnosis, treatment options, and prognosis. However, pathology reports are written with complex medical vocabulary. Furthermore, these reports do not intend the patient to be a target audience [5]. Patients often seek information to better understand their cancer diagnosis, and with the increasing use of computerized medical records, patient access to their medical records, including pathology reports, is commonplace [6]. Yet, medical vocabulary used in pathology may make it impossible for the patient to understand the report [7]. Clear communication of the information in a pathology report is important for patient-centered care. Patient-centered communication has been associated with positive health outcomes including improved patient satisfaction, improved psychological health, and greater comprehension [8], and is a research priority of the National Cancer Institute (NCI) [9].
To address this deficiency in patient-centered outcomes research, we tested the readability of pathology reports for the most common urologic cancers: prostate cancer, kidney cancer, bladder cancer, and testicular cancer. These cancers are among the most prevalent in the United States, and for each cancer, the pathology report directs treatment and prognosis. We further assessed sources of obstruction to readability by removing gross descriptions and immunohistochemistry descriptions, and replacing complex pathology terms with less complex synonyms to create modified pathology reports. These results may inform the development of patient-centered pathology reports that may be added to standard pathology reports to improve patient comprehension.
Section snippets
Methods
Institutional review board approval was obtained through the Fred Hutchinson Cancer Research Center and University of Washington Cancer Consortium. The pathology reports from 5 cases each of partial nephrectomy (PN), radical nephrectomy (RN), prostate needle biopsy (PNBx), radical prostatectomy (RP), transurethral resection of bladder tumor (TURBT), radical cystectomy (RC), radical orchiectomy (RO), and retroperitoneal lymph node dissection (RPLND) specimens were obtained. The text from each
Results
The average RI for each pathology report is listed in the Table. TURBT and RC specimens had the highest RIs measured at 12. RP and PNBx reports had the lowest RIs at 10.5 and 10.3, respectively. RO and RPLND reports were measured to have higher readability levels (11.5 and 11.8, respectively) than partial and RN reports (10.9 and 10.8, respectively).
Modifications to the original pathology report decreased the RI of RN, PN, RP, and RO reports significantly (P<0.05). Despite modifications, the RI
Discussion
In this study, we demonstrate that the average reading level for urologic pathology reports is well above the reading level of the average American. For all of the reports studied, no report had a readability score lower than 10.3, corresponding to a 10th grade reading level. This finding indicates that many patients may not be equipped to understand the information in a pathology report. In 2003, the National Assessment of Adult Literacy reported that nearly 30 million adults were functionally
Conclusions
We demonstrate that the average readability of urologic oncology pathology reports is beyond the average American reading level. Modifications to pathology reports may improve readability; however, generation of comprehensible pathology reports may require a dedicated patient-partnered research process, as simple exclusion of gross specimen and immunohistochemistry data does not uniformly improve the reports׳ reading grade level. Patient-centered presentations of health information will likely
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Funding: an award from the Arnold P. Gold Foundation funded this study.