In April 2021, a provision in the 21st Century Cures Act took effect in the US, requiring that all medical test results be released to a patient's electronic medical record as soon as they become available. As a result, many patients are seeing and reading their test results even before their doctor has. However, many medical reports aren't written with patients in mind, leading to confusion and anxiety.
Dr. Cathryn Lapedis, M.D., M.P.H., from the Department of Pathology at University of Michigan Health, highlighted the issue: "A standard pathology report is written by a pathologist for a clinical specialist like a surgeon or a cancer doctor or for other pathologists to read."
In a research letter published in JAMA, Dr. Lapedis and her colleagues tested whether people could understand standard pathology reports and whether a patient-centered report might improve patient understanding. She explained, "A patient-centered pathology report gives important information on the patient's diagnosis in a clear format that minimizes medical terminology." Providing an example, she said, "A standard pathology report will include a term like prostatic adenocarcinoma, but the patient-centered report will simply call it prostate cancer."
For the study, Dr. Lapedis and her team recruited 2,238 adults, aged 55 to 84, who had a prostate but no history of prostate cancer. Participants were presented with a hypothetical scenario in which they sought care due to troubling urinary symptoms, received a biopsy, and then obtained results from that test through their patient portal.
Participants were shown one of three types of reports: a standard University report identical to the format used at University of Michigan, a standard VA report identical to the format used at VA Ann Arbor Health System, or a patient-centered pathology report. They were asked to identify their diagnosis, Gleason score (a number that reports how aggressive prostate cancer is), and their risk level. Additionally, participants reported their level of worry based on the results.
"We found that most people cannot get basic information—like whether or not they have prostate cancer—from standard pathology reports," Dr. Lapedis noted. "For example, in our participants reviewing the standard University report, only 39 percent could accurately identify that the report showed cancer." In stark contrast, 93% of those who received the patient-centered pathology report accurately identified that the report showed prostate cancer.
Furthermore, the study found that participants' level of worry was more closely associated with their risk level—high worry with high risk and low worry with low risk—when reviewing the patient-centered report compared to the standard reports.
Dr. Lapedis stressed the importance of these findings: "We recommend that hospital systems consider including patient-centered pathology reports with standard reports to improve patient understanding." She added that her team plans to study the use of patient-centered reports at University of Michigan.
Until such reports become widely available, Dr. Lapedis advises patients to engage proactively with their healthcare providers. "Talk with your clinicians about what words to look for in your reports even before having the test," she suggested.
The study underscores the critical need for clear communication in medical documentation to empower patients in managing their health.
Additional authors of the study include Sophia R. Kurnot, Sarah E. Bergholtz, Scott R. Owens, Sarah T. Hawley, Todd M. Morgan, and Brian J. Zikmund-Fisher. The paper, titled "Knowledge and Worry Following Review of Standard vs Patient-Centered Pathology Reports," was published in JAMA.
This article was written in collaboration with generative AI company Alchemiq