Patients are confused and overwhelmed by medical test results

Author(s):

Austin Littrell

Key Takeaways

The 21st Century Cures Act requires immediate release of medical test results, challenging patients with complex pathology report terminology.
Patient-centered pathology report (PCPR) formats simplify language, improving patient comprehension of medical diagnoses.
A study found 93% of participants using PCPRs accurately identified prostate cancer, compared to 39% with standard reports.
PCPRs align patients' worry levels more closely with their actual risk, enhancing understanding and communication.
Lapedis recommends including PCPRs with standard reports and discussing key terms with patients before tests.

Most people struggle to pull basic information out of standard pathology reports—like whether or not they have cancer.

A 2021 provision in the 21^st Century Cures Act requires that all medical test results be released to a patient’s electronic medical record (EMR) immediately upon their availability. Unfortunately, pathology reports are not written with patients in mind, containing complex medical terminology, but they are often read by patients prior to discussions with their clinicians.

“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,” Cathryn Lapedis, MD, MPH, department of pathology at the University of Michigan Health, said in a university release.

To address this challenge, researchers established patient-centered pathology report (PCPR) formats, which present key information from pathology reports in plain language. In a research letter published in the Journal of the American Medical Association (JAMA), Lapedis and collogues compared diagnosis knowledge and levels of worry among 2,238 adults presented with prostate biopsy reports in different formats.

In other words

“A [PCPR] gives important information on the patient’s diagnosis in a clear format that minimizes medical terminology,” Lapedis explained. “For example, a standard pathology report will include a term like prostatic adenocarcinoma, but the [PCPR] will simply call it prostate cancer.”

The study participants—adults aged 55 to 84 who had a prostate but no history of prostate cancer—were given a hypothetical scenario in which they sought care due to troubling urinary symptoms, received a biopsy and would receive their test results through their patient portal.

Participants were randomized to receive one of three report formats:

A standard university report.
A standard Veterans Affairs (VA) report.
A PCPR.

Participants also received a randomized risk level.

Upon receiving their results, study participants were asked to identify their diagnosis, their Gleason score, which reports how aggressive the prostate cancer is, and their risk level. They were also asked their level of worry based on the results they were shown.

“We found that most people cannot get basic information—like whether or not they have prostate cancer—from standard pathology reports. For example, in our participants reviewing the standard university report, only 39% could accurately identify that the report showed cancer,” Lapdeis said.

Additional findings showed that 93% of those who received the PCPR were able to accurately identify that the report showed prostate cancer. Participants’ level of worry was also more closely associated with their risk level with the PCPR compared to standard reports.

Lapedis recommends that PCPRs be included with standard reports in order to improve patient understanding. She also advises that patients and clinicians discuss words to look out for before a test is administered.