by Christos Evangelou, MSc, PhD – Medical Writer and Editor

A recent study showed that most patients struggle to extract basic information from standard pathology reports, including whether they have cancer. However, implementation of a new patient-centered format dramatically improved comprehension, with 93% of patients being able to correctly identify their cancer diagnosis compared to only 39%–56% with traditional formats. These findings highlight a critical gap in healthcare communication and suggest a promising solution that could help patients better understand their diagnosis.

The report was published in JAMA.

The Growing Challenge of Medical Communication

The implementation of the 21st Century Cures Act has ushered in a new era of healthcare transparency, requiring healthcare providers to release test results directly to patients through online portals.¹ Although this increased access to medical information is a positive development, patients often encounter complex medical reports before having the opportunity to discuss them with their healthcare providers.

This challenge is particularly true for pathology reports. These reports are written in a technical language intended for communication between medical professionals, making them virtually incomprehensible to most patients. This communication barrier can lead to unnecessary anxiety, misunderstandings, and potentially poor healthcare decisions.

For Dr. Cathryn J. Lapedis, the lead author of the study, the study had personal significance.

“After a head injury, I had a follow-up MRI, which showed a lesion. I got the result on a Saturday, and I was not sure how to interpret it, even though I am a doctor,” she recalled. “I was in a panic, imagining the worst-case scenario, but when I spoke to my doctor on Monday, he reassured me that there was likely no cause for worry.”

This experience, she explained, became a driving force behind her research into patient-centered pathology communications.

Despite being a physician herself, Dr. Lapedis’s personal experience with confusion in medical reports underscores the universal nature of this challenge and the urgent need for more patient-centered communication in healthcare.

A Novel Approach to Patient Communication

To address challenges in communication of pathology results, researchers have developed patient-centered pathology report (PCPR) formats that present clinical information in plain language.¹ Although these reports serve as supplements to standard technical reports and can be generated quickly by pathologists using existing templates, their effectiveness compared to traditional formats in current use had not been evaluated until now.

Comparison of Pathology Formats

Researchers from Michigan Medicine, Veterans Affairs (VA) Ann Arbor Healthcare System, and the University of Michigan School of Public Health conducted a study involving 2,238 adults aged 55-84 years. The study focused on prostate biopsy reports, recruiting individuals with no history of prostate cancer.¹

To ensure representativeness, the researchers carefully selected participants to mirror the racial and ethnic distribution of new prostate cancer cases in the United States, including 20.5% Black participants, 15.2% Hispanic participants, 3.2% Asian participants, and 73.8% White participants.¹

Participants were presented with a hypothetical scenario in which they underwent prostate biopsy due to urination problems. They were then randomly assigned to receive one of three report formats: a patient-centered pathology report (PCPR), a standard university hospital format, or a standard VA format.¹ To evaluate how well the formats communicated different levels of risk, participants were also randomized to receive either a high-risk scenario (Gleason score 4+4=8) or a low-risk scenario (Gleason score 3+3=6).

The researchers measured the ability of participants to identify whether cancer was present, determine the total Gleason score, classify the risk level, rate their level of worry, and assess the ease of understanding the report.

Study Findings

The study revealed dramatic differences in comprehension between the PCPR and standard formats. In the PCPR group, 93% of participants correctly identified the presence of cancer, whereas only 39% of those receiving the university format and 56% receiving the VA format could do the same.¹

Dr. Lapedis described these findings as alarming:

“61% of people receiving the university standard pathology report could not accurately identify that the report showed cancer. This tells us that people are not able to get basic information, like whether or not they have cancer, from our standard pathology reports, and is a call to action for us to make them better.”

Risk assessment showed similar differences. Among PCPR recipients, 93% accurately classified their risk level, compared to just 41% for the university format and 36% for the VA format.¹ The ability to identify the specific Gleason score, a critical measure of cancer severity, was also better with the PCPR format, with 84% of recipients correctly reporting the score compared to 48% and 40% for the university and VA formats, respectively.

Moreover, the study showed that participants who received PCPRs were better able to differentiate between risk levels, suggesting that PCPR participants who received high-risk scenarios reported higher levels of worry, while those with low-risk scenarios reported lower levels of worry.¹ This suggests that PCPRs not only improve comprehension but also help patients better understand the implications of their diagnosis.

“This survey was completed in a diverse sample of people which mirrored the rate of new prostate cancer cases in terms of race and ethnicity in the US, and education levels for all three report type assignments were similar,” noted Dr.

Lapedis, emphasizing the broad applicability of their findings across different population groups.

Implementation Challenges and Practical Solutions

Although the results are promising, implementing PCPRs in clinical practice presents certain challenges. Dr. Lapedis envisions PCPRs “being added as a supplement to a standard pathology report which is entered by the pathologist at the time of signing out the report.” However, she identified two main challenges.

“Adding the PCPR template to the standard report will take pathologist’s time. While the PCPR report is expected to only add a few minutes to each individual pathology report, it is yet another thing for a busy pathologist to add to and check in the numerous reports they complete each day,” she explained. “It will be important to make PCPRs as easy as possible to minimize burden to the pathologist.”

The second challenge involves a fundamental shift in medical culture.

“It will be a shift in mindset as to who the target audience of a pathology report is,” Dr. Lapedis noted. “When pathologists include a PCPR, they are including the patient as a target audience for their report, which is not currently the standard of care. I imagine some in the hospital system will readily and eagerly adjust to this shift, but others may feel more hesitant.”

The research team is already planning the next steps to validate their findings in real-world settings.

“We are planning to study PCPRs in a pilot at the University of Michigan to see if the same things we saw in our hypothetical scenario are true in our population of patients,” Dr. Lapedis shared. “We will aim to explore feasibility and implementation of PCPRs in our health system during this project as well.”

The study received financial support from the Institute for Healthcare Policy and Innovation (Sandy-Hassmiller Early Career Health Services Research Award) and the Research Scouts Program.

References

1. Lapedis CJ, Kurnot SR, Bergholtz SE, et al. Knowledge and Worry Following Review of Standard vs Patient-Centered Pathology Reports. JAMA. Published online January 2, 2025. doi:10.1001/jama.2024.25461