Knowledge and Worry Following Review of Standard vs Patient-Centered Pathology Reports | Health Care Safety | JAMA | JAMA Network

Standard v Patient Centered Reports

New Study Shows Patient-Friendly Pathology Reports Improve Understanding of Prostate Cancer Diagnosis

A recent study published in JAMA has revealed that a new type of pathology report, called the Patient-Centered Pathology Report (PCPR), significantly improves patients’ ability to understand their prostate cancer diagnosis compared to traditional reports. The findings could have a major impact on how men process and respond to their biopsy results, helping them make more informed decisions about their care.

Understanding the PCPR Difference
Pathology reports are a crucial part of a prostate cancer diagnosis, but they are often filled with complex medical terminology that can be difficult for patients to interpret. The study compared three types of reports: a standard university format, a Veterans Affairs (VA) format, and the PCPR. Researchers found that 93% of patients who received a PCPR correctly identified their diagnosis as prostate cancer, compared to only 39% of those who received the university report and 56% of those who received the VA report.

Patients receiving the PCPR also had a better grasp of their risk level. In the study, 93% of PCPR recipients correctly classified their cancer as either low or high risk, whereas only 41% of university report recipients and 36% of VA report recipients did so. Additionally, 84% of those who read a PCPR correctly identified their total Gleason score, a key factor in assessing prostate cancer aggressiveness, compared to 48% and 40% in the other groups.

Reducing Anxiety Through Clarity
One of the most striking findings was the impact of PCPRs on patient worry levels. Participants who received standard reports often felt confused and anxious, regardless of their risk level. Those who received a PCPR, however, reported a more appropriate emotional response—higher worry for high-risk cases and lower worry for low-risk cases. This suggests that clearer communication can help patients better process their diagnosis without unnecessary distress.

Implications for the Prostate Cancer Community
For members of our support group and the broader prostate cancer community, these findings highlight the importance of advocating for patient-friendly pathology reports. Many men struggle with the initial shock and uncertainty of a diagnosis, and a clearer, more understandable report could provide much-needed guidance at a critical time.

Hospitals and healthcare providers should consider implementing PCPRs alongside traditional pathology reports to enhance patient understanding and support better decision-making. If you or a loved one has recently received a prostate cancer diagnosis, ask your doctor if a simplified, patient-centered report is available.

Moving Forward Together
At our support group, we aim to empower men with knowledge and support through every stage of their prostate cancer journey. Understanding your diagnosis is the first step in making informed choices about treatment and care. We encourage open discussions with your healthcare team and among fellow patients to ensure that you have all the information you need to navigate this path with confidence.

For more updates on prostate cancer research and patient advocacy, stay connected with our newsletter and join us at our next support meeting.

Sure! Below is a side-by-side comparison of a Standard University Pathology Report and a Patient-Centered Pathology Report (PCPR) for the same hypothetical prostate biopsy result.

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Standard University Pathology Report

Patient Name: John Doe
Date of Biopsy: February 20, 2025
Specimen: Prostate Core Biopsy
Histologic Diagnosis:

• Adenocarcinoma of the prostate
• Gleason Score: 4 + 3 = 7 (Grade Group 3)
• Tumor Involvement: 50% of core involved
• Perineural Invasion: Present
• Extraprostatic Extension: Not identified
• Margins: Negative
• Pathologist: Dr. A. Smith, MD

Comments:
The Gleason score of 4 + 3 = 7 indicates a moderately aggressive tumor. Treatment options should be discussed with the attending urologist and oncology team.

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Patient-Centered Pathology Report (PCPR)

Your Biopsy Results

• Diagnosis: You have prostate cancer.
• Cancer Grade: Your Gleason score is 4 + 3 = 7, which means your cancer is intermediate-risk and may need treatment.
• Cancer Spread: The cancer is found in 50% of the biopsy sample, but it has not spread outside the prostate.
• What This Means: Your cancer is more likely to grow than low-grade cancer but is still treatable. You should discuss options like surgery, radiation, or active surveillance with your doctor.
• Next Steps: Make an appointment with your doctor to review treatment choices.

What You Can Do Now:

• Learn more about treatment options at [trusted website link].
• Write down questions to ask at your next appointment.
• Consider joining a support group to discuss with others.

Reviewed by: Dr. A. Smith, MD

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Key Differences:

Feature	Standard Report	PCPR
Terminology	Medical jargon (e.g., "adenocarcinoma, perineural invasion")	Plain language (e.g., "you have prostate cancer")
Risk Explanation	Requires interpretation (e.g., "Gleason 4+3=7, Grade Group 3")	Explains what the score means in simple terms
Next Steps	No guidance beyond "consult a doctor"	Provides clear steps for the patient to take
Emotional Consideration	Clinical and technical	Supportive and informative

A PCPR ensures that patients understand their diagnosis without confusion, reducing anxiety and helping them make informed decisions about treatment.

Using an LLM to generate the PCPR

An LLM like Claude could potentially generate Patient-Centered Pathology Reports (PCPRs) from standard pathology reports. This would be a practical application of AI that could significantly improve patient understanding while maintaining clinical accuracy.

Here's how it could work:

Potential Benefits of Using LLMs for PCPRs

1. Scalability: LLMs could generate PCPRs instantly for every pathology report, eliminating the "few minutes" that pathologists currently need to create them manually.

2. Consistency: Once properly trained, an LLM could produce consistently formatted patient-friendly reports following best practices in health communication.

3. Customization: The language complexity could potentially be adjusted based on health literacy levels or patient preferences.

4. Integration with EHRs: This could be implemented directly into electronic health record systems to automatically generate PCPRs alongside standard reports.

Important Considerations

1. Medical Accuracy: LLMs would need to be specifically fine-tuned on pathology reports to ensure they never misinterpret critical diagnostic information.

2. Clinical Validation: Generated PCPRs would need to be validated to ensure they correctly translate technical terms without losing important medical nuances.

3. Regulatory Compliance: Any automated medical report generation would need to meet healthcare regulatory requirements.

4. Human Oversight: A system would likely need to be implemented where pathologists could quickly review the generated PCPRs before release to patients.

5. Template Consistency: The LLM would need to follow established PCPR formats developed by experts like Dr. John L. Gore mentioned in the research.

This application aligns well with the findings of the research article, as it addresses the central problem - the disconnect between technical medical reports and patient understanding. An LLM solution could potentially make PCPRs universal rather than limited to institutions that have implemented specific templates or trained their pathologists in creating them.

The key would be ensuring that the system maintains perfect accuracy while translating complex medical terminology into accessible language that patients can understand.

Q&A

Question 1: "I read about patient-centered pathology reports that make it easier to understand biopsy results. Does your hospital provide these alongside standard reports?"

Possible physician response: "That's a great question. Currently, our hospital uses the standard pathology report format, which is designed primarily for clinicians. We don't yet have the patient-centered format implemented, but I understand your concern about clarity. I'd be happy to go through your report with you in detail to ensure you understand all the important information. I can also advocate with our pathology department about considering this patient-centered approach."

Question 2: "If I receive my biopsy results through the patient portal before our appointment, how can I tell if I have cancer and what the risk level is?"

Possible physician response: "Standard reports can be challenging to interpret. In a prostate biopsy report, look for terms like 'adenocarcinoma' which indicates cancer. For risk assessment, look for the Gleason score—it's usually written as two numbers added together, like '3+3=6' or '4+4=8'. Lower scores like 6 indicate lower risk, while higher scores like 8 indicate higher risk. But I strongly recommend waiting until we can discuss the results together, as these reports contain complex terminology. I can help interpret all the nuances that might not be immediately clear."

Question 3: "The research showed many patients couldn't tell if they had cancer from standard reports. How can we make sure I fully understand my diagnosis?"

Possible physician response: "That study highlights an important gap in medical communication. To ensure you understand your diagnosis, I suggest we schedule a dedicated appointment to review your results together. I can explain the terminology, what the findings mean for your health, and answer all your questions. You might also find it helpful to bring a family member or friend to that appointment as another set of ears. I can provide you with written materials specifically designed for patients that explain your diagnosis in clearer terms."

Question 4: "What information in my pathology report is most critical for me to understand about my condition?"

Possible physician response: "The most critical elements are: whether cancer is present, the Gleason score which indicates aggressiveness, and how much of the prostate is affected. In a prostate biopsy, we look at the Gleason pattern—how abnormal the cells look—and the extent of the cancer. These factors help determine if you have low, intermediate, or high-risk disease, which guides treatment recommendations. I'll make sure you understand each of these elements when we discuss your specific results. The study you mentioned shows these are exactly the areas where patient-centered reports excel in clarity."

Question 5: "Given this research, would you support hospitals adopting these patient-centered pathology reports?"

Possible physician response: "Yes, absolutely. This research makes a compelling case for patient-centered pathology reports. As medicine becomes more patient-centered and with immediate release of results through patient portals, improving the clarity of medical communications is essential. Patients have a right to understand their own health information. I believe adopting these reports would reduce anxiety, improve patient understanding, and lead to more productive discussions between patients and physicians. I'd be happy to share this research with our pathology department as they consider improvements to our reporting systems."

 

Standard vs. Patient-Centered Pathology Reports: A Major Gap in Understanding Cancer Diagnoses

A groundbreaking study published in the February 25, 2025 issue of JAMA reveals that most patients struggle to understand standard pathology reports—including whether they even have cancer. The research highlights an urgent need for more accessible medical information as healthcare systems increasingly release test results directly to patients through online portals.

Study Reveals Concerning Knowledge Gaps

Researchers from the University of Michigan and VA Ann Arbor Healthcare System conducted a study with 2,238 adults to compare understanding of standard pathology reports versus patient-centered pathology reports (PCPRs) for prostate biopsies.

The findings were stark:

• Only 39% of participants who received a standard university format report and 56% who received a VA format report could correctly identify that they had prostate cancer
• In contrast, 93% of those receiving the patient-centered format correctly identified their cancer diagnosis
• Similarly, while 93% of PCPR recipients accurately classified their cancer risk level, only 41% of university format recipients and 36% of VA format recipients could do the same

"Most study participants could not extract basic information—including whether they have cancer—from standard prostate cancer pathology reports but were able to understand this diagnostic information from the PCPRs," the researchers noted.

Impact on Patient Worry and Understanding

The study also found that PCPRs helped patients better interpret the severity of their diagnosis. When using PCPRs, participants reported appropriate worry levels based on cancer risk—higher worry for high-risk cases and lower worry for low-risk cases. This calibrated response wasn't seen with standard reports.

Participants also found PCPRs significantly easier to understand than the standard versions.

What Are Patient-Centered Pathology Reports?

PCPRs present the most important clinical information from pathology reports in plain language. According to the researchers, pathologists can generate these patient-friendly reports as supplements to their standard reports using templates in just a few minutes.

Recommendations for Healthcare Systems

The researchers conclude that "hospital systems should consider including PCPRs with standard pathology reports to improve patient understanding." This approach would help address a significant gap in patient comprehension as immediate release of test results to patients has become required through recent healthcare regulations.

For prostate cancer patients and support groups, advocating for PCPRs could make a meaningful difference in helping newly diagnosed patients understand their condition and make more informed decisions about their care.

Patient-Centered Pathology Reports: Format and Generation

Based on the research article, here's what we know about Patient-Centered Pathology Reports (PCPRs) and how they're created:  The study specifically tested a PCPR for prostate biopsies that was "adapted from the study by Nayak et al." This referenced study (from 2020) likely contains more specific formatting details.

How PCPRs Are Generated

According to the article:

• Pathologists can generate PCPRs as a supplement to their standard report
• They use a template to create these reports
• The process takes "a few minutes" to complete
• The PCPR is meant to accompany, not replace, the standard technical pathology report

Implementation Process

The study suggests that PCPRs could be relatively easy to implement in clinical practice:

1. Pathologists would still create their standard technical report
2. They would then use a template to generate a supplementary PCPR
3. Both reports would be made available to patients
4. This approach preserves the detailed technical information needed by healthcare providers while adding an accessible version for patients

Effectiveness

The study demonstrated that PCPRs dramatically improved patient understanding:

• 93% of PCPR recipients could identify their cancer diagnosis (vs. 39-56% with standard reports)
• 93% could classify their risk level correctly (vs. 36-41% with standard reports)
• 84% could accurately report their Gleason score (vs. 40-48% with standard reports)

The article references Dr. John L. Gore from the University of Washington as "the developer of the patient-centered pathology report" who shared an updated template for evaluation in this study. This suggests that there are established templates already in development that pathology departments could potentially adopt.

Though the article doesn't provide the specific design details of these templates, the focus appears to be on converting complex medical terminology into plain language and clearly highlighting the most important clinical findings for patients.

 

 

Knowledge and Worry Following Review of Standard vs Patient-Centered Pathology Reports | Health Care Safety | JAMA | JAMA Network

January 2, 2025

JAMA. 2025;333(8):717-718. doi:10.1001/jama.2024.25461

The immediate release of test results to patients via patient portals is required.^1,2 Unfortunately, pathology reports contain complex medical terminology, are not written for patients, and are often read by patients before discussion with their clinician.^3,4 Whether patients can extract relevant diagnostic knowledge from such reports is unclear. To address this challenge, researchers have designed patient-centered pathology report (PCPR) formats, which present the most important clinical data from the pathology report in plain language.⁵ Pathologists can generate PCPRs as a supplement to their standard report using a template in a few minutes. However, few studies of PCPRs exist, and no previous study has directly compared PCPRs with standard formats in current use.⁶ This study compared diagnosis knowledge and worry among adults presented with different formats of prostate biopsy reports.