Half of us can't say whether we have PCa based on standard biopsy report--but nearly 100% get patient-friendly reports
ASPI webinar Saturday to focus on understanding pathology reports
By Howard Wolinsky
These days, most of us probably see the pathologist’s biopsy report before our urologists do. This can trigger anxiety because we don’t understand them—and also if we do and can’t reach the doctor.
The U.S. the Cures Act since 2016 has required immediate release of biopsies and other pathology test results. The intentions are good in terms of transparency and consumerism.
These reports tell us whether the pathologist has found cancer, and, if cancer is present, how aggressive it is. But can be days before you reach your doctor to interpret the report.
These reports are vital. But it’s an epic fail of the system that we don’t understand them. The reports are really prepared for urologists—not us.
Cathryn J. Lapedis, M.D., clinical pathologist at Michigan Medicine (Go Blue!) in Ann Arbor, and colleagues reported in the JAMA Network on a study of more than 2,000 men aged 55-84: “Most study participants could not extract basic information — including whether they have cancer — from standard prostate cancer pathology reports...”
But the researchers found high comprehension of diagnostic information in the group that read special patient-centered pathology reports.
This is the first randomized study comparing patient-friendly reports to standard medical biopsy reports.
Participants included 2,238 adults (mean age, 65.1 years; 3.2% of participants were Asian, 20.5% were Black, 15.2% were Hispanic, 73.8% were White, and 8.3% identified as Other) who met eligibility criteria. To mimic new cases of prostate cancer, researchers recruited subjects who had a prostate and no history of prostate cancer.
(Dr. Cathryn J. Lapedis, MD)
The analysis included 799 participants randomly assigned to the PCPR group, 706 to the standard university report group, and 733 to the standard Veterans Affairs (VA) report group.
The researchers found that 93 percent of participants who received the PCPR accurately identified that the report showed prostate cancer compared with 39 percent of those who received the university report and 56 percent of those who received the VA report.
Accuracy in reporting total Gleason score also differed by format (84% for the PCPR group vs 48% for the university group and 40% for the VA group.
More PCPR recipients accurately classified the report as showing either low or high risk (93 percent) compared with 41 percent of university recipients and 36 percent of VA recipients.
(Sample of a patient-centered report for low-risk prostate cancer.)
Study participants read a hypothetical scenario in which they presented to the urologist for trouble urinating, underwent a prostate biopsy procedure, were prepared for the range of possible biopsy results as they would be by a typical urologist, and received notification of their pathology report in the patient portal. Participants were randomized to receive 1 of 3 report formats (a PCPR), a standard university format, or a standard Veterans Affairs [VA] format) and 1 of 2 risk levels (high: Gleason score of 4 + 4 = 8; low: Gleason score of 3 + 3 = 6).”
The researchers said: “Pathologists can generate PCPRs as a supplement to their standard report using a template in a few minutes.”
(Sample of a typical university biopsy report.)
The tools are there to quickly translate pathology reports into plain English to help patients better understand findings of whether cancer is present and the Gleason score/Grade Group is and deliver the resukts to patient portals.
Why aren’t patients, urologists, pathologists and hospitals demanding patient-centered pathology reports to increase health literacy and reduce worry in patients being tested for prostate cancer?
BTW, I am working with a group of prostate experts to build a better biopsy report, Check here for background on the project in which I’m involved: https://pubmed.ncbi.nlm.nih.gov/37285311/
To paraphrase 19th century philosopher Ralph Waldo Emerson: “Build a better biopsy report, and the world will build a path to your door.” And maybe a few patients will better understand their biopsies and reduce their worries.
Please answer a survey on genetic testing and PCa
At the end of July, I will be moderating a program for ASPI on the importance of genetic testing for prostate cancer patients. Can you respond to this survey: https://forms.gle/Uv9d5gaZYHadZ5Qh9
Tick-tock—Cracking the code on pathology reports: Helping patients navigate medicalese top ensure better care
By Howard Wolinsky
The next webinar from Active Surveillance Patients International will cover the problems with patients understanding pathology reports and even Gleason scores—and what can be done about it.
Cathryn J. Lapedis, MD, MPH, a Clinical Assistant Professor of Pathology at Michigan Medicine in Ann Arbor, will be the featured speaker at the ASPI webinar from noon to 1:30 p.m. on Saturday, June 28.
Please register for the meeting here.
Lapedis was the lead author of a recent study in JAMA that found a 93% comprehension of patient-centered pathology reports compared with 39% of those who read a report from the University of Michigan and 56% reading a pathology report from the Veterans Administration. (See above.)
During the webinar, Dr. Lapedis will summarize her research on how what average folks ages 55-84 (key prostate demographics) are able to get from a couple different reports [not much].
She will hold a mini pathology explanation clinic with visuals on what the cancer looks like under the microscope. She’s teach us what normal and cancer looks like and how Gleason scoring works. She’ll also teach us how to approach a pathology report, which we AS patients may encounter many times over the years.
Lapedis has fellowship training in medical renal and gastrointestinal pathology. Her research centers on rethinking the way pathology results are communicated to patients and the healthcare system. She completed an in-depth analysis of key stakeholders’ attitudes towards patient-pathologist interactions, and is currently piloting early interventions in patient-centered pathology communications.
Please send questions in advance to: contactus@aspatients.org
You’ve highlighted a critical—and often overlooked—challenge in prostate cancer care: **shared decision-making is only as strong as the information patients receive and understand**. If pathology reports are both error-prone and difficult to interpret, patients (and their advocates) are at a severe disadvantage.
Let’s break down the problem and explore actionable solutions:
## The Problem: Barriers to Shared Decision-Making
1. **Pathology Report Errors**
- As Dr. Jonathan Epstein points out, a 25% error rate in pathology review is alarming. Misclassification can lead to overtreatment or undertreatment.
- Reasons include variability in pathologist expertise, subjective interpretation, and inconsistent standards across labs.
2. **Incomprehensible Reports**
- Most pathology reports are written for clinicians, not patients. They use technical language and lack clear explanations of what the findings mean for the individual.
3. **Communication Gaps**
- Even well-intentioned clinicians may struggle to translate complex findings into actionable, understandable information for patients.
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## Solutions: Empowering Patients and Advocates
### 1. **Promote Second Opinions and Central Review**
- Encourage patients to seek a second pathology review, ideally at a high-volume center or by a genitourinary pathology specialist (like Dr. Epstein).
- Advocacy groups can compile and share lists of reputable centers offering expert review.
### 2. **Standardize and Simplify Reporting**
- Push for adoption of synoptic (structured) reporting, which uses checklists and standard terms to reduce ambiguity and errors.
- Advocate for “patient-friendly” report summaries that explain key findings in plain language, including:
- What was found (e.g., Gleason score, margins)
- What it means for prognosis and treatment options
### 3. **Leverage Technology**
- Support development of digital tools and apps that translate pathology reports into lay terms and visualize risk.
- Promote platforms that allow patients to upload reports for expert review or AI-powered second reads (with human oversight).
### 4. **Education and Navigation**
- Train patient navigators or advocates to help interpret reports and guide shared decision-making.
- Develop and distribute educational materials (videos, infographics) that demystify pathology terms and grading.
### 5. **Advocate for Transparency and Accountability**
- Work with professional societies to set minimum standards for pathology quality and reporting.
- Encourage public reporting of error rates and lab accreditation status.
### 6. **Foster Open Dialogue**
- Encourage clinicians to invite questions and check for understanding (“teach-back” method).
- Support shared visits where patients, family members, and multidisciplinary teams review findings together.
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## What You Can Do Now
- **Ask for your slides:** Patients can request their pathology slides be sent to a specialist for review.
- **Bring an advocate:** Have a trusted person with you during appointments to take notes and ask questions.
- **Use reputable resources:** Direct patients to organizations like the ANCAN and PCRI.
- **Push for change:** Join or support advocacy initiatives calling for improved pathology standards and patient-centered communication.
**Bottom line:**
Shared decision-making is only possible when patients have access to accurate, understandable information. Advocacy must continue to push for both higher standards in pathology and better communication tools, so that every patient is truly empowered to participate in their care.