Many people find medical test results hard to understand

In April 2021, a new rule from the 21st Century Cures Act came into effect.

It required all medical test results to be shared with patients through their electronic medical records as soon as they are ready.

While this change was intended to improve transparency, it has created a challenge: many patients now see their test results before their doctors do.

The problem is that most medical reports are written for healthcare professionals, not for patients.

Dr. Cathryn Lapedis, a pathologist at the University of Michigan Health, explains that standard pathology reports are full of technical terms meant for specialists like surgeons or cancer doctors.

These reports are often difficult for patients to understand. For example, a standard report might use the term “prostatic adenocarcinoma,” which is a type of prostate cancer, but patients might not recognize what it means.

To address this issue, Dr. Lapedis and her colleagues decided to explore whether simplifying these reports could help. They created a “patient-centered pathology report” designed to use simpler language and clear formatting. For example, instead of using medical jargon, this new type of report would simply say “prostate cancer.”

The team conducted a study, published in JAMA, to test how well people could understand standard pathology reports compared to the patient-friendly version. They recruited over 2,200 adults aged 55 to 84, all of whom had prostates but no history of prostate cancer.

Participants were given a hypothetical situation where they sought medical care for urinary problems, had a biopsy, and received their test results through a patient portal.

Each participant was randomly assigned to see one of three types of reports: a standard report used at the University of Michigan, a standard report from the VA Ann Arbor Health System, or the simplified patient-centered report.

They were then asked to answer key questions about the results, such as whether or not they had prostate cancer, their Gleason score (a measure of how aggressive the cancer is), and their risk level. The participants also rated their level of worry based on the information they read.

The findings were clear. Most people struggled to understand the standard reports. For example, only 39% of participants who reviewed the University of Michigan’s standard report correctly identified that it indicated cancer.

In contrast, 93% of participants who received the patient-centered report were able to recognize that the test showed prostate cancer.

Additionally, the patient-centered reports helped participants better connect their level of worry with their actual risk. Those with high-risk results reported higher worry levels, while those with low-risk results felt less worried—something that didn’t happen as consistently with the standard reports.

Dr. Lapedis and her team believe that hospitals should consider including patient-centered reports alongside traditional ones to improve patient understanding. They plan to study the use of these simplified reports at the University of Michigan to further explore their benefits.

In the meantime, Dr. Lapedis advises patients to talk with their doctors before undergoing tests. Asking about key terms to look for in reports can help patients better understand their results and avoid unnecessary confusion or anxiety.

This approach could make medical information more accessible and less intimidating for patients, ensuring they feel more informed and empowered when managing their health.

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The research findings can be found in JAMA.