Thanks to federal rules enacted in 2021, we all have access to information in our electronic health records, including test results. That should be a good thing.
But a recent study in JAMA Network Open highlighted how immediate access to test results — often before a health care provider can help explain them or put them in context — could contribute to worry among some patients who spend their time online, refreshing their screens, waiting for those results to come in.
The worry about tests and waiting for results has an unofficial term among cancer patients and organizations: “scanxiety.” People can develop symptoms of anxiety, including fearful thoughts, nausea, trouble sleeping, and difficulty focusing, while waiting to get results of imaging scans and other tests, according to a blog post from St. Jude Children’s Research Hospital.
Adult patients receiving outpatient test results in 2022 and 2023 through the patient portal at Vanderbilt University Medical Center in Nashville, Tenn., refreshed their screens while logged into the patient portal for about 26% of all test results, researchers at Vanderbilt and four other academic institutions found. They did so more commonly for highly sensitive tests (refreshing for 39% of test results) such as cancer imaging, but refresh behavior even for nonsensitive tests like a complete blood count also was seen, and was associated with a higher probability of initiating some kind of message to health providers within 24 hours of reviewing those results.
During the two-year study period, 290,349 patients reviewed 968,774 test results. Results were most often reviewed by patients who were white and English-speaking. Looking at refresh behavior in a subset of over 108,000 patients for 250,000-plus test results, investigators saw a mean of 2.5 refreshes per result. Patients who had set up notifications for results had higher odds of frequent refresh behavior, and female patients overall had higher odds of frequent refreshing compared with male patients.
There are multiple reasons why people might refresh for results, authors said, including scanxiety, being proactive about care or highly engaged in self-management.
“We were curious if refresh, refresh, refresh behavior could be measured,” study co-author S. Trent Rosenbloom, M.D., MPH, told STAT in a recent article. He is director of the health system’s patient portal. “If we could observe where people are more likely to [refresh], it might help us understand where patients have anxiety.”
The larger picture
Overall, more than 40% of test results classified as sensitive are reviewed by patients before their clinicians, the authors wrote, “which has been associated with a doubling of patient-initiated messages on the portal.”
While some resources have been developed to help patients review results, including test-specific information and education modules, many patients have reported that heightened worry while awaiting results often exceeds the stress associated with receiving results, Rosenbloom and colleagues wrote. Some organizations have prioritized pre-counseling when tests are ordered to prepare patients about possible findings and expectations for follow-up.
Identifying patients who exhibit behaviors associated with worry while waiting for results can allow health systems to proactively support patients, improve their experience and reduce the volume of messages, wrote the authors.
The strategies to handle scanxiety are similar to those for other types of anxiety: exercise, relaxation techniques such as yoga or meditation, distracting yourself with enjoyable activities, etc. It also may help patients to ask the care team how long results will take, if results will come all at once (if there are several), and what support resources are available if needed to process results that may be upsetting.
Kentucky and California passed laws allowing a pause before patients are given sensitive test results, 72 hours in the case of Kentucky, to allow doctors more time to review results before releasing them, especially if results could be upsetting, according to the American Medical Association. The legislation was intended to limit the risk of patients learning of a life-altering diagnosis without professional guidance, or misinterpreting results. At the moment, electronic health record systems offer limited flexibility to incorporate patient preferences into the release of results.
Story ideas
There are several ways journalists can use this study as a jumping-off point to their own stories about scanxiety, such as:
- Talk to providers in California and Kentucky to see how having the extra time impacts their test result review and consults with patients.
- Talk to hospitals in your area to see how often patients are accessing test results, and what patient populations are most likely to do so.
- See how hospitals are preparing patients for the receipt of potentially upsetting news. Have they developed any educational models? Put information online? Do they include any special instructions when patients complete their testing?
- From a tech angle, speak with electronic health record vendors. Are they incorporating any features that could incorporate patient preferences to when/how they view test results?
- Investigate the health equity angle: In this study, people who accessed test results were mostly white and English-speaking. Are results available in other languages if necessary? Are there any health literacy/technology issues being addressed in particular health systems?
Resources
- Repeated Access to Patient Portal While Awaiting Test Results and Patient-Initiated Messaging — study from JAMA Network Open.
- As more patients get automated test results, researchers seek ways to calm their nerves — story from STAT.
- Patients can now access all health information in electronic record sets — AHCJ blog post from October 2022.
- Waiting on Test Results: How to Manage Scanxiety — blog post from St. Jude Children’s Research Hospital.
- States move to give patients more control over test results — American Medical Association.
