Waiting for test results can be stressful — especially when the news could have a huge impact on your health. Patients often experience anxiety as they schedule imaging, undergo a procedure, await results, and then receive news about their health — leading to the term “scanxiety.”

“Scanxiety is actually something that patients with cancer first started talking about not too long ago and it’s now something that we all talk about with each other all the time. It’s the anxiety, worry, and stress related to particular imaging studies that patients get,” says Amanda C. Itliong, a patient with cancer for 14 years and co-chair of the Quality Experience Committee of the ACR Commission on Patient- and Family-Centered Care. “It’s usually related to the build-up to having to go get your scans, the nervousness of the process, the waiting period for results, and how that’s going to maybe change your whole life.”

Understanding Scanxiety

While the term is gaining notoriety, knowledge, and education about scanxiety still has a long way to go. The Quality Experience Committee formed the Scanxiety Workgroup to spread awareness of scanxiety and the effect it can have on patients’ lives. The Workgroup consists of both patients and radiologists, with the goal of bridging the relationship between radiologist and patient to help ease scanxiety.

According to Vani Vijayakumar, MD, FACR, member of the member of the Quality Experience Committee and chief of nuclear medicine in the department of radiology at the University of Mississippi Medical Center, scanxiety can be related to the act of getting the scan itself. “There are various reasons why patients get scared,” Vijayakumar says. “It could be fear of the machine, for instance, if you get an MRI. They now have open MRIs, but originally, we used to have closed MRIs. That’s a very long time in a closed machine, so a patient can get claustrophobic.”

Scanxiety Workgroup member and patient adviser Christine Abbott agrees. “A lot of times I’m going to have a scan, and I don’t really have a lot of information about what it’s going to be,” she says. “I can’t visualize what they’re going to do, which adds to the anxiety before and during the procedure.”

Abbott also brought up another point that plays a big factor into scanxiety: misunderstanding the result of the scan. She recalls an experience she had roughly eight years ago. “The first time my MRI for my multiple sclerosis came back, it said there were significant areas of brain death,” Abbott says. “To me, significant is a quantity amount. How much of my brain is now gone and dead? Should I be driving? Should I be working?” Abbott then got her radiologist on the phone to discover the results were not as bad as they initially sounded and that a portion of her brain had been attacked over and over again to the point that it couldn’t heal. However, no significant life changes were expected. According to Abbott, it was at this moment that she realized that there was a disconnect between the clinical language in the radiology report and what the patient perceived.

There are various reasons why patients get scared, it could be fear of the machine, for instance, if you get an MRI. They now have open MRIs, but originally, we used to have closed MRIs. That's very long time in a closed machine, so a patient can get claustrophobic.

Raising Awareness

Sabiha Raoof, MD, FACR, co-chair of the Quality Experience Committee and chair of the department of radiology at Jamaica and Flushing Hospitals, has experienced both sides of scanxiety, as a radiologist and as a breast cancer survivor. Finding the right way to raise awareness is an important topic for the Scanxiety Workgroup, Raoof says. “We’ve tried to brainstorm and find out what we have learned from our own experience or from our patients and how we need to get not just more information out to the patient, but also educate radiologists that scanxiety is a real thing,” she says.

Raoof believes that an increase in educational material on scanxiety will go a long way in achieving the Workgroup’s goal of raising awareness. “At my two departments here in Queens, New York, we have ‘Speak Up’ posters  from the Joint Commission,” Raoof says. “The posters describe what an MRI is, what a CT is, and what an X-ray is in plain simple English. We have the posters in our patient waiting areas and photographs of our radiologists with their subspecialties listed so if patients have any questions for a particular radiologist, they can
ask. We also put the radiologist’s name, email address, and phone number at the bottom of the report.”

Along with educating people on what scanxiety is, the Workgroup is also seeking solutions to help calm patients’ minds as they head into and await results of scans. This requires looking into the best practices when it comes to scanxiety from across the country. Itliong, the first patient to co-chair a committee for the ACR, has seen many ways practices have helped with scanxiety — from articles by patients talking about what they went through to social media hashtags that help patients connect with each other to share experiences. “One of the best practices that I’ve seen as a patient was at Michigan Medicine. While you’re waiting, the room has a blank binder with paper in it sitting on the table next to the magazines. They invite patients to write notes to other patients about what they’re experiencing. It is so simple and so powerful,” says Itliong.

There is still a lot of work to be done to address scanxiety in radiology. The Workgroup feels that the more members of the ACR begin to talk and learn about it, the sooner radiologists can come together to improve the patient experience. “We hope by raising awareness about scanxiety, we can make patients feel less anxious,” says Vijayakumar. “We want to create a good experience for patients. That’s our main goal of doing this.”