The Problem of Scanxiety

The New York Times had a nice piece a couple of days ago on Scanxiety -- the anxiety that comes from waiting for test results (like scans). The article focuses especially on laws (and voluntary practices) involving access for patients to check their own lab and scan results.

This has some good and bad parts.

The good is that patients don't have to wait for doctors to deliver the results. That's often where the scanxiety comes from  -- having a doctor say, "We should have results in three or four days," and then waiting by the phone on day three, day four, day five, calling the office and not getting a response, etc. Very frustrating. Being able to go online to find one's own results would be a big help, especially if a law required those results to be available within a certain number of days. I'm all for patient empowerment.

On the other hand, knowledge can be a dangerous thing. Having a lot of information, but not the skills to interpret it, can cause even more anxiety. A quick, hypothetical example: a newly diagnosed Follicular Lymphoma patient gets results that say he has stage 4 grade 1 fNHL. Everybody knows what stage 4 cancer means, right? Except with lymphoma, because it is a systemic cancer, stage 4 is usually as treatable as stage 2, because the Bendamustine or whatever is going to go to all of those places that cancer might exist, anyway. In other words, the treatment will hit all of the nodes, plus the liver and spleen, and other places, whether there are cancer cells present or not.

But a newly diagnosed patient won't know that. So they wait hours (maybe even days) for a doctor to call back and explain and answer questions. Double the anxiety, because of the misinformation.

I think of these online results as kind of like online college classes. Very helpful for many people in many situations, but sometimes you need to speak one-on-one, face-to-face, with a teacher, someone who can not only answer your questions, but adapt to what he or she sees in your body language, tone of voice, etc. ("Yes, I understand" seems straightforward in a student's email, but can have a hundred different meanings face-to-face.)

So, ideally, a patient will get results online and then have access to further information to help interpret. That would, hopefully, be a doctor or nurse who knows what it all means. But maybe a reliable web site (though there's no guarantee of reliability, or of a site understanding the potential complexity of a diagnosis). Maybe even a nice online support group (though, again, it could take hours or days for a reliable response; at the very least, you're likely to get some anxiety-reducing sympathy, anyway, from support group members).

So overall, I think I'm good with accessible, online results. It will likely take some time before the system is perfected, which means lots of anxiety in the meantime. But I think patient empowerment wins in the end.