The JAMA Open Network has a really interesting article from just a few days ago called "Patient Anxiety About Immediately Released Laboratory Test Results." I've always found it really interesting how patients have reacted to the law in the U.S. that says test results need to be posted in their electronic records immediately, even before a doctor has had a chance to look at them. This article examines how patients react to lab results before a doctor sees them. I've had so many tests in the last few months that the idea is especially interesting to me now.
A little bit more background. In 2021 a law was passed that said patients have a right to see their lab results without a doctor interpreting them. And so most doctors and hospitals post the results to a patient's electronic records as soon as they are available. Foe example, a few weeks ago I had a blood test to prepare for my surgery. This coincided with my annual physical from my regular Primary Care Physician. As part of my physical, I do a complete blood test. So I had one test for both purposes -- my annual physical and my upcoming surgery. I had the test at 7:00 in the morning and I had the results by noon. I looked at them that afternoon. It wasn't until the next day that I got a message in my electronic records from my doctor that said there were a few things she wanted to talk about.
For some patients, that time gap could be very difficult emotionally. It was over a day until the doctor commented on the results, and then almost two weeks before we actually met to talk about the results. There has been a lot of commentary in the five years about this law, whether or not it is a good thing that patience can access their records without necessarily understanding what they mean. So this research from JAMA Open Network was meant to examine just how much anxiety patients experienced from seeing their test results, rather than meeting with a doctor to discuss them.
The study was conducted at one hospital in the United States. The researchers looked at electronic records to determine which patients accessed their laboratory results before they spoke to a doctor. They found almost 14,000 patients who had done that out of 234,000 that were seen at the hospital over 3 months. About 2/3 of them had already received an abnormal lab report within the previous 45 days.
Patients in the study were given surveys to determine how anxious they were while waiting for test results and then after getting them. About 28% of the patients reported feeling somewhat, very, or extremely anxious while waiting for the results. That's not surprising. In fact, it seems a little low to me. But it's also true that people get lab tests for all kinds of things, lots of which are routine. Interestingly, the groups that felt extremely anxious were usually female, had multiple health issues, or were between 35 and 49 years old. That age category is really interesting to me. That's when I was diagnosed with FL (at age 40). It's that time when you feel like you're too young to be sick, so you worry more when you might be.
Patients also took a survey after they received their results. Almost all of them felt less anxious after getting their results. That might have been because the results were normal, and if they weren't normal, the implications weren't potentially life-changing. But it could also have been that, even with an abnormal result, the burden of waiting was gone. Just knowing you can start dealing with a problem can make it easier to deal with it. I think a few of us are familiar with that idea.
However 4.6% of the patients did feel more anxious after getting the results. The groups associated with this had higher anxiety before the test results, and interestingly, this increase in anxiety was not associated with receiving abnormal results. Except for one group: those who were potentially being diagnosed with cancer.
So all of that makes sense to me, too. Sometimes just knowing makes things better. And sometimes knowing it's cancer makes things worse.
The researchers gave one final survey. They wanted to know whether or not patients were going to look at the results on their own in the future. Of those 12,000 patients who took this final survey, about 88% planned to keep looking at results immediately on their own before a doctor looked at them. About 6% said they would wait to speak to a doctor first before looking at the results. And about 6% weren't sure. Even 80% of those patients who reported increased anxiety after getting the results said they planned to look at them on their own anyway.
It's an interesting study. I think I'm a little bit surprised that so few patients want to wait for a doctor or are less anxious after viewing results on their own. I probably shouldn't be surprised. We are kind of in a place now where people are taking more control of their own men health, which can be a good thing. I'm always in favor of patient empowerment, especially when it comes from patients getting information -- good, reliable information -- on their own. But I also know there is a downside to that. When people try to be their own doctor, especially with a serious health condition like cancer, so many things can go wrong.
So I would say we should all continue to educate ourselves, especially in ways that decrease our anxiety. For many of us with Follicular Lymphoma, it's a long road. We are likely to deal with the disease for many, many years. And that's a good thing. But we also need to recognize when we need help, when we can't do things on our own, when we are not the experts, and when our doctors are the experts. So keep reading, keep learning, and keep taking control of your health, while recognizing that there is much that we don't know.
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