‘Knowing what you don’t know’: Education, communication can curb ANA over-testing
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Although testing for antinuclear antibodies is widely viewed as an effective screening tool for lupus and other autoimmune diseases, many rheumatologists fear that excessive ANA testing does more harm than good.
And yet the practice is still often deployed by well-meaning physicians — mostly non-rheumatologists — who may not be aware of the specific heterogenetic nature of lupus, leading to false positives that trigger undue stress and anxiety for the patient.
According to Michael Putman, MD, MSci, of the Medical College of Wisconsin, the over-ordering of ANA tests often stems from a practice — which is all too pervasive, in his view — referred to as diagnoses of exclusion.
“There's this belief in medicine that we’re all little detectives solving crimes,” Putman told Healio in an interview. “You generate a list of suspects you need to exclude, because that's how detectives work. They identify suspects, run down leads, exclude people who seem innocent, and solve the case through a process of deductive reasoning. But medicine and diagnostic testing do not work that way.”
Instead, he said that the push toward over-testing to exclude a diagnosis can have a harmful impact on the relationship between a patient and the health care system.
“Many people who are truly suffering from non-autoimmune diseases get tested and have a positive ANA,” Putman added. “They assume this means they have lupus, but then a rheumatologist tells them they do not. This results in them feeling alienated from the health care system, because it feels like physicians are speaking out of both sides of their mouths. This results in less trust. You think that testing for an ANA is going to make your life easier because you'll have more information, but often it makes your life much, much more complex.”
Janet Pope, MD, of the University of Western Ontario, concurred with Putman, stating it can be downright frightening for a patient to receive a positive ANA test result despite being otherwise healthy.
“I think it can be really scary, especially if they know of lupus from reading about it on Google, or from a friend or relative that they know who hasn't done well with lupus,” Pope told Healio. “They come in very frightened. It's not a benign thing to be called a positive test, where you misinterpret that to mean that you have a label that is a chronic disease.”
According to Shivani Garg, MD, MS, of the University of Wisconsin School of Medicine and Public Health, the psychological impact of a positive ANA test can trigger anxiety, impact mood and cause depression in healthy patients.
“[Lupus] is a chronic disease and a diagnosis that they have to carry,” Garg told Healio. “Diagnosing a young patient, otherwise healthy, based on just a test, without putting the symptoms and other things in perspective, could cause a lot of patient anxiety. Knowing that they could have a certain chronic disease, that could cause a lot of anxiety, affect their mood, and cause some depression and other scenarios.”
Meanwhile, another major risk of overemphasizing the potential for lupus following a positive ANA test is that doctors could completely miss other conditions and diseases.
“[Patients] may very well not be treated for what actually is going on with their symptoms because they get so pigeonholed in thinking this has to be an autoimmune disease,” Jennifer L. Medlin, MD, of the University of Nebraska Medical Center, told Healio. “And I think there's a lot of risk both for the patient’s psyche, long-term, and also that we’re missing something that actually is causing those symptoms and not getting treatment.”
‘Knowing what you don’t know’
To prevent the over-ordering of ANA tests — and the anxieties and harm that may follow — the importance of a high pretest probability prior to the test cannot be overstated, according to experts.
“The broader perspective is that you should only order a test when the pre-test probability of a disease is high enough that the test will meaningfully affect the likelihood that you would diagnose them with something,” Putman said. “If you plan to ignore a positive result, you should not send the test.
“There are three times that I tell trainees to consider sending an ANA,” he added. “The first one is a patient with polyarthritis and another disease manifestation that could plausibly be related to lupus. The second setting is unexplained serosal inflammation, such as pericarditis and pleuritis together. The third is a patient with multiple disconnected systems that would plausibly be unified by the immune system, such as a malar rash and proteinuria.”
According to Garg, the nonspecific nature of many lupus symptoms can often lead doctors who may not be rheumatology specialists to order ANA tests when they are not necessary.
“Sometimes when symptoms are nonspecific and do not make sense in the present clinical presentation, such as fatigue or diffuse body aches, it could trigger the thought process that this patient could have an autoimmune disease and that could lead to sending out such tests,” she said. “But the yield of such tests might not be great because, as we know, an ANA is a screening test, so even if it is positive, it does not always mean that patients have lupus. Patients need additional testing and evaluation by a rheumatologist.”
Garg emphasized the necessity of specific markers for potential lupus or another autoimmune disease.
“Usually, we suggest getting ANA tests done when there are specific symptoms that are concerning for lupus or autoimmune diseases,” she added. “Photosensitive rash or a butterfly rash, or other specific skin manifestations of lupus, or joints that are swollen or stiff, or any other findings that are concerning on regular routine bloodwork, like low cell counts, or some abnormal kidney function tests or protein in urine — things like that.”
Meanwhile, Pope stated that a keen sense of self-awareness — or “knowing what you don’t know” — is imperative in the ANA testing process.
“I think the best thing any of us can do is order tests in the realm of what we’re aware of,” Pope said. “And if we're not aware, in my opinion, someone else's brainpower is worth more than ordering a bunch of tests that go nowhere, or that I don't know how to interpret.”
Patient education is key
Given the psychological duress that patients are subjected to when faced with the possibility of a chronic disease label, Putman stressed the importance of patient education in the ANA testing process.
“Patient education is always the most important thing,” he said. “‘Thinking out loud’ and making sure patients understand why you are making the choices you are making is critical. You can have the best, most perfect plan on Earth, but if your patient doesn't believe in it and doesn't do it, then it's worthless.”
Putman added that it can be helpful to guide patients through the research they perform on their own — either via the internet or through patient groups — so that they can “take ownership” of their treatment process.
“I'm always trying to encourage my patients to take ownership of their symptoms and ownership of their disease,” he said. “Doing their own research is part of that. As a physician, you have to be ready to provide context for information patients receive from online resources or patient networks. That can be a challenge sometimes, but I think it's something that is just part of the job. You have to be ready to talk about those things.”
Similarly, Garg said that a physician’s guidance can alleviate some of the anxieties patients feel when they inevitably turn to the internet for information following an in-office visit.
“Patient education can be tricky,” Garg said. “Everybody has access to Google or the internet, and they can read a ton of things before coming to the doctor, so we just need to give them better resources to go to so that they read more validated information, rather than just Googling everything or going to the internet.”
Furthermore, Medlin stated that counseling with a patient can be an effective tool prior to an ANA test.
“I warn people ahead of time that the ANA is not a diagnostic test by itself,” she said. “You’ve got to also look at other specific antibodies if it's positive, and we have to interpret it in context of the titer and your symptoms, and if those match. And so, I tend to do a lot of pre-counseling before I personally check them because I know that that really helps with anxiety, and helps people not automatically start Googling things and going down the wrong pathway, all while getting more anxious about what they may have. I find that that's been really helpful.”
Calling a rheumatologist: ‘Always a good idea’
Much like patient education, cross-specialty education — and maintaining an open line of communication between rheumatologists and non-rheumatologists — are also essential prior to ANA testing.
According to Pope, there are many factors that can make it difficult for a non-rheumatologist to identify and diagnose lupus, highlighting the importance of a direct line of communication prior to sending for an ANA test.
“A lot of lupus patients don’t look the same,” Pope said. “They have different kinds of rashes, different symptomatology, different antibodies, etc. So, I think it's more difficult for the primary care physician or nurse practitioner to not cave and just [send for an ANA test] while saying, ‘Well, I tried to do it because I'm trying to be patient centered. I really don’t think you have it, but let's take a look.’ However, our health care system can't afford false positives that don't really need to be done, because it's bad care.
“We can't expect the family doctors to be excellent at everything,” she added. “I don't fault them for not knowing what we haven’t taught them. That’s my blame, not their problem.”
Medlin echoed Pope’s remarks.
“[Non-rheumatologists] are not trying to cause any harm to the patient or anything like that,” Medlin said. “I think a lot of clinicians who are not rheumatologists are just not trained necessarily to know what specific features we are looking for that should trigger an ANA evaluation vs. when these symptoms are not specific enough to warrant it, given that there's such a high prevalence of false positives in the population.
“I try to teach our trainees that come through — the residents, the PA students, the med students, the fellows — when it is appropriate to check an ANA,” she added. “If there’s any doubt about whether they should be sending an ANA, I’d honestly rather them just send the patient to us first before checking it, and then we can screen them and see if that’s an appropriate test to order.”
According to Garg, educating other specialists and subspecialists, while maintaining communication between them and rheumatology, can reduce anxiety as well as delayed diagnoses in times of uncertainty.
“Discussion with a rheumatologist is always a good idea,” Garg said. “When in doubt, even before sending the test, just a warm call could be helpful, and it might also help the triage of certain presentations, like if a patient is presenting with fatigue but also has abnormal kidney function tests, or abnormal urine tests. Typically, that patient needs to be seen ASAP because they could have kidney involvement. Just by talking with a rheumatologist, such red flags could be identified earlier, and they could reduce the delays in diagnosis.
“Primary care, family medicine — all those first-contact providers — just [need] more education on what specific symptoms to look for, what are the risk factors, when to send an ANA and how to interpret an ANA,” she added. “That will help reduce some of the over-ordering. Then, when we order more, it can reduce some of the patient anxiety that comes with just a positive test.”
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