Lupus patients and physicians seek more insight into cognitive problems


Researchers are exploring the feasibility of cognitive assessments in systemic lupus erythematosus (SLE), potentially filling a gap that has left clinicians and patients in the dark about disease-related declines in thinking abilities.

In a new study published in Arthritis Care & Research, researchers reported that participants in focus groups of patients, physicians, and nurses all said they support discussion of cognition in the clinic. “Patients are interested in learning about cognitive function. They want to know how they’re doing and be tracked over time, and they’re interested in knowing what kinds of cognitive supports are available from their provider,” Laura C. Plantinga, PhD, an epidemiologist at Emory University, Atlanta, and a coauthor of the new study, said in an interview. “Physicians are definitely interested in this, too, but they’re a little worried about the time and support available, especially solo providers.”

Dr. Laura C. Plantinga

Dr. Zahi Touma

Scope of cognitive problems

SLE is linked to cognitive dysfunction, but it’s not clear how many patients are affected. There’s a wide range of estimates because “there is really no 100% agreement on how you define and measure cognitive impairment in this population,” said University of Toronto rheumatologist Zahi Touma, MD, PhD, , who coauthored a 2018 systematic review and meta-analysis of existing research into this topic. He estimates that at least 40% of patients with lupus have cognitive problems.

A common cognitive complaint in SLE is “lupus fog.” The term “is almost universally known to people with lupus,” according to the Lupus Foundation of America. “The phrase reflects the difficulty that you may have in completing once-familiar tasks such as remembering names and dates, keeping appointments, balancing your checkbook, or processing your thoughts.”

In an interview, Dr. Touma said patients “have difficulty remembering words, and they say: ‘I was walking, and I totally forgot where I should go.’ You often hear about this in the clinic.”

The phrase reflects the difficulty that you may have in completing once-familiar tasks such as remembering names and dates, keeping appointments, balancing your checkbook, or processing your thoughts.

Like other symptoms of the disorder, cognitive difficulties vary over time in lupus, study coauthor Dr. Plantinga said. In some cases, she said, patients will develop workarounds and perhaps not even notice they’re failing to think clearly.

In the new study, the researchers interviewed two focus groups of patients with SLE (n = 18) and found that the participants were well aware of their cognitive deficiencies. “They were definitely noticing it,” Dr. Plantinga said. “They feel foggy, they can’t get things done, they have trouble at work.” According to her, several patients reported that they use smartphones to set reminders for themselves or to give them driving directions so they don’t forget turn-offs in familiar routes.

However, she said, “I’m not sure they would have brought it up if we hadn’t asked about it.”

Finding the right assessments

That’s where cognitive assessments come in. Several tools are available, but “clinical cognitive assessment remains underused in lupus care,” the authors of the new study wrote. The American College of Rheumatology developed an hour-long battery of neuropsychological tests, but it must be administered by specially trained professionals, and it’s rarely used outside the research setting.

“Moving neuropsychological assessment of SLE patients into clinical practice requires not only identifying a battery that is feasible to administer but also ensuring that assessment itself is acceptable and valuable to both patients and providers,” the researchers wrote. “To date, little work has been done in the area of provider and patient preferences for clinical cognitive assessment and reporting.”

In a previous study, the researchers administered National Institutes of Health Toolbox Cognition battery subtests to 60 patients with SLE. For the new study, researchers led by Emory’s Ann E. Vandenberg, PhD, developed a mock “cognitive test results” report that listed scores in five cognitive domains and an overall “summary” domain. Then they showed the report to members of focus groups including the 18 patients and 9 physicians and nurses.

Everyone in the focus groups “voiced interest in having more information about cognition in the form of the test report,” the study authors reported.

One goal of the study’s focus-group discussions was to determine if patients even want to talk about the topic of cognition, Dr. Plantinga said. “It’s a sensitive thing, and it’s not something they necessarily want to know about if they’re not noticing symptoms.”

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But patients did want to talk about their thinking problems, and some offered examples of how they failed to think clearly:

“I forget what I’m going to say, or I’m telling somebody something and I forgot half the story.”

“I gave up on owning a dog because I just could not do all the things I had to do to take care of the dog.”

“I definitely cannot drive and talk at the same time anymore.”

“It affects my career. Like in academic-type work, you can't go around like, blubbering words that don’t even make sense.”

Further research is needed to determine how and where cognitive testing would take place, whose role it would be to administer the tests and cognitive counseling, and what additional training and resources might be needed.
Some patients didn’t feel their providers addressed cognition. A nurse said cognition only comes up in clinic if a patient mentions it, and a physician said patients often mention the topic.

On another front, the researchers reported that dysfunction in “prospective memory” – remembering a planned action – affects patients but is not measured by the NIH Toolbox. “We think prospective memory is particularly relevant to chronic disease self-management tasks, such as getting to medical appointments and taking medication,” they wrote.

Better assessment in patients with SLE could have “the potential benefit of enhancing patient-provider discussion and better shared decision making, including lifestyle accommodations and advance care planning, as well as more individually tailored medical care,” the authors wrote. But they cautioned that rheumatologists “may find themselves in the difficult position of being asked for specific advice or interventions when no effective interventions can be identified.”

Dr. Touma acknowledged that it’s difficult to treat cognitive impairment. Some factors could that affect cognition in lupus can be treated, such as depression or sleep dysfunction. But “we don’t have good treatments,” he said, if dysfunction is directly related to lupus.

Other researchers have tried to measure the value of other cognitive assessment tools in SLE. A 2017 study coauthored by Dr. Touma reported that the Montreal Cognitive Assessment may be a useful tool, and a 2018 study by a different team agreed. The test, however, cannot be self-administered.

In 2019, Dr. Touma coauthored a study of 211 patients with SLE that supported the use of a computerized, self-administered, 40-minute assessment known as the Automated Neuropsychological Assessment Metrics test. “Based on the study, we found that there is really good evidence of the validity,” Dr. Touma said. “It’s a good choice. We’re doing more work on the test’s utility and interpretation of results.”

The test’s cost is much lower than the ACR assessment, and it’s easier to use, he said. According to him, the test can be easily downloaded. He added that clinicians should make sure to supplement the assessment results by asking patients about what they’re experiencing on the cognitive front.

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What’s next?

“Further research is needed to determine how and where cognitive testing would take place, whose role it would be to administer the tests and cognitive counseling, and what additional training and resources might be needed,” the authors of the new study wrote.

The team behind the study is hoping to find a way to use technology – perhaps an app – to assess patients and deliver the findings. According to Dr. Plantinga, questions to explore include: “What happens when patients use it? Do they get referred? Are they more satisfied with their care?”

For now, she said, the study findings suggest cognition deserves more attention in the clinic. “Clinicians could start probing patients about cognitive function and thinking about how screening might work in their practice since we were able to show patients in our study were interested in knowing about their cognition,” she said. “But it's premature to provide recommendations on which assessments to use or how it is best managed. This is something we and others could address in future studies.”

The Department of Defense funded the new study. Dr. Plantinga and Dr. Touma reported no relevant disclosures.