||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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