Researchers develop new tool to assess brain fog and cognitive symptoms in people with systemic lupus erythematosus

An international group of lupus researchers  have developed a new measurement tool to assess brain fog and cognitive symptoms in people with systemic lupus erythematosus (SLE). The Lupus Brain Fog Severity Scale (LBFSS) is the first valid and feasible patient-reported outcome measure (PROM) specifically designed for cognitive symptoms in SLE. People with lupus can have cognitive symptoms, like having a hard time thinking clearly or remembering things. This is also called “brain fog” or “lupus fog,” and it often comes and goes over time. In some people, lupus fog can be present for many years. Lupus fog is common with 70-80 percent of people with lupus experiencing lupus fog at some point during their lives.  

The LBFSS was developed through several international steps involving both healthcare professionals and people with lupus. In the first phase, 147 people with lupus from 39 countries described their cognitive symptoms, leading to 21 key themes. After consensus, these themes were reviewed for importance and 13 were kept and turned into questionnaire items for study participants to complete themselves. The draft version was validated based on feedback and then tested in a large group of 378 people with lupus from 36 countries. The final version showed strong reliability and validity through detailed statistical testing. Scores were higher in those reporting brain fog and strongly linked to daily functioning, symptom severity, and another cognitive questionnaire (Perceived Deficits), confirming the tool’s accuracy and usefulness.

Dr. Laurent Arnaud (Strasbourg Academic Hospitals, France) who led the group of international researchers said "The Lupus Brain Fog Severity Scale is the first questionnaire developed with and for those living with lupus to specifically measure the severity of brain fog. We hope it will help ensure that this often invisible but highly impactful symptom is better recognized, measured, and managed."

The LBFSS aims to capture how people with SLE experience brain fog and create a patient-centered tool to measure it. The tool complements, rather than replaces, objective cognitive testing. Developed with the input of people with lupus and clinical expertise, the tool shows good reliability and validity and captures the complexity of cognitive symptoms. Further testing is needed to confirm its use in care and research. Learn more about lupus and brain fog.

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