Many people living with lupus experience « brain fog » – problems with memory, concentration, clear thinking, or finding the right words. These symptoms can have a major impact on work, education, daily activities, and quality of life, yet they are often difficult to describe and are not always recognized during medical appointments.

To address this, an international team of researchers led by Pr Laurent ARNAUD, from Hôpitaux Universitaires de Strasbourg, France, worked together with people living with lupus to develop the Lupus Brain Fog Severity Scale (LBFSS), the first questionnaire specifically designed to measure cognitive symptoms in lupus.

Patients were involved at every stage of the project. They helped shape the research question, described their own experiences of brain fog, contributed to designing the questionnaire, and took part in testing it. Their input ensured that the questionnaire reflects what really matters to people living with lupus.

The LBFSS is not intended to replace specialist cognitive testing. Instead, it gives patients a structured way to describe their symptoms and helps healthcare professionals better understand how brain fog affects everyday life.

We hope this new tool will improve communication between patients and healthcare teams, increase recognition of cognitive symptoms in lupus, and support future research into treatments that could improve brain fog. Further studies will now examine how well the questionnaire tracks changes in symptoms over time and how it performs in different languages and healthcare settings.

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