Systemic lupus erythematosus (SLE) is a complex chronic disease associated with reduced cognitive functioning. Patients with SLE report cognitive symptoms, but cognitive assessment is not routine and little is known about day-to-day cognitive problems and their effect on disease management. As part of a pilot exploring the use of a cognitive functioning report prototype for shared decision making in clinical encounters (Approaches to Positive Patient-Centered Experiences of Aging in Lupus study-APPEAL), we investigated the relevance of cognitive assessments performed using the NIH Toolbox among patients with SLE.
We conducted four focus groups, two with SLE patients (n=18) and two with lupus providers (physicians and nurses; n=9) addressing cognitive issues and interest in communicating about cognition. We compared how NIH Toolbox cognitive domains (episodic memory; working memory; processing speed; attention and inhibitory control; cognitive flexibility) matched with patient- and provider-identified cognitive problems and needs.
Patients identified all NIH domains with rich experiential examples; providers identified fewer domains and offered less detail. An unanticipated additional domain was prospective memory, i.e., problems in remembering future actions. Use of technological aids (e.g., smart phone alerts) was mentioned by some patients, but not providers, and represent a potential opportunity for medical care. All participants expressed interest in discussing cognition in clinic.
Cognitive assessment using the NIH Cognitive Toolbox is relevant to this population, with the possible addition of a prospective memory assessment. Cognitive problems and indications of communication gaps suggest the appropriateness of more clinical communication about cognition in this population.