Patient and provider perceptions of a novel cognitive functioning report for patients with systemic lupus erythematosus: a qualitative study

Abstract

ObjectiveTo determine whether and how cognitive assessment data should be included in a report for patients with SLE and their providers.MethodsLeveraging experiences from prior studies, we created a cognitive report that included a hypothetical patient’s results on tests of multiple domains based on the NIH Toolbox Fluid Cognition Battery. In focus groups that comprised patients with SLE (two groups) and their providers (two groups), feedback was sought on the presentation of results as well as the potential value of the report in the clinical setting.ResultsFeedback regarding the presentation of the report was generally positive. Both patients with SLE and their providers liked its simple graphics and use of a colour-gradated scale to indicate performance. However, both groups stressed the importance of using non-stigmatising language in describing results. Several potential purposes of the report, including distinguishing cognitive versus other issues, explaining cognitive challenges, improving patient–provider interactions, guiding decision-making, improving functioning or preventing impairment and tracking cognitive function over time, were noted by the participants. Potential barriers, such as inadequate clinical staffing or time and lack of potential treatments for identified issues, were also discussed.ConclusionIn this exploratory study, we found that both patients with SLE and their providers were receptive to the idea of a patient-friendly report of cognitive test results. This study provides important information to guide future pragmatic research to optimise the delivery of cognitive information to patients with SLE.

Cognitive Problems and Their Clinical Assessment in Systemic Lupus Erythematosus: Contrasting Patient and Provider Views

“…Following the APPEAL pilot study that characterized the cognitive function of a cohort of patients with SLE (7), a prototype cognitive assessment report was drafted for discussion as a proposed shared decision‐making tool (25). This one‐page “cognitive test results” report represented each of 5 cognitive domains for a hypothetical test patient with a description, a situational graphic (e.g., trying to remember where one put one's keys for the domain of episodic memory), and scoring.…”

Comprehension, Utility, and Acceptability of a Multidomain Physical Functioning Report for Systemic Lupus Erythematosus Patients and Their Providers

“…Finally, while our report covers multiple domains of functioning, it is not a complete picture of functioning, which would also include cognitive functioning. However, we are only in the early phases of developing such a report (25,28) and have not yet enabled the generation of reports directly from the cognitive data.…”

“…While comprehension of the measures is likely to be higher among care providers, certain numeric aspects of the report will likely be novel and require some training to increase provider comfort with explaining the report to patients; it is also possible that the report will be less well‐accepted by providers than by patients, or that some or all aspects of the report will not be considered useful or intervenable enough to overcome the limitations (primarily, lack of time), as reported in our dialysis study (14). In our recent qualitative study of a hypothetical cognitive report, providers noted that functioning reports may be difficult to address for sole SLE providers without the resources available at a large practice or academic setting (28). Future studies to assess the effectiveness of the report should include provider feedback and consider providing mechanisms of multidisciplinary team support.…”