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

• Type of Material: Article
• Authors: Laura Plantinga, Emory University; Ann Vandenberg, Emory University; Felicia Goldstein, Emory University; Brian Jones, Georgia Institute of Technology; Jeremy Johnson, Georgia Institute of Technology; Christopher Bowling, Emory University; Charmayne Dunlop-Thomas, Emory University; Sung Lim, Emory University; Cristina Drenkard, Emory University
• Language: English
• Date: 2021-01-01
• Publisher: BMJ PUBLISHING GROUP
• Publication Version: Final Published Version
• Copyright Statement: © Author(s) (or their employer(s)) 2021.
• License: Creative Commons Attribution-NonCommercial 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1136/lupus-2021-000476
• Title of Journal or Parent Work: LUPUS SCIENCE & MEDICINE
• Volume: 8
• Issue: 1
• Grant/Funding Information: This work was supported by the US Army Medical Research Acquisition Activity (USAMRAA) through the Congressionally Directed Medical Research Programs (CDMRP) under Award No W81XWH1810619 (to LP). GOAL is supported by the Centers for Disease Control and Prevention (Grant No U01DP006488 to SSL and CD).
• Keywords: systemic lupus erythematosus; Rheumatology; outcome assessment; health care; Life Sciences & Biomedicine; health services research; Science & Technology
• Research Categories: Health Sciences, Medicine and Surgery; Health Sciences, Public Health; Health Sciences, Epidemiology

Abstract

Objective To determine whether and how cognitive assessment data should be included in a report for patients with SLE and their providers. Methods Leveraging 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. Results Feedback 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. Conclusion In 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.