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

  • Plantinga, Laura1, 2
  • Vandenberg, Ann1
  • Goldstein, Felicia1
  • Jones, Brian3
  • Johnson, Jeremy3
  • Bowling, Christopher Barrett4, 5
  • Dunlop-Thomas, Charmayne1
  • Lim, Sung Sam1, 2
  • Drenkard, Cristina1, 2
  • 1 Emory University School of Medicine, Atlanta, Georgia, USA , Atlanta
  • 2 Rollins School of Public Health, Emory University, Atlanta, GA, USA , Atlanta
  • 3 Georgia Institute of Technology, Atlanta, Georgia, USA , Atlanta
  • 4 Durham Veterans Affairs Medical Center, Durham, NC, USA , Durham
  • 5 Duke University, Durham, NC, USA , Durham
Published Article
Lupus Science & Medicine
Publication Date
Feb 24, 2021
DOI: 10.1136/lupus-2021-000476
PMID: 33627441
PMCID: PMC7908286
PubMed Central
  • 1506


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.

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