The Effects of Systemic Lupus–Related Cognitive Impairments on Activities of Daily Living and Life Role Participation: A Qualitative Framework Study

Michelle Barraclough, Aaron Howe, Ana Soberanis, Mahta Kakvan, Vijay Chattu, Ali Bani-Fatemi, Lisa Engel, Michelle Vitti, Emily Nalder, Yael Goverover, Monique Gignac, Dennisse Bonilla, Wils Nielsen, Nicole Anderson, Carmela Tartaglia, Behdin Nowrouzi-Kia, Zahi Touma

Research output: Contribution to journalArticlepeer-review

Abstract

Objective: Cognitive impairment (CI) in systemic lupus erythematosus (SLE) negatively impacts health-related quality of life leading to activity limitations. This qualitative study aimed to (1) explore the effect of SLE-related CI on activities of daily living and life role participation and (2) describe factors influencing activity restriction and life role participation. Methods: Semistructured, in-depth interviews of lived experience of CI in SLE were conducted with 24 participants with SLE. Sociodemographic and clinical data, and objective and subjective cognitive function, were collected to characterize participants. A qualitative thematic content analysis was undertaken guided by a framework analytical approach. Results: Participants reported problems in multiple cognitive domains, with multiple perceived causes. CI was felt to impact work, social, domestic, and family life, health, and independence. Five overarching themes were represented in the data: (1) characterization of SLE-reported CI, (2) perceived cause of CI, (3) perceived impact of CI on activities of daily living and life role participation, (4) adaptations for managing CI, and (5) influence of CI adaptations on activities of daily living and life role participation. Conclusion: This study provides a better understanding of the patient experience of CI in SLE, how it impacts their lives, and what coping strategies they employ. It highlights the long-term challenges those with CI in SLE undergo and provides evidence for the urgent need to implement multidisciplinary treatment options. When managing CI, it may be beneficial to evaluate and understand available psychosocial support resources to help identify and reinforce relevant adaptations to improve health-related quality of life.

Original languageEnglish (US)
Pages (from-to)21-30
Number of pages10
JournalACR Open Rheumatology
Volume6
Issue number1
DOIs
StatePublished - Jan 2024

ASJC Scopus subject areas

  • Rheumatology

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