TY - JOUR
T1 - The Effects of Systemic Lupus–Related Cognitive Impairments on Activities of Daily Living and Life Role Participation
T2 - A Qualitative Framework Study
AU - Barraclough, Michelle
AU - Howe, Aaron
AU - Soberanis, Ana
AU - Kakvan, Mahta
AU - Chattu, Vijay
AU - Bani-Fatemi, Ali
AU - Engel, Lisa
AU - Vitti, Michelle
AU - Nalder, Emily
AU - Goverover, Yael
AU - Gignac, Monique
AU - Bonilla, Dennisse
AU - Nielsen, Wils
AU - Anderson, Nicole
AU - Tartaglia, Carmela
AU - Nowrouzi-Kia, Behdin
AU - Touma, Zahi
N1 - Publisher Copyright:
© 2023 The Authors. ACR Open Rheumatology published by Wiley Periodicals LLC on behalf of American College of Rheumatology.
PY - 2024/1
Y1 - 2024/1
N2 - 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.
AB - 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.
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U2 - 10.1002/acr2.11624
DO - 10.1002/acr2.11624
M3 - Article
AN - SCOPUS:85176908250
SN - 2578-5745
VL - 6
SP - 21
EP - 30
JO - ACR Open Rheumatology
JF - ACR Open Rheumatology
IS - 1
ER -