Coping with systemic lupus erythematosus in patients’ words

Cornet, Alain; Mazzoni, Davide; Edwards, Angela; Monzani, Dario; Pravettoni, Gabriella; Andersen, Jeanette; Mosca, Marta

doi:10.1136/lupus-2022-000656

Cited by 4 publications

(7 citation statements)

References 29 publications

(26 reference statements)

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“…These adaptive approaches have been identified in previous qualitative studies of patients with SLE. 14,49 However, we did not find any discussion of patient-provider relationship as an adaptation to manage SLErelated CI as identified in previous qualitative research. The omission of patient-provider relationships as an adaptation may have strong clinical implications as we understand the effects of CI on HRQoL and life role participation.…”

Section: Discussioncontrasting

confidence: 58%

“…The strategies identified were problem‐focused (eg, memory techniques, energy conservation) or approach focused (eg, psychosocial support, medical interventions). These adaptive approaches have been identified in previous qualitative studies of patients with SLE 14,49 . However, we did not find any discussion of patient‐provider relationship as an adaptation to manage SLE‐related CI as identified in previous qualitative research.…”

Section: Discussionmentioning

confidence: 52%

“…Patients with SLE often make a choice between health and social well being to manage the demands of every day life. The exercising of choice can be greatly influenced by factors of temporality (eg, life stage at time of illness), cognitive function (eg, coping behaviors and mental flexibility), and the available interactions an individual has with their environment (eg, interpersonal relationships) 14,15 . Work disability in patients with SLE has also been associated with neurocognitive involvement, increased psychosocial demands, and decreased personal control 16 .…”

Section: Introductionmentioning

confidence: 99%

“…The exercising of choice can be greatly influenced by factors of temporality (eg, life stage at time of illness), cognitive function (eg, coping behaviors and mental flexibility), and the available interactions an individual has with their environment (eg, interpersonal relationships). 14 , 15 Work disability in patients with SLE has also been associated with neurocognitive involvement, increased psychosocial demands, and decreased personal control. 16 Therefore, understanding the impact of CI on psychosocial demands and personal control on activities of daily living and quality of life in SLE is paramount.…”

Section: Introductionmentioning

confidence: 99%

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

Barraclough,

Howe,

Soberanis

et al. 2023

ACR Open Rheumatology

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ObjectiveCognitive 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.MethodsSemistructured, 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.ResultsParticipants 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.ConclusionThis 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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Section: Discussioncontrasting

confidence: 58%

Section: Discussionmentioning

confidence: 52%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Barraclough,

Howe,

Soberanis

et al. 2023

ACR Open Rheumatology

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“…(43) Monaghan et al esteem in our sample (89.2%) could be explained by the long-lasting disease (a median of 15 years) and the patients' current mature age. These factors could have favored the development of coping mechanisms, as noted in the study of Cornet et al (49).…”

mentioning

confidence: 91%

Factors associated with health-related quality of life in women with systemic lupus erythematosus and permanent skin damage – a cross-sectional study

Oliveira,

Moura,

Dias

et al. 2023

Preprint

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Background: Skin manifestations occur in up to 85% of systemic lupus erythematosus (SLE) patients and can result in cutaneous atrophy and scarring, which can have a negative influence on health-related quality of life (HRQoL). Our study aims to describe HRQoL in SLE patients with permanent skin damage and explore its association with sociodemographic characteristics, self-esteem, and depression and anxiety symptoms. Methods: Cross-sectional study of women with SLE and permanent skin damage on the face and low systemic disease activity. HRQoL was assessed by the Systemic Lupus Erythematosus Quality of Life (SLEQOL) and Dermatology Life Quality Index (DLQI) questionnaires - higher scores indicating worse HRQoL. The Rosenberg self-esteem scale was used to assess self-esteem, and depression/anxiety symptoms were assessed by the Hospital Anxiety and Depression Scale. Results: Fifty-six consecutive patients were enrolled with a median (interquartile range - IQR) age of 47.0 (37.3 - 55.0) years and disease duration of 15.0 (8.0 - 24.8) years. The median (IQR) of the modified SLEDAI-2k was 2 (0-2) and that of the SLICC-DI was 2 (1-3). 42.8% were married, 71.4% had less than eight years of education, 71.4% were unemployed and 75.0% had a family income between 1 and 3 times the minimum wage. Higher scores in SLEQOL symptoms domain were associated with a low educational level. Higher DLQI and SLEQOL total scores were associated with low self-esteem and symptoms of depression and anxiety. SLEQOL domains, physical functioning and symptoms, were associated with low self-esteem, depression and anxiety symptoms, and the presence of scarring alopecia, whereas the activities domain was associated with low self-esteem and depression and anxiety symptoms. Mood domain was associated with low self-esteem, self-image, depression and anxiety symptoms, and treatment domain with symptoms of depression. Conclusion: We identified low HRQoL in patients with permanent skin damage and low systemic disease activity, whether in the physical, self-image, mood or psychological domains. Associated factors were low educational level, presence of scarring alopecia, presence of anxiety and depression symptoms, and low self-esteem. These results highlight the importance of strategies to minimize the burden of permanent skin damage on the HRQoL of women with SLE. Trial Registration: UTN code U1111-1210-2554.

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Exploring the Perspectives of Patients Living With Lupus: Retrospective Social Listening Study

Spies,

Andreu,

Hartung

et al. 2024

JMIR Form Res

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Background Systemic lupus erythematosus (SLE) is a chronic autoimmune inflammatory disease affecting various organs with a wide range of clinical manifestations. Cutaneous lupus erythematosus (CLE) can manifest as a feature of SLE or an independent skin ailment. Health-related quality of life (HRQoL) is frequently compromised in individuals living with lupus. Understanding patients’ perspectives when living with a disease is crucial for effectively meeting their unmet needs. Social listening is a promising new method that can provide insights into the experiences of patients living with their disease (lupus) and leverage these insights to inform drug development strategies for addressing their unmet needs. Objective The objective of this study is to explore the experience of patients living with SLE and CLE, including their disease and treatment experiences, HRQoL, and unmet needs, as discussed in web-based social media platforms such as blogs and forums. Methods A retrospective exploratory social listening study was conducted across 13 publicly available English-language social media platforms from October 2019 to January 2022. Data were processed using natural language processing and knowledge graph tagging technology to clean, format, anonymize, and annotate them algorithmically before feeding them to Pharos, a Semalytix proprietary data visualization and analysis platform, for further analysis. Pharos was used to generate descriptive data statistics, providing insights into the magnitude of individual patient experience variables, their differences in the magnitude of variables, and the associations between algorithmically tagged variables. Results A total of 45,554 posts from 3834 individuals who were algorithmically identified as patients with lupus were included in this study. Among them, 1925 (authoring 5636 posts) and 106 (authoring 243 posts) patients were identified as having SLE and CLE, respectively. Patients frequently mentioned various symptoms in relation to SLE and CLE including pain, fatigue, and rashes; pain and fatigue were identified as the main drivers of HRQoL impairment. The most affected aspects of HRQoL included “mobility,” “cognitive capabilities,” “recreation and leisure,” and “sleep and rest.” Existing pharmacological interventions poorly managed the most burdensome symptoms of lupus. Conversely, nonpharmacological treatments, such as exercise and meditation, were frequently associated with HRQoL improvement. Conclusions Patients with lupus reported a complex interplay of symptoms and HRQoL aspects that negatively influenced one another. This study demonstrates that social listening is an effective method to gather insights into patients’ experiences, preferences, and unmet needs, which can be considered during the drug development process to develop effective therapies and improve disease management.

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Coping with systemic lupus erythematosus in patients’ words

Cited by 4 publications

References 29 publications

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

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

Factors associated with health-related quality of life in women with systemic lupus erythematosus and permanent skin damage – a cross-sectional study

Exploring the Perspectives of Patients Living With Lupus: Retrospective Social Listening Study

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