Evaluating change in disease activity needed to reflect meaningful improvement in quality of life for clinical trials in cutaneous lupus erythematosus

2020 ◽  
Author(s):  
Srita Chakka ◽  
Rebecca L. Krain ◽  
Sarah Ahmed ◽  
Josef Symon S. Concha ◽  
Rui Feng ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Cutaneous Lupus Erythematosus ◽  
Meaningful Improvement ◽  
Cutaneous Lupus

scholarly journals Factors associated with quality of life in cutaneous lupus erythematosus using the Revised Wilson and Cleary Model

Lupus ◽  
2020 ◽  
Vol 29 (13) ◽  
pp. 1691-1703 ◽  
Author(s):  
Motolani E Ogunsanya ◽  
Sung Kyung Cho ◽  
Andrew Hudson ◽  
Benjamin F Chong
Keyword(s):  
Quality Of Life ◽  
Body Image ◽  
Side Effects ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Cutaneous Lupus Erythematosus ◽  
Factors Associated ◽  
The Impact ◽  
Cutaneous Lupus

Objectives The purpose of this study was to characterize the impact of cutaneous lupus erythematosus (CLE) in adults and identify the clinical and non-clinical factors associated with quality of life (QoL), using the Revised Wilson and Cleary Model. Methods 101 patients diagnosed with CLE were included in this cross-sectional study. QoL was measured with the Cutaneous Lupus Erythematosus Quality of Life (CLEQoL) scale and disease activity and damage with the Cutaneous Lupus Activity and Severity Index (CLASI). Patient demographics, clinical, and disease characteristics were also collected. Descriptive statistics were calculated, and multiple regression was employed to determine significant (p < 0.05) predictors of overall QoL. Data were analyzed using SPSS v24. Results The overall regression QoL model was significantly different from zero, (F = 24.96; df = 14, 76; p = <0.001). Disease activity (β = 0.13), pain (β = 0.13), fatigue (β = 0.24), body image (β = 0.62), and side effects (β = –0.13) were significant predictors of overall QoL while controlling for other predictor variables. Patients who experienced higher levels of disease activity, fatigue severity, pain levels, and greater degree of body dissatisfaction had significantly poorer QoL. Fewer side effects experienced from CLE medications were significantly associated with higher QoL. Conclusions Study findings support the considerable burden associated with CLE. Several modifiable variables such as pain, fatigue, body image, and disease activity were associated with QoL. Therefore, interventions that incorporate these variables may reduce negative impacts on QoL life and improve health outcomes in CLE patients. Furthermore, given the chronic and recurring nature of the condition, strategies focused on improving QoL are needed for this vulnerable population.

scholarly journals 424 Quality of life in patients with facial cutaneous lupus erythematosus

2020 ◽  
Vol 140 (7) ◽  
pp. S55
Author(s):  
J.S. Concha ◽  
D. Yan ◽  
A. Ravishankar ◽  
C. Bax ◽  
R. Borucki ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lupus Erythematosus ◽  
Cutaneous Lupus Erythematosus ◽  
Cutaneous Lupus

scholarly journals Validation of the Cutaneous Lupus Erythematosus Disease Area and Severity Index and pSkindex27 for use in childhood-onset systemic lupus erythematosus

2018 ◽  
Vol 5 (1) ◽  
pp. e000275
Author(s):  
Ashwaq AlE'ed ◽  
Pinar Ozge Avar Aydin ◽  
Nora Al Mutairi ◽  
Alhanouf AlSaleem ◽  
Hafize Emine Sonmez ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lupus Erythematosus ◽  
Cutaneous Lupus Erythematosus ◽  
Severity Index ◽  
Assessment Tools ◽  
Measurement Properties ◽  
Childhood Onset ◽  
Disease Area ◽  
Cutaneous Lupus

ObjectiveTo determine the measurement properties of the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) and the paediatric adaptation of the Skindex29 (pSkindex27) when used in childhood-onset SLE (cSLE).MethodsPatients with mucocutaneous involvement of cSLE were evaluated at the study entry and 6 months later. Besides the CLASI and pSkindex27, the Pediatric Quality of Life Inventory Generic Core scale (PedsQL-GC), its Rheumatology Module (PedsQL-RM), the SLE Disease Activity Index (SLEDAI) and the SLE Damage Index (SDI) were completed.ResultsThe CLASI and pSkindex27 had high internal consistency (both Cronbach α >0.82). Children were able to complete the pSkindex27, with self-report and caregiver proxy-reports showing excellent agreement (intraclass correlation coefficient=0.97). The CLASI Activity Score (CLASI-A) was strongly correlated with the mucocutaneous domain score of the SLEDAI as was the CLASI Damage Score (CLASI-D) with that of the SDI (both: Spearman correlation coefficients (rs) >0.68). pSkindex27 summary scores were moderately correlated with those of the PedsQL-GC and PedsQL-RM (all: rs>|0.51|), the CLASI-A and CLASI-D (both: rs> 0.64), respectively. Patients who experienced a >50% improvement of the CLASI-A between study visits had significantly higher PedsQL-GC and pSkindex27 scores than those without improvement of mucocutaneous features.ConclusionBoth CLASI and pSkindex27 are useful assessment tools in cSLE, active and chronic mucocutaneous lesions and their changes over time can be measured using the CLASI and the pSkindex27 can capture the impact of mucocutaneous involvement on patient health-related quality of life.

scholarly journals Quality of Life Differences Between Responders and Nonresponders in the Treatment of Cutaneous Lupus Erythematosus

2013 ◽  
Vol 149 (1) ◽  
pp. 104 ◽  
Author(s):  
Aileen Y. Chang ◽  
Elizabeth Ghazi ◽  
Joyce Okawa ◽  
Victoria P. Werth
Keyword(s):  
Quality Of Life ◽  
Lupus Erythematosus ◽  
Cutaneous Lupus Erythematosus ◽  
Cutaneous Lupus

scholarly journals Quality of life in cutaneous lupus erythematosus

2011 ◽  
Vol 64 (5) ◽  
pp. 849-858 ◽  
Author(s):  
Rachel Klein ◽  
Siamak Moghadam-Kia ◽  
Lynne Taylor ◽  
Christopher Coley ◽  
Joyce Okawa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lupus Erythematosus ◽  
Cutaneous Lupus Erythematosus ◽  
Cutaneous Lupus

scholarly journals Differences in quality of life in patients with cutaneous lupus erythematosus with varying income levels

Lupus ◽  
2021 ◽  
Vol 30 (6) ◽  
pp. 972-980
Author(s):  
Adrienne Joseph ◽  
Smriti Prasad ◽  
Linda S. Hynan ◽  
Mary-Margaret Chren ◽  
Benjamin Chong
Keyword(s):  
Quality Of Life ◽  
Social Isolation ◽  
Lupus Erythematosus ◽  
Cutaneous Lupus Erythematosus ◽  
Annual Income ◽  
Cross Sectional ◽  
Multivariable Analyses ◽  
The Impact ◽  
Cutaneous Lupus

Background Cutaneous lupus erythematosus (CLE) is an autoimmune photosensitive skin condition. The impact of income on quality of life has been incompletely characterized in CLE. Objectives We aimed to assess how annual income affects quality of life among CLE patients. Methods In this cross-sectional study of 238 patients with CLE, relationships between predictor variables including annual income and each SKINDEX-29 + 3 subdomain were identified using univariate and multivariable analyses. In addition, answers to individual SKINDEX-29 + 3 questions were compared across income groups. Clinical factors in patients making less than <10,000 USD (N = 85) with worse SKINDEX-29 + 3 scores were also identified by univariate and multivariable analyses. Results Patients making <10,000 USD annually experienced worse quality of life across multiple SKINDEX-29 + 3 subdomains (p < 0.05). These patients specifically experienced poorer quality of life relating to social isolation and self-consciousness. (p < 0.001). Among those making <10,000 USD, predictors for worse quality of life included females, smokers, and those with higher skin disease activity were identified (p < 0.05). Limitations: This is a single center study. Income was also self-reported and could not be verified. Conclusions Lower income is related to poorer quality of life in patients with CLE. Specifically, patients experience limitations regarding social isolation and self-consciousness.

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