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

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.

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

BACKGROUND: Outcome measures of clinical trials in cutaneous lupus erythematosus (CLE) should reflect clinically meaningful improvement in disease activity, as measured by the Cutaneous Lupus Disease Area and Severity Index activity score (CLASI-A). OBJECTIVE: We aimed to define the degree of improvement in disease activity meaningful to a patient's quality of life. METHODS: The change in the CLASI-A in 126 patients needed to predict meaningful change in QoL, as defined by the Emotions and Symptoms subscales of the Skindex-29, was evaluated by linear regression models. RESULTS: In patients with an initial CLASI-A of ≥8, a 42.1% or ≥7-point and a 31.0% or ≥5-point decrease in CLASI-A predicts meaningful improvement in the Emotions and the Symptoms subscales, respectively. LIMITATIONS: This is a retrospective study of prospectively collected data at a single site. CONCLUSIONS: A CLASI-A score of ≥8 for trial entry allows for inclusion of patients with milder disease where CLASI-A improvement by ≥50% is clinically significant and meaningful.

'More extraordinary than mundane ' A phenomenological analysis of the experiences of individuals living with CLE and their taking care in the sun.

INTRODUCTION: CLE is a chronic inflammatory autoimmune condition of which photosensitivity is a major symptom. Individuals living with CLE are advised to practice photoprotection. Despite the benefits for disease control, many individuals living with CLE do not practice optimal photoprotection. The aim of this study was to gain a deep insight into the lived experiences of individuals with CLE and their photoprotective practices. METHODS: A qualitative study approach was conducted, using Hermeneutic phenomenology. Individuals living with CLE were recruited and interviewed. Rich pictures were used to enrich the interviews. Interviews were transcribed and analysed using Template Analysis. RESULTS: Analysis revealed four themes: 'Much more than just a photosensitive skin condition', 'The impact of sun on CLE and social dynamics', 'Drifting to the sun: personal transitions and social norms' and 'Taking care in the sun: easier said than done'. DISCUSSION AND CONCLUSION: This study provides a nuanced insight into the lived experiences of individuals with CLE and their photoprotective practices. Taking care in the sun is not a simplistic process. Beyond the biomedical model of illness, the social impact that CLE has on individuals has a dominant influence on their photoprotective behaviours. Such insights could help healthcare professionals tailor photoprotective advice.

The behavior, attitude, and knowledge towards photoprotection in patients with cutaneous/systemic lupus erythematosus: a comparative study with 526 patients and healthy controls.

OBJECTIVE: To evaluate the attitude, knowledge, and behavior towards the sun protection in systemic lupus erythematosus (SLE) patients with and without cutaneous involvement (CLE) compared to non-photosensitive controls and to determine influential factors for photoprotective practices in SLE patients. METHODS: A case-control study was performed. Patients and controls completed a self-reported questionnaire. For SLE patients, the presence of organ involvement, disease activity and laboratory data were acquired from their physical examination and medical records. RESULTS: A total of 263 SLE patients and 263 healthy controls were recruited. SLE patients had statistically significant better photoprotective practices than controls, i.e. exposure to sunlight <1 hour per day (76.1% vs. 48.3%, OR, 3.40; 95% CI, 2.34-4.93, p < 0.001), less outdoor activities (9.8% vs. 19.1%, OR, 0.44; 95% CI, 0.26-0.71, p = 0.003), wore long-sleeved shirts (57.0% vs. 32.7%, OR, 2.73; 95% CI, 1.92-3.89, p < 0.001) and hats (43.8% vs. 26.6%, OR 2.14; 95% CI, 1.49-3.09, p < 0.001). SLE with CLE subgroup had the highest percentage for regular practice in almost all sun protective means compared to SLE without CLE and controls. SLE with CLE patients had more diligent sunscreen application with higher percentage of consistent use (93.7% vs. 59.3%, OR, 11.66; 95% CI, 2.57-52.89, p = 0.001) and adequate application (58.1% vs. 24.6%, OR, 4.24; 95% CI, 1.93-9.30, p < 0.001) compared to those without CLE. Previous and current CLE were influential factors for adherence to photoprotective methods, while the extracutaneous involvement was not. The majority of SLE patients were well acquainted with the harm of sunlight to their diseases (91.6%). However, 40.1% of them did not perceive that sunlight could escalate their internal flare, which may have led to inferior photoprotective practices in patients with extracutaneous involvement. CONCLUSION: SLE patients had good awareness and practiced better photoprotection than controls. The cutaneous sign is a predictor for superior photoprotective behavior. Education regarding the harms of sunlight and the importance of appropriate photoprotection should be emphasized, especially in SLE cases without cutaneous involvement.

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

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 (ß = 0.13), pain (ß = 0.13), fatigue (ß = 0.24), body image (ß = 0.62), and side effects (ß = -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.

Willingness-to-pay stated preferences in cutaneous lupus erythematosus: a pilot study.

Cutaneous lupus erythematosus (CLE) is a chronic skin disease that significantly impacts quality of life (QOL). This study tested a novel method to measure QOL in CLE using willingness-to-pay (WTP) stated preferences, and aimed to determine which of nine domains of life are most affected by CLE. Twenty-one participants with CLE ranked the domains in order of impact on CLE-related QOL, and then stated how many United States dollars they would be willing to pay for a hypothetical cure for each domain. Eighty-one percent of participants were female; mean age was 42.4 years. Photosensitivity was ranked highest by 71.4% of respondents. Participants were willing to pay the most for a hypothetical cure for CLE specific to photosensitivity (median = $200,000), the least for a cure specific to self-care (median = $0). Participants were willing to pay a median of $1,000,000 for an overall cure for CLE. Limitations include a small sample size for this pilot study and that willingness-to-pay may be influenced by individual perception of money and socioeconomic factors. This study successfully pilot-tested a WTP method and ranking task for health-related QOL. Photosensitivity was the domain of life most affected by CLE, which is a domain unique to our novel tool.

Emotional Ability and Skin-restricted Lupus Evolution: A Longitudinal Study.

Impaired emotional abilities (higher scores of alexithymia and lower levels of emotional awareness) were found in patients with skin-restricted lupus, warranting examination of the relationship between these abilities and the evolution of skin-restricted lupus, using longitudinal data. A total of 75 consecutive outpatients with skin-restricted lupus were recruited and assessed by a dermatologist and a psychiatrist every 6 months over a period of 2.5 years. Alexithymia and emotional awareness were evaluated with the French versions of the Toronto Alexithymia Scale (TAS-20) and the Levels of Emotional Awareness Scale (LEAS). During follow-up, good stability of the LEAS scores was observed, whereas TAS-20 scores varied; those variations were positively associated both with lupus duration and current psychiatric and personality disorders, but not with lupus remission. Such findings regarding 2 complementary aspects of emotional functioning are of direct interest for the management of patients with skin-restricted lupus.

Chronic Cutaneous Lupus Erythematosus: Depression Burden and Associated Factors.

OBJECTIVES: Depression may occur in up to 30% of individuals with cutaneous lupus erythematosus (CLE), many of whom may also have systemic manifestations. Chronic cutaneous lupus erythematosus (CCLE) conditions are less likely to present systemic involvement than acute and subacute conditions but more often cause permanent scarring and dyspigmentation. However, little is known about depression in those who have CCLE confined to the skin (primary CCLE). As African Americans are at high risk for primary CCLE and depression, we aimed to investigate the prevalence of and explore the risk factors for depression in a population-based cohort of predominantly Black patients with primary CCLE. METHODS: This was a cross-sectional analysis of a cohort of individuals with a documented diagnosis of primary CCLE, established in metropolitan Atlanta, GA, USA. Participants were recruited from the Centers for Disease Control and Prevention (CDC) population-based Georgia Lupus Registry, multicenter dermatology clinics, community practices, and self-referrals. The Patient-Reported Outcomes Measurement Information System (PROMIS) was used to measure the primary outcome: depressive symptoms. Stand-alone questions were used to assess sociodemographics and healthcare utilization. Emotional, informational, and instrumental support were measured with PROMIS short forms, interpersonal processes of care with the IPC-29 survey, and skin-related quality of life with the Skindex-29+ tool. RESULTS: Of 106 patients, 92 (86.8%) were female, 91 (85.8%) were Black, 45 (42.9%) were unemployed or disabled, and 28 (26.4%) reported moderate to severe depressive symptoms. Depression severity was lower in patients who were aged ≥ 60 years, were married, or had graduated from college. Univariate analysis showed that being employed (odds ratio [OR] 0.24; 95% confidence interval [CI] 0.10-0.61), insured (OR 0.23; 95% CI 0.09-0.60), reporting higher instrumental, informational, and emotional support (OR 0.75; 95% CI 0.60-0.94; OR 0.62; 95% CI 0.49-0.78; and OR 0.48; 95% CI 0.35-0.65, respectively), visiting a primary care physician in the last year (OR 0.16; 95% CI 0.04-0.61) and reporting better physician-patient interactions (OR 0.56; 95% CI 0.37-0.87) were negatively associated with depression. Patient's perception of staff disrespect (OR 2.30; 95% CI 1.19-4.47) and worse skin-related quality of life (OR 1.04; 95% CI 1.02-1.06) rendered higher risk. In multivariate analysis, only perception of staff disrespect (OR 2.35; 95% CI 1.06-5.17) and lower emotional support (OR 0.48; 95% CI 0.35-0.66) remained associated with depression. CONCLUSION: Over one-quarter of a predominantly Black population-based cohort of individuals with primary CCLE reported moderate to severe depression, a rate three to five times higher than described previously in the general population from the same metropolitan Atlanta area. Our findings suggest that, while patient's perception of discrimination in the healthcare setting may play a role as a determinant of depression, social support may be protective. In addition to routine mental health screening and depression treatment, interventions directed at providing emotional support and improving office staff interpersonal interactions may contribute to reduce the risk of depression in patients with CCLE.

Validation and reliability of a disease-specific quality-of-life measure in patients with cutaneous lupus erythematosus.

BACKGROUND: Cutaneous lupus erythematosus (CLE) is a potentially disfiguring, chronic autoimmune disease with variable skin manifestations, negatively affecting patients' quality of life (QoL). Patient-reported outcome (PRO) measures assessing QoL in patients with CLE have been generic or developed without input from patients. OBJECTIVES: To demonstrate the reliability and validity of a disease-specific QoL measure for CLE - the cutaneous lupus erythematosus quality of life (CLEQoL). METHODS: One hundred and one patients with CLE were recruited, and each patient was asked to complete the CLEQoL. Internal consistency was used as a measure of reliability. Validity was measured in two ways - structural validity via exploratory factor analysis and convergent validity via Spearman correlations between CLEQoL and the Short Form 36 (SF-36), visual analogue scales and clinical variables. Patient demographic and disease characteristics were collected. RESULTS: The mean ± SD age of patients with CLE was 48 ± 13 years, with discoid lupus (n = 72; 71.3%) being the most predominant CLE subtype. Patients were mostly female (n = 88; 87·1%) and African American/Black (n = 59; 58·4%). Internal consistency ranged from 0·67 to 0·97. Five domains (functioning, emotions, symptoms, body image/cosmetic effects and photosensitivity) were extracted with a total explained variance of 71·1%. CLEQoL-related domains correlated with SF-36 domains (r range -0·39 to -0·65). CONCLUSIONS: The CLEQoL was found to be a valid and reliable PRO measure for assessing QoL in patients with CLE. Demonstrating that the CLEQoL has strong psychometric properties is an important step towards the development of a disease-specific PRO measure that future clinical trials can use.

Increased risk of depression in patients with cutaneous lupus erythematosus and systemic lupus erythematosus: a Danish nationwide cohort study.

BACKGROUND: There is a wide range in the reported prevalences of depression in patients with systemic lupus erythematosus (SLE), while the prevalence of depression in patients with cutaneous lupus erythematosus (CLE) remains severely understudied. OBJECTIVES: To examine whether patients with SLE or CLE have an increased risk of depression. METHODS: In this nationwide observational cohort study, we included patients aged ≥ 18 years with a first-time diagnosis of SLE or CLE between 2000 and 2015 identified in the Danish National Patient Register, which were matched with the general population in a ratio of 1 : 10. After linkage to national Danish health registers of primary and secondary care, analyses of risk for depression and antidepressant use were performed using Cox regression models adjusted for age, sex, socioeconomic status, smoking, alcohol abuse, prior depression and prior antidepressant use. RESULTS: A total of 3489 patients with lupus erythematosus were followed for 23 373 person-years. Compared with the general population, the adjusted hazard ratios (HRs) of depression were 2·07 [95% confidence interval (CI) 1·55-2·75] and 2·22 (95% CI 1·77-2·77) for patients with CLE and SLE, respectively; for hospitalization owing to depression at a department of psychiatry HRs were 2·63 (95% CI 0·80-8·67) and 3·52 (95% CI 1·53-8·11) for patients with CLE and SLE, respectively. The adjusted HRs for antidepressant use were 1·47 (95% CI 1·34-1·63) and 1·70 (95% CI 1·58-1·83) for patients with CLE and SLE, respectively. CONCLUSIONS: The risk of depression was significantly increased in patients with SLE and CLE. Awareness of an increased risk of depression in patients with SLE and CLE might be warranted.

Incremental health care services and expenditures associated with depression among individuals with cutaneous lupus erythematosus (CLE).

Objectives The objective of this paper is to describe the annual direct medical expenditures for cutaneous lupus erythematosus (CLE) patients, and to estimate the incremental health care expenditures and utilization associated with depression among adults with CLE, while controlling for covariates. Methods Using the 2014 Medical Expenditure Panel Survey (MEPS), we compared CLE patients with and without depression to determine differences in: (a) health care utilization-inpatient, outpatient, office-based and emergency room (ER) visits, and prescriptions filled; and (b) expenditures-total costs, inpatient, outpatient, office-based, ER, and prescription medication costs, and other costs using demography-adjusted and comorbidity-adjusted multivariate models (age, gender, race/ethnicity, marital status, education, perception of health status, poverty category, smoking status, and Charlson Comorbidity Index). Results The total direct medical expenditure associated with CLE is estimated at approximately $29.7 billion in 2014 US dollars. After adjusting for covariates, adults with CLE and depression had more hospital discharges (utilization ratio (UR) = 1.13, 95% confidence interval (CI) (1.00-1.28)), ER visits (UR = 1.17, 95% CI (1.09-1.37)), and prescribed medicines (UR = 2.15, 95% CI (1.51-3.05)) than those without depression. Adults with CLE and depression had significantly higher average annual total expenditure that those without depression ($19,854 vs. $9735). Conclusions High health care expenditures are significant for patients with CLE, especially among those with depression. Prescription drugs, inpatient visits, and ER visits contributed most to the total expenditures in CLE patients with depression. Early diagnosis and treatment of depression in CLE patients may reduce total health care expenditures and utilization in this population.

High Prevalence of Personality Disorders in Skin-restricted Lupus Patients.

Psychiatric and personality disorders have been extensively documented in patients with systemic lupus erythematosus (SLE). However, the prevalence of personality disorders in skin-restricted lupus (SRL) patients remains unknown. The aim of this study was to assess the prevalence of personality disorders in SRL outpatients and to examine the associated factors. We evaluated 60 SRL outpatients and 118 controls matched for sex, age and education level. On the basis of the Personality Diagnostic Questionnaire 4+, 38% of patients vs 20% of controls fulfilled the criteria for at least one personality disorder (OR 2.2 [95% CI 1.01-4.6], p = 0.048). Only one patient with a personality disorder had specialised mental health care. Late lupus onset and more frequent past treatments by thalidomide were associated factors. This study evidences a high prevalence of personality disorders in SRL patients and shows that most SRL patients with personality disorder do not receive specialised mental health care.

High prevalence of alcohol use disorders in patients with inflammatory skin diseases.

BACKGROUND: There is a known association between psoriasis and heavy alcohol consumption. The association between heavy alcohol consumption and other inflammatory skin diseases remains to be defined. OBJECTIVES: To examine the prevalence of heavy drinking using the Alcohol Use Disorders Identification Test (AUDIT) in patients with inflammatory skin disease. METHODS: We conducted an observational cross-sectional study in a single hospital outpatient department. We recruited 609 patients with either psoriasis, eczema, cutaneous lupus or other inflammatory disorders, and a reference population with skin lesions. Primary outcome was the proportion of patients in each group with an alcohol use disorder (AUD). RESULTS: The observed prevalence of AUD was 30·6% in patients with psoriasis, 33·3% in those with eczema, 12·3% in those with cutaneous lupus, 21·8% in those with other inflammatory disease and 14·3% in those with non-inflammatory disease. Odds ratios (OR) for AUD in patients in the inflammatory groups compared with those in the noninflammatory groups, adjusted for age and sex, were as follows: psoriasis 1·65 [95% confidence interval (CI) 0·86-3·17], eczema 2·00 (95% CI 1·03-3·85), lupus 1·03 (95% CI 0·39-2·71), other inflammatory disease 1·32 (95% CI 0·68-2·56). ORs were reduced if also adjusted for Dermatology Life Quality Index (DLQI). The prevalence of DLQI ≥ 11 was 31·1% for psoriasis, 43·7% for eczema, 17·5% for cutaneous lupus, 17·2% for other inflammatory disease and 2·8% for noninflammatory disease. CONCLUSIONS: Patients with eczema attending a hospital clinic have been shown to have high levels of AUD of a similar level to patients with psoriasis and higher than patients with noninflammatory skin diseases.

High prevalence of psychiatric disorders in patients with skin-restricted lupus: a case-control study.

BACKGROUND: Psychiatric disorders have been extensively documented in patients with systemic lupus erythematosus (SLE). However, the prevalence of psychiatric disorders in patients with skin-restricted lupus (SRL) remains unknown, although SRL is more common than SLE. OBJECTIVES: To assess current and lifetime prevalence of Axis I psychiatric disorders among outpatients with SRL and to examine the factors associated with psychiatric disorders among such patients. METHODS: A multicentre case-control study involving outpatients with SRL and controls matched for sex, age and education level. The Mini International Neuropsychiatric Interview was used for psychiatric evaluation. RESULTS: We evaluated 75 patients and 150 controls. Of these, 49% of patients vs. 13% of controls fulfilled the criteria for at least one current psychiatric disorder (P < 0·001). The following disorders were significantly more frequent among patients than controls: current and lifetime major depressive disorder (9% vs. 0%, P < 0·001 and 44% vs. 26%, P = 0·01), generalized anxiety disorder (23% vs. 3%, P < 0·001 and 35% vs. 19%, P = 0·03), panic disorder (7% vs. 0%, P = 0·004 and 21% vs. 3%, P < 0·001), current suicide risk (24% vs. 7%, P = 0·003), alcohol dependence (7% vs. 0%, P = 0·004) and lifetime agoraphobia (20% vs. 9%, P = 0·01). Lupus duration and lupus past treatment by thalidomide were significantly higher among patients with current psychiatric disorders. CONCLUSIONS: This study demonstrates a high prevalence of several psychiatric disorders (anxiety, depression, suicide risk, alcohol dependence) in patients with SRL.

Body image intervention to improve health outcomes in lupus: a pilot study.

PURPOSE: Systemic lupus erythematosus (SLE) can be disfiguring, disabling, and debilitating. In this proof-of-concept study, our goal was to determine the feasibility and effectiveness of a novel body image (BI) intervention in improving (1) BI and (2) health outcomes among women with cutaneous SLE. METHODS: A tailored weekly intervention for 10 weeks consisting of education, cognitive behavioral therapy, and cosmetic training was offered, along with usual fscare, to 10 SLE patients with inactive to mildly active disease and cutaneous involvement. For comparison, we followed up 5 patients with inactive to mildly active SLE and cutaneous involvement, receiving only usual care. Data on outcomes were obtained at baseline, immediately postintervention, and 18 and 24 weeks postintervention using the following tools: Body Image in Lupus Scale (BI), Multidimensional Body Self-Relations Questionnaire-Appearance Scale, State Trait Anxiety Index and Center for Epidemiological Studies Depression (psychological health), and LupusPRO (lupus health outcomes). Paired t tests (2-tailed) were done for between-groups comparisons. P ≤ 0.05 was considered significant. RESULTS: The mean ages of the intervention and control groups were 44.4 (SD, 8.7) and 43.2 (SD, 12.2) years, respectively. Scores on measures of BI, psychological well-being, and quality of life improved over time only in the intervention group; the benefits were retained over time. The observed effect size of the improvements in BI was large. CONCLUSIONS: Body image is modifiable in SLE. The results suggest that our intervention is feasible for SLE populations and that the SLE patients who participated improved on several measures of BI and overall well-being.