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

Abstract

Summary 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.

News and Notices

“…In this article by Ogunsanya et al 1 , the following information should have been included in relation to Figure 1-The final cutaneous lupus erythematosus-specific quality of life (CLEQoL) measure:…”

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

“…Several factors impact quality of life (QoL) in CLE patients, especially on physical and mental health domains. 2,5–8,10–16 Increasing pain, fatigue, and skin disease activity, female gender, younger age, current smoking status, low income, low education level, presence of systemic lupus erythematosus (SLE), and photosensitivity are factors associated with poor QoL. 2,6,16,17 The literature reports conflicting results on the relationship between ethnicity and QoL.…”

“…Furthermore, the studies examining QoL in CLE patients did not make use of CLE-specific validated instruments in assessing QoL. 2,5,6,8,10–15 As a result, the cutaneous lupus erythematosus quality of life (CLEQoL) scale was developed to include additional, salient domains relevant to the experiences of CLE patients, such as body image and photosensitivity, to the SKINDEX-29 questionnaire, which is a generic skin disease QoL questionnaire. 13,18 The CLEQoL is a 36-item QoL measure for CLE, consisting of five domains: symptoms, emotions, functioning, body image/cosmetic issues, and photosensitivity.…”

“…The impact of different clinical and non-clinical factors on QoL in patients with skin diseases has mostly involved univariate and multivariate approaches without a theoretical framework. 2,5–8,10–16 The limitation of this approach is the inability to order the complex phenomenon of the multidimensional impact of health on QoL as well as show how several health measures can be combined to allow for a broad assessment of QoL. 23 In addition, the use of a theoretical framework provides a basis to test and develop future interventions.…”

Understanding cutaneous lupus erythematosus: a step forward

“…In this issue of the BJD , Ogunsanya et al . present the results of the long process to develop a specific quality of life (QoL) instrument for patients with cutaneous lupus erythematosus (CLE) . Understanding QoL impact is essential to understanding skin diseases and their importance for our patients.…”