Evaluation of the quality of life of lupus erythematosus patients with cutaneous lesions in Japan

Abstract

The quality of life (QOL) of lupus erythematosus (LE) patients with skin manifestations is impaired, but little is known about Japanese patients. We assessed whether the skin symptoms in LE are associated with the QOL using the Japanese versions of the Skindex-29 and Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI). In all, 54 LE patients with cutaneous lesions completed the Japanese version of the Skindex-29, and physicians assessed the severity of their eruptions using the CLASI before and after treatment. The QOL of the LE patients was better after the therapeutic intervention using the Skindex-29 questionnaire. We tested several factors for an independent association with the QOL. A significant risk factor for a poor QOL was a female gender in "Functioning" before treatment. In addition, a poor QOL tended to be correlated with a female gender in "Emotions" and older current age in "Symptoms" before treatment, and with a longer duration of SLE in "Functioning" after treatment. In the CLASI analysis, skin manifestation activity in the acute phase correlated with a poor emotional and functional QOL rather than a symptomatic QOL. To the best of our knowledge, this is the first report evaluating the QOL of Japanese LE patients, despite the small cohort.

A systematic review of patient‐reported outcomes in patients with cutaneous lupus erythematosus

“…hypertension, diabetes, recent myocardial infarction) . Disease activity, pain, photosensitivity, female sex, low socioeconomic status and African American ethnicity were factors associated with poor HRQoL in patients with CLE . Further, as patients with CLE progress from acute lesions to chronic lesions, their HRQoL also decreases …”

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

“…According to the exploratory factor analysis, the CLEQoL was found to have five domains which are two more domains than the Skindex has. The first three factors – functioning (12 items), emotions (10 items) and symptoms (seven items) – were in accordance with the Skindex . The additional two domains correspond to body image/cosmetic issues (four items) and photosensitivity (three items), which are CLE‐specific attributes that have been reported to be important to patients in qualitative and cross‐sectional studies .…”

“…While the pathophysiology of CLE is not fully understood, it is hypothesized that genetic, hormonal, immunological abnormalities and environmental factors influence disease development and progression . Common symptoms often range from fatigue, pain and alopecia to photosensitivity, all of which affect functional and emotional aspects of quality of life (QoL) . Owing to the subjective nature of CLE symptoms, it is beneficial to use patient‐reported outcomes (PROs) correctly to assess disease progress and development.…”

“…3,4 Common symptoms often range from fatigue, pain and alopecia to photosensitivity, all of which affect functional and emotional aspects of quality of life (QoL). [5][6][7] Owing to the subjective nature of CLE symptoms, it is beneficial to use patient-reported outcomes (PROs) correctly to assess disease progress and development.…”

“…6,[10][11][12][13] However, because patients with CLE were not involved in the development of these instruments, 11,12 these measures may not capture all issues relevant to CLE. For example, the Skindex-29, 12 a commonly used QoL questionnaire for skin diseases, [1][2][3]7,[14][15][16] lacks questions addressing concerns unique to patients with CLE such as avoidance of sun exposure. As a result, the 'cutaneous lupus erythematosus quality of life' (CLE-QoL) was developed to include additional CLE-specific domains like body image and photosensitivity, thanks to input from patients with CLE via focus groups, 17 VitiQol, 18 and the Skindex-29+3, which contains three additional CLE-specific questions on photosensitivity and alopecia.…”