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

Abstract

Cutaneous lupus erythematosus (CLE) is a chronic dermatological autoimmune disease marked by photosensitive lesions that can lead to hyperpigmentation changes, scarring and hair loss. Health-related quality of life (HRQoL) in patients with CLE is severely impaired. Given the heterogeneous nature of CLE, health perceptions of patients can differ significantly from those of clinicians. It is important to use subjective measures, such as patient-reported outcomes (PROs), to capture HRQoL data in patients with CLE. We conducted a systematic review of published PRO instruments used in measuring HRQoL in patients with CLE. Also, we examined the disease burden on HRQoL in patients with CLE. To identify studies, PubMed/MEDLINE, Web of Science and CINAHL were searched using 'CLE/cutaneous lupus erythematosus' in combination with PRO-related keywords such as 'quality of life', 'self-report' and 'instrument'. English-language articles published between 2003 and 2014 were identified. A total of 482 citations were identified in the initial search. Eleven studies met our inclusion criteria, and five PRO instruments were found to be used: Skindex (versions 16 and 29), Dermatology Life Quality Index, 36-Item Short-Form Health Survey, and visual analogue scales for pain and pruritus. Patients with CLE reported having poor quality of life and experienced symptoms ranging from pain, pruritus and fatigue to photosensitivity. There is a limited number of studies examining PRO in patients with CLE. While our findings suggest that quality of life in patients with CLE is poor, further studies are needed to understand better the impact of CLE from patients' perspectives.

Cutaneous lupus erythematosus: quality of life and related factors in a cohort of 260 patients from A Coruña, Spain

“…The finding of diminished QoL for female vs. male patients is consistent with that in the literature, even if different health‐related QoL measurement instruments were used, and concordant with a similar finding for other cutaneous diseases (greater psychiatric comorbidities and a worse QoL in women than in men).…”

“…It is unsurprising that generalized disease has a greater impact on QoL than milder or localized forms, similarly to the case with other dermatological conditions. In other studies, QoL deterioration was demonstrated with a corresponding increase in CLE activity …”

“…Dear Editor , Dermatological disease has a significant impact on quality of life (QoL). However, information is scarce for cutaneous lupus erythematosus (CLE) in this regard …”

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

“…Currently, there are a limited number of PRO measures used in patients with CLE. Findings from a systematic review reported that the QoL instruments commonly used in patients with CLE are Dermatology Life Quality Index (DLQI), Skindex‐29, Short Form 36 (SF‐36) and visual analogue scales (VASs) . However, because patients with CLE were not involved in the development of these instruments, these measures may not capture all issues relevant to CLE.…”

Patient‐reported outcomes in patients with cutaneous lupus

“…To depict our current understanding of the QoL of patients with CLE, Ogunsanya et al . performed a comprehensive, systematic review of QoL studies in patients with CLE.…”