title: 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.
authors.affiliation: Health Outcomes and Pharmacy Practice Division, College of Pharmacy, The University of Texas at Austin, Austin, TX, 78712, U.S.A.
authors.forename: M E
authors.identifier: http://orcid.org/0000-0002-4005-0446
authors.initials: ME
authors.lastname: Ogunsanya
authors.affiliation: Biogen, Cambridge, MA, 02142, U.S.A.
authors.forename: S J
authors.initials: SJ
authors.lastname: Kalb
authors.affiliation: College of Pharmacy, The University of Texas at Austin, Austin, TX, 78712, U.S.A.
authors.forename: A
authors.initials: A
authors.lastname: Kabaria
authors.affiliation: Biogen, Cambridge, MA, 02142, U.S.A.
authors.forename: S
authors.initials: S
authors.lastname: Chen
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D017281:Cost of Illness; D005260:Female; D006801:Humans; D008178:Lupus Erythematosus, Cutaneous / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D000071066:Patient Reported Outcome Measures; D011788:Quality of Life; D012720:Severity of Illness Index; D055815:Young Adult