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Prospective Enrollment of 114 Patients

Siamak Moghadam-Kia, MD; Katherine Chilek, DO; Elizabeth Gaines, MD; Melissa Costner, MD; Mathew E. Rose, MB; Joyce Okawa, RN; Victoria P. Werth, MD

Arch Dermatol. 2009;145(3):255-260.

Objectives  To assess disease severity in subsets of patients with cutaneous lupus erythematosus (CLE) by using outcome and quality-of-life measures, and to determine treatment responsiveness by establishing a Web-based database of patients with skin manifestations of lupus.

Design  Prospective, cross-sectional study.

Setting  University hospital cutaneous autoimmunity outpatient clinic.

Patients  One hundred fourteen patients who presented from January 15, 2007, to November 8, 2007, and met the criteria for having CLE or lupus-nonspecific skin disease.

Main Outcome Measures  Scores on the CLE Disease Activity and Severity Index and the modified Skindex-29 (a quality-of-life measure) completed at each visit.

Results  Seven patients (6.1%) presented with acute CLE, 21 (18.4%) with subacute CLE, 77 (67.5%) with chronic CLE, 7 (6.1%) with systemic lupus erythematosus and LE-nonspecific skin lesions, and 1 (0.9%) with LE-nonspecific skin disease only. The mean baseline CLE Disease Activity and Severity Index activity/damage scores in patients with acute, subacute, and chronic CLE were 6.4/5.1, 11.1/1.6, and 7.5/10.2, respectively. The mean baseline modified Skindex-29 scores were 76.3, 79.4, and 82.7, respectively (P = .80). The disease in 11 of the patients (9.6%) was considered refractory to conventional therapies. Significantly more patients in the refractory group than the nonrefractory group were current smokers (P = .006).

Conclusion  This Web-based database should allow collection of data related to disease activity, quality of life, and response to therapy at multiple centers.

Author Affiliations: Department of Dermatology, University of Pennsylvania, Philadelphia (Drs Moghadam-Kia, Chilek, Gaines, Rose, and Werth and Ms Okawa); Department of Dermatology, University of Texas (Southwestern), Dallas (Dr Costner); and Philadelphia Veterans Affairs Hospital (Dr Werth).

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