SAN FRANCISCO — Nearly 8% of 152 patients with cutaneous lupus erythematosus had refractory disease, a prospective epidemiologic study found.
Skin lesions remained active in these patients despite aggressive medical treatment with conventional therapies, Dr. Siamak Moghadam-Kia and associates reported in a poster presentation at the annual meeting of the Federation of Clinical Immunology Societies.
The investigators created an online database to describe disease characteristics and to gather longitudinal information on patients with cutaneous lupus erythematosus (CLE). The information should prove useful as biotechnology companies prepare to test new therapies for the disease, noted Dr. Siamak Moghadam-Kia of the dermatology department at the University of Pennsylvania, Philadelphia.
All adult patients with CLE who were seen from January 2007 to December 2008 at the university's cutaneous autoimmunity outpatient clinic were invited to participate in the pilot study. Their cutaneous disease was evaluated using the CLE Disease Area and Severity Index (CLASI), and at each visit patients completed the CLE-Modified Skindex-29 to assess quality of life.
Subgroups included patients with acute CLE (6%), subacute CLE (25%), chronic CLE (61%), SLE plus lupus erythematous-nonspecific skin disease (8%), and one patient (less than 1%) who had only lupus erythematosus-nonspecific skin disease. (Percentages total more than 100 because of rounding.)
Among patients whose disease was refractory to therapy, 58% had generalized chronic CLE, 17% had localized chronic CLE, and 8% had subacute CLE, with the rest in other categories, Dr. Moghadam-Kia reported.
Most participants in the study were women (82%), and most cases of refractory disease were in women. In the whole cohort, the female:male sex ratio was 8:1 in subjects with acute CLE, 5:1 in subjects with subacute CLE, and nearly 4:1 in subjects with chronic CLE.
The cohort and most subgroups included a mix of races, although the subacute CLE cohort was predominantly white. The racial profile of patients with refractory disease did not differ from race distribution in the cohort as a whole.
Patients with refractory disease were significantly more likely to have a current or prior history of smoking, compared with those whose CLE responded to treatment. Smoking may be a risk factor for refractory CLE, Dr. Moghadam-Kia suggested.
The study may be the first systemic multicenter epidemiologic study of CLE in the United States, he noted.
The investigators hope to use the database prospectively to monitor response to treatment and disease severity, to assess the feasibility of measures of disease flares, and to compare measures of skin-specific and general quality of life in patients with CLE. They also hope more clinical sites will be incorporated into the database.
The poster and the meeting program did not disclose any potential conflicts of interest for the investigators.