Hormonal and Environmental Risk Factors for Developing Systemic Lupus Erythematosus: The Carolina Lupus (CLU) Study

Systemic lupus erythematosus (SLE) is severe, chronic, disabling autoimmune disease that
significantly affects health status and quality of life. Since the disease occurs most often
in young to middle-aged adults, SLE can also affect work and disability. However, there is
currently little information on work-related disability from longitudinal, population-based
studies of SLE.

Participants were enrolled into the Carolina Lupus Study between February, 1997 and July
1999. We plan to conduct two telephone contacts with patients and one telephone contact with
controls in a follow-up study to be conducted in 2001. The first patient contact will follow
an introductory letter that describes the follow-up study. This letter provides participants
the opportunity (via a toll-free phone number) to decline further contact about this study.
The first patient contact will be a short (5 minute) interview in which we determine their
current source of lupus-related medical care, timing of next expected visit, and update
contact information. The second contact will involve a 60-minute telephone interview
covering medical care utilization, current health status (including a patient-administered
measure of lupus activity), work and disability issues, psychosocial attributes (e.g.
helplessness, social support, daily stressors including race-related issues), and changes in
exposures since the initial interview. We will attempt to schedule the patients' interviews
within 3 months before or after the patient sees his or her own physician for SLE-related
evaluation or treatment. A short (15 minutes or less) telephone interview will be conducted
with controls focusing on current health, work status, and daily stresso.

Ddisease damage will be assessed using the System Lupus international Collaborating Clinics
(SLICC)/American College of Rheumatology (ACR) Damage Index, a standardized and validated
instrument that is completed by the patient's physician.

We will seek death certificates for patients and controls who have died in order to obtain
cause of death information. Next-of-kin information from death certificates will not be
used.

This study will allow up to determine the feasibility of obtaining reliable data on disease
damage from more than 50 physicians involved in the treatment of patients in the Carolina
Lupus Study. This developmental work is a necessary foundation for any additional follow-up
studies of the Carolina Lupus Study cohort. We will also be able to examine associations
with disability in patients and in controls and to examine the contribution of various
factors to the increased disease severity experience by African-American SLE patients.