New tool helps to ensure better representation of minorities in future lupus quality of life studies

Lupus Foundation of America

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Researchers now have a cost effective tool to help them better understand the burden of disease among populations at high risk for developing lupus. A survey that people with lupus can fill out themselves and return by mail recently was tested among a group, mostly composed of African American patients, and found to be a valid tool to measure patient-reported organ damage among this population. 

In the past, African Americans and other at-risk populations were under-represented in previous studies on lupus that measured the impact of lupus on quality of life. These studies are important because they help doctors better understand how lupus affects various populations, and provides data that biotech and pharmaceutical industries need to stimulate additional investment in new lupus treatments. 

The tool, called the Self-Administered Brief Index of Lupus Damage (SA-BILD) is made up of 28 questions taken from a larger questionnaire that is used to measure organ damage caused by lupus.  The larger questionnaire must be administered by a qualified health professional, causing a heavy administrative burden.  The new SA-BILD tool can be mailed easily, at little cost, to lupus patients with diverse backgrounds. This procedure ensures that vulnerable populations will be well represented in future lupus quality of life studies. 

Researchers validated the SA-BILD by mailing the survey to a group of 711 patients with lupus who were asked to complete the survey and mail it back. During the patients’ next clinic visit, staff rheumatologists asked them the same questions without knowing how the patients had answered the survey. The two sets of answers then were compared and found to be 80 percent in agreement. The findings support the use of the SA-BILD as a valid measure of patient-reported damage in lupus. 

The patients who participated in the study were part of the Georgians Organized Against Lupus (GOAL) Study, a long-term survey-based project to learn more about how lupus affects the lives of those living with the disease. The GOAL study looks at patient quality of life, how patients use health care services, health disparities, how the disease progresses, illnesses the patients have in addition to lupus, and other valuable information. The validation of the SA-BILD is an important advancement that was achieved through the GOAL study.

The GOAL Study is an outgrowth of the Georgia Lupus Registry, one of seven registries that comprise the National Lupus Patient Registry (NLPR), an epidemiological study funded by the U.S. Centers for Disease Control and Prevention (CDC) and established to measure the incidence and prevalence of lupus among all populations. The Georgia Registry is managed by the Department of Rheumatology at the Emory University School of Medicine through a contract with the Georgia Department of Public Health. Dr. S. Sam Lim, Associate Professor of Medicine at Emory University School of Medicine, and Chief of Service for Rheumatology at Grady Memorial Hospital, is the principal investigator for the Georgia Lupus Registry. 

The Lupus Foundation of America was instrumental in advocating Congress to fund the NLPR  through the CDC to address a gap in the understanding of the impact of lupus. Data from the NLPR will provide better understanding of who gets lupus and how the disease affects various populations. The data will help stimulate additional private and public investment in lupus research and drug development.  

Validity of a Self-administered Version of the Brief Index of Lupus Damage in a Predominantly African American SLE Cohort
Arthritis Care & Research 2013, Accepted: Nov 05, 2013, doi:10.1002/acr.22231.
Epub 2014 May 27.