By Kelli Carrington
Does a person's ethnicity influence his or her experience with lupus? New research supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) says it can, at least to a certain extent. Ethnicity includes race (and a given genetic background) as well as cultural values and beliefs and practices, which in the United States are associated with a certain socioeconomic status. Ethnicity, in fact, may have greater influence on lupus than genetics.
This information comes from the study LUpus in MInorities: NAture versus Nurture (LUMINA), conducted by researchers from the University of Alabama at Birmingham, the University of Texas-Houston Health Sciences Center and the University of Texas Medical Branch at Galveston. The study, which includes over 300 African-American, Hispanic and Caucasian lupus patients aged 20 to 50 years, is designed to identify the relative contribution of genetic and socioeconomic factors on the course and outcome of lupus among these three ethnic groups. LUMINA researchers are looking at features such as
- socioeconomic-demographic characteristics (e.g., age, gender, marital status, income, health insurance);
- clinical attributes (e.g., disease onset and duration, clinical manifestations, treatments);
- behavioral-psychosocial factors (e.g., social support, abnormal illness-related behaviors, feelings of helplessness, acculturation [Hispanics only]);
- immunologic factors (e.g., autoantibodies);
- and genetic factors (e.g., genotypes, allotypes).
An essential part of this study is patient recruitment, and a difficult issue for researchers is recruiting minority research participants. Seemingly, various barriers exist among the different minority groups, including trust, language and cultural mores. African-American patients in general, and particularly in Alabama, have been leery of participating in medical research as a result of the Tuskegee Syphilis Study: a 40-year research study of 399 African-American males who were not informed of changes made in the protocol, and who were not notified when effective treatment became available. As a result, many of the patients died from complications caused by syphilis. For Hispanic patients, language differences between the patient and the researcher form a barrier for communication and understanding. Cultural values, beliefs and practices exist as barriers for both minority groups.
Fortunately for the LUMINA researchers, these barriers have been overcome through targeted recruitment efforts, including the use of a community hospital treating African-American patients, and through local radio advertisements targeted at the Hispanic community. As a result, 86 Hispanic and 135 African-American patients have been recruited. The same recruitment barriers have not existed for the 92 Caucasian patients.
To date, the LUMINA study reveals that ethnicity, above several factors, makes a significant impact on some aspects of the disease. Both African-American and Hispanic lupus patients tend to develop lupus earlier in life, experience greater disease activity at the time of diagnosis (including kidney problems), and have more severe disease overall than Caucasian patients. Further, African-American patients have a higher frequency of neurologic problems such as seizures, hemorrhage and stroke, while Hispanic patients experience cardiac disease more frequently.
Ethnicity does not act alone in influencing disease course and outcome, however. LUMINA researchers found that after ethnicity, socioeconomic-demographic factors such as age, income, employment, education, and health insurance seem to play a major role in the course of lupus. Many of these factors are associated more with the African-American and Hispanic patients than Caucasian patients, which may begin to explain the worse disease outcomes experienced by these two groups.
Feelings of helplessness (e.g., despair over the disease and its symptoms), insufficient social support, and overall abnormal illness-related behaviors such as denial have been found to influence both mental and physical functioning of patients, independent of ethnicity. Having identified these behavioral-psychosocial factors as applicable across all ethnic groups studied, LUMINA researchers believe this to be a good starting point for intervention directed by the health-care provider. Interaction between the health-care provider and patient may be one way to address these contributing factors.
Although LUMINA results to date do not implicate genetic influences as commonly responsible for differences in the early course of disease among these ethnic groups, researchers believe there are relevant genetic factors to be identified. LUMINA researchers hope to further this study of nature versus nurture by including more patients. What roles genetic and socioeconomic-demographic factors play in the course and outcome of lupus in these ethnic groups remains under investigation.
- Reveille JD, et al. Systemic lupus erythematosus in three ethnic groups: I. The effects of HLA Class II, C4, and CR1 alleles, socioeconomic factors, and ethnicity at disease onset. Arthritis and Rheumatism 1998; (41): 1161-1172.
- Alarcón GS, et al. Systemic lupus erythematosus in three ethnic groups: II. Features predictive of disease activity early in its course. Arthritis and Rheumatism 1998; (41): 1173-1180.
- Alarcón GS, et al. Systemic lupus erythematosus in three ethnic groups: III. A comparison of characteristics early in the natural history of the LUMINA cohort. Lupus in minority populations: Nature vs. Nurture. Lupus 1999; (3): 197-209.
- Friedman AW, et al. Systemic lupus erythematosus in three ethnic groups: IV. Factors associated with self-reported functional outcome in a large cohort study. Arthritis Care and Research 1999; (12): 256-266.
- Alarcón GS, et al. Systemic lupus erythematosus in three ethnic groups: V. Acculturation, health-related attitudes and behaviors, and disease activity in Hispanic patients from the LUMINA cohort. Arthritis Care and Research 1999; (12): 267-276.
The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases. For more information about NIAMS programs and topics, call our information clearinghouse at (301) 495-4484.