Dec. 03, 2012

Research Funded by LFA Presented at 2012 American College of Rheumatology Meeeting

Studies Focus on Advancing Research and Improving Quality of Life for People With Lupus

WASHINGTON—Groundbreaking research funded by the Lupus Foundation of America was on prominent display recently during the 2012 American College of Rheumatology (ACR) scientific meeting in Washington, D.C. The areas of research supported by the Lupus Foundation of America and presented during the meeting included studies on pediatric lupus, quality of life, cutaneous lupus (lupus that impacts the skin), and genetics of lupus.

These studies are critically important to advancing the science and medicine of lupus, and improving the quality of life for individuals affected by this unpredictable, mysterious, and potentially fatal autoimmune disease. The Lupus Foundation of America’s National Research Program is unique because it directs research funds where gaps exist in the understanding of lupus, and toward promising areas of study.Studies and key findings of research funded by the Lupus Foundation of America and presented during the 2012 ACR meeting include:

Childhood-Onset Lupus:
“Validation of PROMIS™ Modules for Use in Childhood-Onset Lupus”

Hermine I. Brunner, M.D., M.Sc., M.B.A., Professor of Pediatrics at the Cincinnati Children’s Hospital Medical Center

Not much is known about the effect of childhood-onset lupus and its treatment on quality of life. Physicians need to be able to measure the effects of treatments so they can determine whether they are working and/or causing any side effects. Collecting and analyzing this data also helps physicians learn what might be the best treatment options for a particular complication of lupus. Gathering this information from children is particularly challenging for physicians because children often don’t possess the same communications skills as adults. Physicians need an efficient way to gather information from their young patients to improve the treatment of childhood lupus. In this study, Dr. Brunner compared the performance of PROMIS™, a publicly available system that collects data electronically to help measure patient-reported outcomes, with other tools currently used to measure quality of life in children with lupus (this includes tools that collect a lot more data and take much longer to complete). Pediatric PROMIS™ Short Forms include 10 or fewer items each and require just five to 10 minutes to complete. The results of this preliminary study suggest that using the PROMIS™ Short Forms is feasible and valid. If the results can be confirmed in a larger study that involves more children with lupus, physicians will be able to utilize the Short Forms on a larger scale to more efficiently measure disease-related data in children with lupus.

Patient-Reported Outcomes:
“Equivalence of Various Language Versions of Lupus Specific Patient Reported Outcomes Measure (LupusPRO)”
Meenakshi Jolly, M.D., M.S., Associate Professor of Medicine in the Department of Medicine at Rush University Medical Center

It has long been observed that people with lupus who belong to different racial and ethnic groups, socioeconomic classes, and health care systems have different health outcomes. Researchers need to be confident that tools used to measure health outcomes will produce consistent and meaningful information among people with lupus from around the world who speak different languages and have different cultural backgrounds. One valid and reliable tool used here in the United States for people with lupus of both genders and varied ethnic backgrounds is the Lupus Specific Patient Reported Outcomes Measure (LupusPRO). The purpose of Dr. Jolly’s study was to report on the ability of different language versions of the LupusPRO to measure health outcomes in a similar way. The study involved people with lupus from a number of countries who speak English, Spanish, or Turkish. Results show that, in general, the LupusPRO is able to measure health outcomes in a similar way across these languages. This multi-language capability will facilitate its use in cross-national and cross-cultural studies of health outcomes and disparities in lupus that require a large number of participants to produce meaningful data, and will help advance our understanding of the disease and how it can be more effectively managed.

Cutaneous Lupus (lupus that impacts the skin):
“The Impact of Dyspigmentation and Scarring in Cutaneous Lupus on Quality of Life”

Victoria P. Werth, M.D., Professor of Dermatology and Medicine in the Department of Dermatology at the University of Pennsylvania

It is known that people with lupus who exhibit severe forms of cutaneous (skin) lupus disease activity often have a much poorer quality of life than those with milder disease. In addition, patients who have improvement in their lupus activity with therapy have improvement in their quality of life. It is unknown, however, whether increased cutaneous lupus-mediated skin damage, such as pigment changes and scarring, have an impact on quality of life. This information is important because it can help physicians better understand the physical and emotional impacts of lupus on their patients with lupus and provide the best possible care. The purpose of this study was to determine the relationship between skin damage, as measured using the Cutaneous Lupus Area Activity and Severity Index (CLASI), a validated cutaneous lupus scoring tool, and the quality of life for people with lupus from three population groups (African-Americans, Caucasians, and Asian-Americans) as measured by Skindex-29, a self-administered questionnaire that measures comprehensively the effects of skin diseases on quality of life. The results show that there are significant differences in CLASI-measured skin damage across the three groups, both during the initial and follow-up visit, about two years later. Surprisingly, the level of CLASI damage did not seem to have any relationship to the overall quality of life scores seen among people from any of the three groups studied. In fact, many patients with minimal CLASI damage have poor quality of life. More research will be needed to better understand the relationship between CLASI damage and quality of life.

Genetics of Lupus “Epigenetic Factors in Autoimmune Disease”
Bruce C. Richardson, M.D., Ph.D., Professor of Medicine in the Department of Internal Medicine at the University of Michigan.

Lupus develops as the result of both genetic and environmental factors. All (non-sex) cells in the body have the same DNA. As cells divide, however, specific genes express themselves in different ways, guiding the process to form a specific type of cell, such as a blood cell, skin cell, kidney cell, and so forth. Along the way, certain factors can affect how these genes are expressed, resulting in changes that do not involve changes in the underlying DNA sequence. These are known as epigenetic changes. Dr. Bruce Richardson discussed how epigenetic changes relate to the risk of developing lupus, and the tools researchers use to study these changes. Epigenetic changes can be induced experimentally in animals, which is sufficient to cause the development of lupus. Interestingly, the same kinds of epigenetic changes are seen in people with lupus.

Methylation is a type of epigenetic change by which the activity of genes important for immunity are altered, but the genes themselves are not changed. Specifically, human studies indicate that environmentally-induced changes (reduction) in the methylation status of DNA for T cells, which can be influenced by aging and diet, cause overexpression of specific genes that are normally inactive and contribute significantly to the development of lupus in genetically predisposed individuals. The degree of methylation of DNA for T cells is now known to significantly influence the development of lupus in both humans and animals. Such changes can be induced experimentally in animals with specific drugs, but also in humans (genetically susceptible to lupus) by their exposure to ultraviolet light. Interestingly, genetic studies in humans illustrate that changes in DNA methylation are sufficient to explain cases of lupus where one identical twin has the disease and the other does not.


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