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New assessment tool helps shed light on lupus in kids worldwide
Date:11/9/2010

ral surveys and those that were developed for juvenile arthritis. "Lupus is a very chronic, fluctuating disease. In one person, it can affect their eyes, in another it can affect their kidney or brain, and in another person it can just be a rash that affects their appearance," Dr. Moorthy said. "We needed a scale that was general enough to capture all that, but at the same time be specific enough to capture the effects of lupus."

So, Dr. Moorthy developed SMILEY, which includes 26 questions, all of which have five possible responses corresponding with facial expressions ranging from very sad to happy. It is easy to use and score. Questions include how does lupus make you feel about going to school, how does lupus make you feel about the way you look, how does lupus make you feel about your future, and how worried are you about the side effects of your medications.

For the study presented at ACR, 125 children and parents participated from South America (Brazil and Argentina), Europe (Italy, Spain, Netherlands), and Asia (China). Children and parents filled out SMILEY as well as generalized quality of life and physical function scales. Physicians also filled out surveys gauging severity of disease and impact of the disease.

"By looking at the SMILEY scores, we can see that lupus has a major impact on the quality of life of children everywhere in the world, and while there are cultural differences in exactly how it impacts them, it has a major impact everywhere," Dr. Lehman explained. "The quality of life scores appear to be higher in Asia than in Europe, which was second highest, and South America. We want to look further into why the quality of life scores are different in Asia and how cultural factors and family expectations may play a role in this. Are there differences in how families cope with an ill child that may have a major impact on the quality of life scores and what can we learn from this?"

The researchers noted that the
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Contact: Phyllis Fisher
phyllis.fisher@gmail.com
212-606-1197
Hospital for Special Surgery
Source:Eurekalert

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