Joyce Chang, MD, MSCE: Racial Disparities in Children With Systemic Lupus Erythematosus

Rheumatology Network interviewed Joyce C. Chang MD, MSCE, to discuss her study “Racial Disparities in Renal Outcomes over Time among Hospitalized Children with Systemic Lupus Erythematosus.” Chang is Assistant Professor of Pediatrics at Boston Children’s Hospital.

When asked why she believes minority groups have more morbidity related to renal diseases in pediatric onset systemic lupus erythematosus (SLE), Chang explains, “There are so many reasons. And it's anywhere on the spectrum. There are delays in diagnosis and access to the type of care that's needed to treat lupus. It takes a lot of a big team of specialists; it takes hospitals that can provide higher level of care for severe disease. It requires being in a place where there are pediatric rheumatologists who know how to treat kids with lupus. And then it comes to coping with all of the medicines, treatments, and side effects, and having an understanding of the reasons why we have to do certain things. [Patients must] trust the providers that are making these risk benefit calculations and explaining those to them. I think there are a lot of reasons why there are some children who may not do as well as others. And race is just one little proxy for somebody's life experience. And that can [also] encompass a lot of different things like where you live and socioeconomic status.”

The study focuses on hospitalization data from 50 freestanding children’s hospitals across the United States, including tertiary care centers. Hospital billing data was collected and submitted to a centralized place to deidentify patients. Investigators were able to easily extract cases of children with lupus who were hospitalized for any reason.

Results of the study indicated that pediatric patients with lupus are doing much better now when compared with just 15 years ago in terms of preventing end stage renal disease and having to go on dialysis.

“From that standpoint, I think there's a lot to celebrate,” Chang explained. “All of our efforts to learn how to take care of children with lupus is paying off, and we're doing much better for all groups of children.”

However, the study also highlighted the need to close the gap in racial disparities. “The relative Black and White disparities is exactly the same as it was in 2006. We really haven't moved that needle at all despite our efforts focusing on trying to standardize care and have better medicines. None of that really has seemed to make an impact on narrowing that gap.”

“This study, although it's in the context of pediatric mortality, it mirrors findings across other conditions,” Chang concludes. “It's not just limited to lupus. We've seen this pattern with other things like diabetes, asthma, and a lot of childhood conditions. One of my goals is to try to learn from everybody else and reach outside of rheumatology and try to figure out if are there pockets of people who are doing community-based interventions in other diseases. What successful models have they used so that we can learn from them and really apply some of those through those principles to improving the lives of kids with rheumatologic diseases?”