Study Finds Clinical Care is Highly Variable for People with Childhood-onset Lupus

A recent study assessing medical care for people with childhood-onset lupus as well as mixed connective tissue disease (MCTD, an autoimmune disease similar to lupus) found that clinical care, timeliness of follow-up visits and disease prevention measures were highly variable across the 110 children included in the study (99 with lupus, 11 with MCTD).

Researchers created and used a pediatric lupus care index (p-LuCI) as a tool to objectively measure different aspects of medical care. The index looked at 13 different aspects of care, including types of clinical assessments performed at medical visits, vaccines provided, blood work or testing performed, types of medications prescribed and how doctor’s visits were scheduled.

They found broad variability in care. Steroid-sparing drug therapy was the most common characteristic of care (provided in 95% of people), while appropriate scheduling of doctor’s visits occurred the least frequently (in just 27% of people). Those on disease-modifying antirheumatic drug therapy, those with nephritis (kidney disease), and those earlier in their disease course had higher p-LuCI values, indicating an overall higher level of care. People cared for by providers who saw a higher volume of patients with childhood lupus and by rheumatology fellows (a doctor training to specialize in rheumatology) also had higher p-LuCI scores.

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Read the Study