Background/Purpose:  Disparities in access to care to pediatric rheumatologists have been described in JIA, but little has been published in regards to pediatric lupus. We aimed to examine demographic and clinical features of pediatric lupus patients in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry with delays to first encounter with a pediatric rheumatologist and to investigate associations between delays and disease outcomes.

Methods:  CARRA registry data for participants meeting ACR classification criteria for lupus were analyzed. Delays of one month, 3 months, and one year from symptom onset to first encounter with a pediatric rheumatologist were examined. Predictors of delay, associations between levels of delay, and associations between delays and disease outcomes, including patient reported outcomes of pain and health-related quality of life, were investigated.

Results:  Data from 598 participants were analyzed. The median time to first encounter with a pediatric rheumatologist was 1.4 months; 24% of participants had delays between 1-3 months, 23% between 3 months to one year, and 9% had delays of one year or more. The percentage of participants with a family history of SLE (p-trend=0.004) and percentage of participants from a low income household (p-trend=0.01) increased significantly with each level of delay, while younger ages of onset were observed with increasing delays (p-trend=0.001). In multivariate regression models, presence of neurologic disease, absence of discoid rash, and location in a state with a low density of pediatric rheumatologists predicted delays of one month or greater. Younger age of onset, absence of proliferative lupus nephritis, and low density of pediatric rheumatologists predicted delays of 3 months or greater. Predictors for one year or greater were younger age of onset and low household income. Poor and very poor quality of life, disability by ACR functional class, moderate to severe pain, and worse patient/ parent global wellness scores were associated with delays of 3 months or more when assessed on follow up. All of these effects were significant after controlling for baseline outcome status, age of onset, sex, and race/ethnicity except disability by ACR functional class. When accounting for low income in these models, delays of 3 months remained a significant predictor for only health related quality of life with OR 5.00 (CI 1.46, 17.18).

Conclusion:  Severe delays of one year or more from symptom onset to first encounter with a pediatric rheumatologist exist in a notable minority of CARRA registry participants. Increasing delays in care are seen disproportionately in those who are younger, have a family history of SLE, and are from low income households. While location in an area with a low density of pediatric rheumatologists predicted delays of 1 month or greater and delays of 3 months or greater, no differences in the proportion of participants from these areas were seen between levels of delay. Delays of 3 months or more are associated with poorer outcomes, and worse health related quality of life even after accounting for confounding socio-demographic features.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/predictors-of-delays-to-care-and-associated-outcomes-in-pediatric-lupus-patients-from-the-childhood-arthritis-and-rheumatology-research-alliance-registry/