Background/Purpose: SLE often causes silent damage, making routine clinic and lab monitoring critical for detecting new manifestations or flares. The 2012 ACR nephritis guidelines recommended lab testing, including complement tests at least every three months, for those with history of nephritis and at least every six months for those without. Using these definitions, we previously characterized lab-defined SLE retention in care as having at least one complement lab test every six months and visit-defined retention by at least two annual visits, similar to definitions used by the WHO and CDC in HIV metrics. Previously, we reported 60% visit-based and just 23% lab-based retention at 1 yr. The strongest predictor of retention gaps was living in the most disadvantaged neighborhood quartile, which predicted 59% lower visit retention. In this study, we sought to examine rates and predictors of longitudinal retention in an academic SLE cohort.

Methods: Potential SLE cases were identified using electronic health record searches for adults with at least one SLE code and at least one rheumatology and one primary care visit in 2003-2016. Cases were then manually validated using the 1987 ACR and 2012 SLICC SLE criteria to include definite lupus cases. Baseline sociodemographics, SES, and neighborhood disadvantage were included as potential predictors. For this study, annual rheumatology clinic visits and complement lab tests were counted in each six-month period. Lab-defined retention for patients with nephritis was two labs per six mos, while for patients without current or former nephritis it was one per six mos. Cases were followed up to five years and were censored for death, migration, or loss to follow-up. We used proportions and multivariable logistic regression to report rates and predictors of lab- and visit-defined retention in care using odds ratios and 95% confidence intervals.

Results: Overall, 630 cases met ACR or SLICC criteria for definite SLE and were included in the study, 88% met ACR criteria, and 157 had nephritis history. Overall, 90% were female, 82% white and mean age was 42.4 years old (Table 1). Most patients (72%) were urban, 17.5% suburban, 10% from large or small towns, and 22% ever received Medicare. Two-visit-defined retention in care started at 85% and declined to 30% year five, compared to 84% year one and to 43% year five for patients with nephritis (Fig 1a). Complement defined retention was just 24% by two labs in year one and declined to 10% at year two (Fig 1b). This remained higher in nephritis patients 31% and 18% by two labs, but just 11 and 5% when requiring four labs per guidelines. Multivariable predictors of greater visit-defined retention included suburban residence and nephritis (Table 2).

Conclusion: Retention in lupus care began higher in our academic than our prior urban cohort but declined over time. Nephritis predicted more rheumatology visits, but lab-defined retention still fell far short of ACR guidelines showing opportunities for improvement. Suburban residence, likely representing higher education and resources, predicted better retention, showing the flipside of our prior findings of low retention with disadvantage, supporting a role for neighborhood context as a determinant of lupus care quality.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/examining-five-year-lupus-retention-in-care-in-an-academic-cohort/