Disease Outcomes and Care Fragmentation Among Patients With Systemic Lupus Erythematosus

Abstract

Objective To examine the impact of care fragmentation across multiple healthcare institutions on disease outcomes in patients with systemic lupus erythematosus (SLE). Methods Using the Chicago HealthLNK Data Repository (HDR), an assembly of electronic health records from six institutions, we identified patients with SLE, using ICD-9 codes, whose care was delivered at more than one organization. We examined whether patients had severe infections or comorbidities (ICD-9 code defined) that indicate SLE-induced damage. T-tests and chi-squared tests were used to examine differences between fragmentation groups. Logistic regression was used to assess factors contributing to the occurrence of disease outcomes. Results We identified 4,276 patients with SLE. 856 (20%) received care from more than one healthcare institution. African American patients and patients with public insurance were more likely to experience care fragmentation compared to white and private insurance patients (OR 1.66; 95% CI 1.44, 1.97 and OR 1.63; 95% CI 1.42, 1.95). We identified increased risk of infections (OR 1.57; 95% CI 1.30, 1.88), cardiovascular disease (OR 1.51; 95% CI 1.23, 1.86), end stage renal disease (OR 1.34; 95% CI 1.05, 1.70), nephritis (OR 1.28; 95% CI 1.07, 1.54) and stroke (OR 1.28; 95% CI 1.01, 1.62) among patients with fragmented care, adjusted for age, sex, race, insurance status, length of follow-up time, and total visit count. Conclusion In this cross-site cohort of SLE patients, care fragmentation is associated with increased risk of severe infection and comorbidities. These results suggest that improved health information exchange could positively impact outcomes for SLE patients.

Widening Disparities Among Patients With Rheumatic Diseases in the COVID‐19 Era: An Urgent Call to Action

“…As rheumatologists, we are acutely aware of the higher morbidity and mortality rates, and for a number of the diseases we treat, the higher incidence and prevalence among racial/ethnic minorities and individuals of lower socioeconomic status (SES) (). Comorbidities are frequent, timely access to subspecialty care is limited, receipt of high‐quality care is less common, and care is more often fragmented, with frequent, avoidable acute care use (). Among patients with systemic lupus erythematosus (SLE), where these disparities have been shown to be particularly pronounced, prolonged glucocorticoid use and delayed or lack of standard‐of‐care immunosuppressive use is common, and hydroxychloroquine (HCQ), the backbone of SLE therapy to prevent flares and organ damage, is underprescribed and adherence is suboptimal ().…”

Systemic Lupus Erythematosus in Primary Care: An Update and Practical Messages for the General Practitioner

“…Due to the multi-organ nature of the disease, patients often have to face a fragmented care system as they need even more specialized care, especially in case of severe manifestations such as renal or neuropsychiatric disease. This situation, apart from causing patient discomfort, has been associated with negative outcomes ( 6 ). Unfortunately, there is a lack of high quality evidence for interdisciplinary specialty care in the management of lupus ( 178 ).…”

“…Thus, lupus is no longer considered to be a rare disease and at the community level, there is likely a considerable number of patients who remain undiagnosed or experience significant diagnostic delays ( 4 ). Further, the burden of SLE is increasing in a fragmented health care system ( 5 , 6 ). To optimize patient referral and management, the American College of Rheumatology (ACR) developed relevant guidelines in 1999 ( 1 ), which recommend that general practitioners (GPs) should monitor patients with mild stable lupus and manage more severe forms of disease in close collaboration with a specialist.…”

Perspectives of Medical Specialists From Different Disciplines on the Management of Systemic Lupus Erythematosus: An Interview Study

“…Multidisciplinary clinics are widely advocated in the management of SLE . Fragmentation of care across institutions has been shown to result in poor outcomes for patients with SLE , while fragmentation across medical specialties has led to unwarranted variation in clinical practice . Coordinated and integrated health care models may help make care more patient centered, improve patient experiences by decreasing the confusion surrounding seeing multiple health care providers, and provide access to all relevant clinical expertise.…”