Cracks in Healthcare Apparent in Lupus Community


Lupus patients who receive healthcare at more than one location face a greater risk of infection and comorbidities, research shows.

Lupus patients who receive healthcare at more than one location face a greater risk of infection and comorbidities, according to a new study.

The study reviewed healthcare records from nearly 4,500 lupus patients treated in six Chicago-area institutions. The results demonstrated that improving electronic health records and the health information exchange could have a positive impact on outcomes for lupus patients.

The study, published in Arthritis Care & Research, is one of the first to examine chronic disease via a multisite, integrated medical record database, said study author Rosalind Ramsey-Goldman, M.D, Dr.PH., rheumatology professor at Northwestern University Feinberg School of Medicine. And, currently, there is little existing information about how care fragmentation affects lupus patients.

“Care fragmentation isn’t good, and we need to understand it better because we need to improve outcomes. Young people could begin to die, and if they do survive, they survive with significant disease,” researchers wrote.


Understanding the impact of care fragmentation is important because lupus patients often receive care from a wide variety of providers. And, currently, there are few systems in place to ensure fluid communication between doctors treating the same patient.

The findings highlight the need for improved health information exchanges between electronic health records. The belief is improved communication will enhance outcomes, particularly among those experiencing ethnic and economic disparities. Not only would this type of system improve care coordination, but it would also engage patients to be more active in their own healthcare. It could, additionally, prevent services from being duplicated.

“We need to figure out a system that could put information into the electronic health record in a way that helps alleviate concerns. People don’t always have control over where they get care – they might lose a job or have insurance changes for any reason,” researchers wrote.


Researchers evaluated records from all ethnicities, and included patients with no health insurance, public insurance, and private insurance.

Of 4,276 lupus patients identified in the database, 856 (20%) received care from at least two facilities. Results showed these individuals experienced an increased risk of infection (OR 1.57; 95% CI 1.05, 1.70), 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). 

Overall, she said, African Americans (OR 1.66; 95% CI 1.40, 1.97) and patients on public insurance (OR 1.63; 95% CI 1.42, 1.95) experience the most negative outcomes. According to results, African Americans on public insurance were five times more likely to develop a serious infection, three times more likely to have nephritis, and more than seven times more like to have cardiovascular disease.

Based on documented outcomes, fragmented patients were more likely to experience severe infections overall (OR 1.76; 95% CI 1.49, 2.08). Researchers also found fragmented patients had more documented cardiovascular disease (OR 1.70; 95% CI 1.42, 2.05), stroke (OR 1.49; 95% CI 1.19, 1.85), nephritis (OR 1.78; 95% CI 1.51, 2.09), and end-stage renal disease (OR 1.85, 95% CI 1.48, 2.31).

Results also showed race and insurance status impacted co-morbidities that influence lupus-related cardiovascular and kidney damage. Being African American and being on public insurance was associated with greater cardiovascular disease. For example, the likelihood of cardiovascular disease was significant for fragmented patients (OR 1.51; 95% CI 1.23, 1.86), African Americans vs. white patients (OR 1.85; 95% CI 1.49, 2.29), and public vs. private insurance (OR 2.67; 95% CI 2.16, 3.21).

In addition, patients with fragmented care had a significantly higher median number of months listed in the database (66 vs. 61, p<0.0001), as well as a higher median number of lupus-related care visits (15 vs. 10, p<0.0001). There was no difference between fragmented and non-fragmented patients in the average number of monthly lupus-related visits.

Strengths & Weaknesses

The study had strengths. The database used to cull medical records pulled information from six major Chicago healthcare networks, including details from 2.3 million patients. Consequently, it offered insight into treatment provided to lupus patients from a wide variety of care settings, such as academic medical centers, public hospitals, and community health clinics.

There were, however, several limitations. Dates of service were limited to month and year, so it was difficult to measure any intra-month temporal relationships between events. Also, all data was focused on the Chicago area’s urban population, meaning results might not be applicable to rural communities.

Additionally, the database used did not include all medical data from the Chicago area, and some data that wasn’t included might have altered results. The database also only included insurance information from the most recent encounter, so it wasn’t possible to track a patient’s insurance coverage over time. And, lastly, it’s possible some lupus information was recorded as part of a primary care visit instead of a specific lupus encounter.

Ultimately, she said, this research and these results could improve clinical care over time, pushing practitioners to communicate more effectively.

“We must make sure everyone talks to each other – either through the medical record, by sharing physical record copies, or by speaking to one another. It makes sure that everyone is on the same page. And, if everyone knows what everyone else is doing, they we function as one super doctor,” researchers wrote.



Ramsey-Goldman, Rosalind, et al. “Disease Outcomes and Care Fragmentation among Patients with Systemic Lupus Erythematosus,” Nov. 29, 2016. Arthritis Care & Research. DOI: 10.1002/acr.23161.

Kho, AN, et al. “Design and Implementation of a privacy preserving electronic health record linkage tool in Chicago,” Sept. 22, 2015. Journal of American Medical Informatics Association. DOI: 10.1093/jamia/ocv038.

Feldman, CH, et al. “Serious Infections Among Adult Medicaid Beneficiaries with Systemic Lupus Erythematosus and lupus nephritis.” June 2015. Arthritis Rheumatology. DOI: 10.1002/art.39070.

Bisgaier J, et al. “Auditing access to specialty care for children with public insurance,” June 16, 2011. The New England Journal of Medicine. DOI: 10.1056/NEJMsa1013285.

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