Background/Purpose: Systemic lupus erythematosus (SLE) presents heterogeneously and can be difficult to diagnose. Once diagnosed, prompt evaluation and treatment by a specialist can prevent morbidity. Few studies have systematically quantified delays in diagnosis and access to specialty care in SLE. Using a large cohort of individuals with confirmed SLE, we aimed to characterize patient-perceived delays in diagnosis and access to specialty care at SLE onset.

Methods: Data were derived from the California Lupus Epidemiology Study (CLUES), a population-based, longitudinal, multi-ethnic cohort of patients with SLE. Data were collected via annual telephone interviews and in-person clinical visits. Questions included time from onset of symptoms to seeing a doctor and to diagnosis of SLE, the number of doctors seen before SLE diagnosis, specialty of diagnosing physician, specialty of doctor giving incorrect diagnosis, and the time until first visit with a specialist (rheumatologist or nephrologist) if not initially diagnosed by one. We examined the relationships between these variables and race/ethnicity, poverty (<125% of federal poverty level; FPL), education (≤high school, vocational/trade schooling, college, postgraduate), and self-assessed health literacy (adequate vs. limited, using a validated 4-item scale), testing the differences with chi-square tests.

Results: This study included 417 patients, 90% female with a mean age of 47±14 years. 90% met ≥4/11 ACR criteria for SLE; the balance had a physician diagnosis of SLE and/or lupus nephritis. The racial/ethnic distribution was 31% Caucasian, 35% Asian, 23% Hispanic and 11% African-American. Twenty-two percent had an education level ≤ high school, 19% were >125% FPL, and 40% with low health literacy. Time from symptom onset to seeing a doctor varied, with 65% seen in < 6 months, 12% in 6-12 months, 7% in 1-2 years and 16% waiting >2 years. Time from symptom onset to receiving a diagnosis also varied, with 48% of participants waiting >6 months. 39% of patients received an incorrect initial diagnosis, most commonly from primary care physicians. There were no significant differences for any of these outcomes by race, education, health literacy or poverty level. For patients who were initially diagnosed with SLE by a non-specialist, racial/ethnic minorities and those with a high school education or less were more likely to wait longer than 3 months for a referral (both p= 0.03). Compared with those with less education, patients with higher levels of education saw more doctors before receiving a correct diagnosis (mean=2.1 vs 2.6; p=0.02).

Conclusion: Overall approximately half of this study’s patients waited >6 months to receive a diagnosis of SLE, and 39% received an incorrect initial diagnosis. Access to specialty care varied significantly, with racial/ethnic minorities, and those with low education waiting longer to see a specialist. Those with a higher education level saw more doctors prior to receiving a diagnosis, which could potentially be explained by greater access to healthcare in general. This study suggests that efforts to decrease diagnostic delays and errors, particularly among at-risk populations with SLE, are warranted.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/diagnostic-delays-and-disparities-in-access-to-care-in-systemic-lupus-erythematosus/