Background Lupus is a complex, chronic autoimmune disease affecting an estimated 1.5 million Americans.

Lupus symptoms are heterogeneous. Suboptimal diagnostic tests have contributed to diagnostic delay. Reducing diagnostic time is critical to preventing poor long-term outcomes. An objective of the 2020 survey sought to understand how access to healthcare is associated with diagnostic delay factors.

Methods A 25-question retrospective cross-sectional online survey on diagnostic time factors was developed by the Lupus Foundation of America (LFA) in partnership with Exagen. Using convenience sampling, individuals who self-reported SLE were recruited and 1,313 responded. Descriptive statistics and chi-square tests were conducted.

Results Almost half of respondents (45.4%) were diagnosed within a year of their first health care provider visit to discuss symptoms, while 29.1% reported five or more years to diagnosis. Factors delaying diagnosis may include misdiagnosis and the number of visited doctors. On average, respondents saw 2.8 different types of doctors before diagnosis. Nearly a third reported they were diagnosed with anxiety (31.7%), depression (29.8%), or fibromyalgia (23.0%) before their lupus diagnosis, and 21.8% were told nothing was wrong with them.

Decreased care access and high costs associated with delayed lupus diagnosis. More than a third (35.9%) of respondents diagnosed after five or more years reported that out-of-pocket costs were too high, compared to 22.8% diagnosed within a year (table 1). Over half diagnosed after a year cited long wait times for specialist appointments, compared to 39.4% of those diagnosed within a year. Respondents diagnosed after a year were more likely to report insurance not covering costs, long wait times for appointments with primary care physicians (PCP), and lack of nearby doctors treating lupus.

Conclusion Multiple factors associated with lupus diagnosis delays, including delayed access to specialists, onerous health care costs, and health insurance obstacles. An ongoing shortage of rheumatologists may further magnify the delay in diagnosis and explain the apparent long wait times for specialists, misdiagnosis, and increasing costs. Further practitioner education, rheumatology provider recruitment, and studies examining reasons for lupus diagnosis delays may help us better understand and reduce inequities in reaching a prompt lupus diagnosis.

It is important to recognize the limitations of the study; the convenience sample study design lacks the rigor of random sampling, some questions may have introduced recall bias, and socioeconomic status and disease burden at time of diagnosis weren’t addressed in this survey.

Acknowledgments The Lupus Foundation of America received funding from Exagen Inc. to support study data collection.