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Abstract
Objective To explore the experiences of lupus patients, with a focus on the diagnostic journey, treatment needs, and overall experience.
Methods An independent market analytics firm conducted a survey of 306 lupus patients in the United States. The survey assessed a variety of topics, including the time to diagnosis, treatment experiences, and unmet informational needs. Data was collected via an online survey fielded in July and August 2023.
Results 38% of patients waited at least one year before seeking care after noticing symptoms, often delaying care because they did not believe their symptoms were severe enough [figure 1]. After seeking medical care, 31% of patients waited over one year to receive an accurate SLE diagnosis [figure 2]. This delay was often attributed to misdiagnosis, as lupus symptoms can mimic those of other conditions, such as migraine, hypertension, and rheumatoid arthritis. Additionally, the heterogeneous nature of lupus can make it difficult to diagnose [figure 3]. Patients who were misdiagnosed report that they were misdiagnosed 3.1 times on average. At diagnosis, lupus patients largely desired information on the specific treatments available, information on how to make lifestyle changes to improve outcomes, and information on how lupus would affect their other medical conditions. Despite these needs, many patients reported a lack of comprehensive education on lupus treatment options [figure 4].
Conclusions Results highlight the importance of patient-centered care and the need for comprehensive, accessible education on lupus treatment options. The lack of patient education can lead to patient dissatisfaction and underutilization of advanced systemic treatments.
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