Effects of Demographic Identities on Psychosocial Burdens of Patients Living in the United States With Systemic Lupus Erythematosus.

Introduction: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease predominantly affecting women, particularly in African American populations. While its physical health impacts are well-documented, patients also face significant psychosocial burdens, including barriers to healthcare access, financial constraints, mental health challenges, and inadequate social support.

Study Goal: This cross-sectional study surveyed 294 SLE patients recruited from Facebook and Reddit social media forums to examine how demographic factors such as age, race/ethnicity, and geographic location influence these burdens.  Results: Findings revealed that although most participants had health insurance and access to rheumatology care, the majority were not able to be evaluated by their specialist until at least a week later after inquiring about an appointment, especially urban respondents. This does not appear to be a major limitation as such appointments may take in some cases months. Limited access to a pharmacy was reported more by respondents who are either rural residents, live in the Midwest region of the United States, or are older than 61 years old. Additionally, SLE is shown to impact patients financially. About 20.1% of the respondents indicated that they are unable to afford their co-pay for all of their monthly medications in general. Indian Asians were noted to pay more out-of-pocket medical expenses compared to other race/ethnicity groups. Respondents older than 61 years old were more likely to spend more than $200 a month on prescriptions for all their medical conditions than their younger counterparts. Regarding mental health, higher rates of anxiety and depression were reported across all groups, especially in a higher percentage of younger respondents under the age of 45. Despite this, there were no major differences in mental health changes between race/ethnicity and geographic location groups. Additionally, most respondents reported having some kind of social support for their SLE diagnosis, notably in the older than 61 age group. Suburban and urban respondents also reported receiving more support than rural ones.  Conclusion: Overall, this study highlights the complex interplay of socioeconomic factors and demographic identities in shaping the experiences of SLE patients, emphasizing the need for healthcare providers to consider these nonphysical aspects when developing treatment plans. Tailored interventions are essential to address the unique needs of diverse patient populations and enhance the management of SLE.