In a new study, researchers surveyed people living with systemic lupus erythematosus (SLE) to examine if demographic factors such as age, race/ethnicity, and geographic location, influence health and psychosocial burdens— including barriers to healthcare access, financial constraints, mental health challenges, and inadequate social support. 

Researchers surveyed 294 people living with SLE who were recruited from social media forums on Facebook and Reddit. Each individual completed an anonymous online survey to quantitatively measure the effects of demographic identities and psychosocial burdens associated with SLE. Survey results revealed that people living with SLE face various psychosocial burdens and struggle with a variety of factors, including:

• Accessibility to Healthcare: Timely access to high-quality healthcare, particularly rheumatologists, is crucial for managing SLE. However, barriers such as limited specialist availability and inadequate insurance coverage/financial constraints can limit access to necessary medications and therapies, ultimately hindering SLE management. These challenges are often exacerbated for minority groups and rural residents, leading to poorer health outcomes.
• Finances: Most people living with SLE across various demographics report financial burden due to high costs of hospitalizations, doctor appointments, and medications. Additionally, these people were twice as likely to report cost-related prescription non-adherence to save money. Furthermore, there is a link between lower income levels and poverty with multiple adverse outcomes in SLE, including increased disease activity, organ damage, higher mortality rates, depression, work loss or disability, and reduced physical functioning and quality of life.
• Mental Health: People living with SLE are at increased risk of worsening mental health, with most respondents reporting anxiety (80.6%) and depression (71.8%). Additionally, while substance abuse rates among people living with SLE were not significantly higher than the general population, those who are younger and in rural areas showed a slight increase in alcohol and tobacco use. 
• Social Support: A major determinant of mental health for people living with SLE is the level of social support. The study found that most respondents had some level of social support (91.9%); primarily from family (50%), support groups (67.7%), and regular check-ins with their support systems at least one time per week (61.2%). Strong social support has been linked to better health outcomes and quality of life for people living with SLE. 

The study findings emphasized the need for healthcare providers to consider nonphysical aspects, including socioeconomic and demographic factors, when developing treatment plans. Providers, particularly rheumatologists and primary care providers, should consider these nonphysical burdens and recognize the multitude of factors that can impact individual outcomes. This awareness is crucial for developing effective treatment plans and enhancing the management of SLE. Future studies are needed to research the correlation between demographic identities and psychosocial burdens for people with SLE. Learn more about advancing health equity in lupus.

Read the study