2019 Lupus Awareness Survey Summary

Executive Summary 

A recent survey was conducted for the Lupus Foundation of America by Qualtrics to explore American adults’ awareness and knowledge of lupus. 1,072 online respondents participated in the survey if they had at least heard of lupus, and was designed to be representative of the U.S. population. Of the survey respondents 16% are African American / Black, 16% are Hispanic and 13% are Asian / Pacific Islander. The study found that: 

More than half of Americans lack awareness, understanding of lupus.

• Out of 1,241 respondents 63% of Americans surveyed have never heard of lupus or know little or nothing about this disease and its symptoms, presenting a significant opportunity for continued public education. 30% responded that they had heard of the disease, but know very little about it; 19% say that they have heard of the disease but know nothing about it; and 14% responded that they had never heard of the disease. (Note: Individuals who said that they had not heard of lupus were excluded from the remainder of the survey.)
• Only 16% said that they were very familiar with the disease and its symptoms, and 20% indicated that they were somewhat familiar with the disease and its symptoms. 
• In general, individuals are more familiar with Alzheimer’s, epilepsy, Parkinson’s, and multiple sclerosis than they are with lupus.   

African Americans and Hispanics indicated slightly greater awareness of lupus compared to other groups. 

• More than half (54%) of African Americans and 43% of Hispanics indicated being somewhat or very familiar with the disease and its symptoms, compared to 39% of Caucasians. Overall, 36% of all respondents indicated being somewhat or very familiar with the disease and its symptoms. 

Most Americans recognize that lupus more commonly affects women.

• Almost three-quarters (71%) say it is false that lupus affects mostly men, and 30% think it is true.

Lupus is broadly recognized as a serious disease and potentially fatal.

• More than 8 in 10 (85%) recognize lupus as a serious disease that can stop a person from working or doing daily activities.
• About 8 in 10 (81%) recognize lupus can be fatal. 
   

Americans are unsure about the age lupus typically onsets and the available treatment options.

• Respondents seemed unclear about available treatment options for lupus, with 57% disagreeing that there is only treatment developed specifically for lupus.
• 42% believed that most people develop lupus after age 45.

Most Americans believe that there is no cure for lupus and that it cannot be prevented. 

• 28% believed there is a cure for lupus, while almost three-quarters (72%) correctly identified the statement as false. 
• 31% thought lupus can be prevented, while the majority (69%) correctly identified the statement as false.

A majority of respondents did not recognize that minority populations were disproportionately impacted by lupus. However, individuals who are demographically more at-risk for lupus are also more worried about developing lupus, compared to the overall sample.

• Over half of respondents (62%) thought Caucasians are more likely to develop lupus.
• Hispanic individuals mostly believed Hispanics are most likely to be affected by lupus, while non-Hispanics believe that Caucasians are most affected. 76% of African Americans said that they were more likely to develop lupus, and 53% of Hispanics said they were more likely to develop lupus. 
• Overall, less than one-third (29%) of respondents are worried about developing lupus. 43% of Hispanics, 35% of African Americans and 34% of Asian/Pacific Islanders are worried about developing lupus.

A majority of Americans significantly underestimate the time it takes to receive an accurate lupus diagnosis. 

• Over half of respondents (61%) believed it takes six months or less for a person to be accurately diagnosed with lupus. On average people with lupus wait an average of six years before they receive an accurate diagnosis after first noticing symptoms. 
• 65% of those surveyed also believed that lupus can be diagnosed with a single blood test. 

Significant gaps exist around Americans understanding and knowledge of the symptoms of lupus.  

• Only about a third of respondents could identify symptoms of lupus other than painful/swollen joints or extreme overwhelming fatigue.  
• Over half did correctly identify painful or swollen joints (61%) and extreme overwhelming fatigue (58%) as symptoms of lupus. Additional symptoms and responses include:
  • Rash: 38%
  • Pain in the chest on deep breathing (pleurisy): 36%
  • Hair loss: 32%
  • Photosensitivity (breaking out in a rash after being in the sun): 31%
  • Persistent fevers: 30%
  • Abnormal blood clotting: 29%
  • Fingers turning white and/or blue when cold: 29%
  • Mouth or nose ulcers: 24%
  • None of these: 9%

Half of Americans reported a personal connection or experience with lupus. 

• 50% of Americans report being touched by lupus – about a one-third (31%) say they have a friend or someone they know personally with lupus, 16% responded that they have a family member or relative with lupus and 3% said that they had lupus.