Results of the questionnaire, which surveyed more than 4,000 people from more than 70 countries, were released in conjunction with Lupus Awareness Month, observed each May, and with the WLF-coordinated World Lupus Day —which was May 10. The 11-question survey took place April 10–26.
Survey questions covered lupus diagnosis, mobility, pain, social activities, daily activities, physical activity levels, and disease type. Among the participants, 95% were confirmed lupus patients, 2% suspected they had lupus, and 3% were caregivers.
Nearly 7 in 10 respondents indicated that lupus affected their mobility, according to a survey summary, with 10% needing a cane or other assistive device. Compared with younger respondents, older patients reported more disease impact on physical functioning or social activities.
Approximately 1 in 5 respondents indicated that lupus “limited a lot” of their ability to care for their children or family. Three in five participants said the inflammatory disease in some way limited their ability to use stairs at a normal pace. Additionally, 23% said lupus significantly limited them in doing chores such as vacuuming or yard work, and 44% reported being at least “a little limited” in their ability to get out of bed.
Nearly 9 in 10 respondents said lupus got in the way of ordinary social activities. Close to 4 in 10 said lupus interfered “quite a bit” or “extremely.” Some 73% of participants reported being less active than other people who do not have lupus.
In addition, almost 9 in 10 respondents said pain caused by lupus hindered regular activities such as chores and work outside the home, with 32% saying that lupus interfered in such activities “quite a bit” or “extremely” in the past four weeks.
Of the respondents, 67% had systemic lupus erythematosus (SLE) without nephritis (kidney disease). Some 22% had SLE with nephritis. The vast majority of participants (94%) were female, and most — 43% — were between 45 and 64 years of age.
For 32% of participants, a diagnosis took less than six months from their first appointment with a clinician; 24% said their diagnosis took between two and five years, while 12% said the journey to diagnosis took at least a decade. Overall, the disease had more of a physical and social effect on those whose diagnosis took at least two years, compared with those who were diagnosed within a year.
And SLE patients reported more pain and physical impact than those with discoid lupus erythematosus or other “skin lupus.”
“Lupus can impact every part of a person’s life,” said Jeanette Andersen, chair of Lupus Europe, a founding WLF member, in a press release. “Sadly, the physical impact of this disease, due to issues with mobility, pain, or fatigue, shows just how much lupus can affect one’s ability to do daily activities, stay physically active, or sometimes even get out of bed.”
“This can severely impact the quality of life, and underscores the importance for people with lupus to work with their care team to manage pain and mobility,” Andersen added.
Complete survey results are available here.
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