World Lupus Federation Global Survey 2020 – Topline Summary

The World Lupus Federation conducted a global survey on how lupus affects physical function and quality of life. The survey consisted of 11 questions and responses were submitted from April 10 to April 26. More than 4,000 people responded to the survey with over 3,500 complete responses. Participants from more than 70 countries completed the survey. The survey results highlight that lupus impacts physical function and quality of life. Topline results of the survey include:

  • Nearly 7 in 10 participants responded that lupus impacted mobility, including 1 in 10 that needed a cane or another apparatus. Overall, younger people with lupus report being less impacted by physical functioning or social impact compared to older people with lupus.
  • Nearly 1 in 5 participants responded that lupus significantly affected (“limited a lot”) their ability to perform childcare or care for your family. 3 in 5 participants responded that lupus in some way limited their ability to go up and down stairs at a normal pace.
  • Nearly 3 in 4 participants responded that they are physically less active than other persons their age who do not have lupus.
  • Nearly 9 in 10 participants responded that lupus interfered with normal social activities with family, friends, neighbors or groups. Nearly 4 in 10 responded that lupus interfered “quite a bit” or “extremely.” 
  • Nearly 9 in 10 participants responded that pain interfered with normal activities, including both work outside the home and housework. 3 in 10 responded that lupus interfered “quite a bit” or “extremely.”

Overall, people with lupus who report their lupus diagnosis taking two years or more experience higher physical burden and social impact than those who receive their diagnosis within 12 months. Those with skin lupus (DLE or other) are less affected physically, whereas those with SLE experience highest impact, particularly with pain. One thing all people with lupus seem to experience, despite different types of lupus, is difficulty getting out of bed.

Click here to view the complete global survey results.

Written by World Lupus Federation

The World Lupus Federation (WLF) is a coalition of lupus groups around the world who work together to improve the quality of life for people living with lupus, their family members and caregivers.

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