Background/Purpose: Research was undertaken to better understand how people living with lupus describe its sum total impact on their lives including work, challenges with relationships and its toll on mental health.

Methods: In January 2020 an email invitation to an online survey was sent to US members of MyLupusTeam, a social network of over 171,000 members. In total, 593 members completed the 21-question survey regarding experiences with lupus and impact of the disease on everyday life.

Results: The far-reaching impact on quality of life was evident in that most reported that they found it hard to exercise (85%) and do everyday chores (83%). They also felt that lupus interferes with social life (77%) and disrupts education/work (71%). The emotional toll of lupus manifested in anxiety (72%), depression (70%), feeling isolated/alone (66%) and ensuing challenges in sleeping (79%). Patients reported that the biggest triggers exacerbating lupus symptoms were stress (87%), fatigue (78%), UV exposure (71%) and cold weather (66%). Top two symptoms reported were joint pain/swelling (93%) and fatigue (92%) and these symptoms were considered to be the biggest obstacles to managing lupus (82% pain and 76% fatigue).  While lupus patients had a good understanding of potential lupus symptoms they might experience (75%) and potential triggers (68%), they were less clear on types of medications (58%), exercises (54%) and foods to eat/avoid (48%). The sum total impact of lupus is that only 49% reported that they are able to lead a full life.

Conclusion: Understanding the physical, emotional and quality of life impact of lupus, can help rheumatologists provide a more holistic approach to treating lupus patients. Importantly, by addressing the mental health aspects of lupus, HCPs can help create better health outcomes, including treatment adherence and effective self-care regimens.

Triggers That Worsen Lupus Symptoms

Impact of Lupus on Quality of Life

Emotional Toll of Lupus

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-reported-impact-of-lupus-on-quality-of-life/