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Background: Systemic lupus erythematosus (SLE) is a heterogeneous condition that can impact patients in diverse ways. Understanding the variations of patient experience and identifying typical patterns, is critical to address peoples’ individual needs.
Objectives: To explore to what extent patient experiences with lupus can be grouped into different “clusters” based on disease activity and impact on life that could drive a typology of lupus experiences.
Methods: As part of the ‘Lupus Europe Living with Lupus 2024 survey’ programme, patients were asked to select one of 10 proposed scenarios that best matched their personal experience. Scenarios were constructed based on combinations of perceived disease activity (very active – flares and remission, rarely flaring, long term remission) and impact on quality of life (QoL).
Results: A total of 3,978 SLE participants living in Europe with an average age of 45.8 years (± 12.6) participated in this section of the study. 152 (3.8%) were men, 757 (19.0%) were young (age 18- 35), 544 (13.7%) seniors (>60 years), and 985 (24.8%) had lupus nephritis. Out of these 3978 respondents, four distinct groups of patients emerged: 1223 patients (30.7%) identified their lupus as very active, 1388 (34.9%) as a story of flares and remission, 1085 (27.3%) as rarely flaring, and 282 (7.1%) see their lupus in “long term remission, possibly with the use of ongoing medication”. Amongst the cluster that reported “very active lupus”, a majority (63.6%) says lupus is “THE most significant impacting factor on their QoL”, with 393 (32.1% of this group, 9.9% of all respondents) stating they were unable to have an active (professional, study, retirement) life, and 385 (31.5% of this group, 9.7% of the total) still able to handle their obligations despite significant challenges. The balance of the “very active lupus” group says that while lupus significantly impacts their QoL, they can manage most often to have a reasonable QoL. Amongst those in the “flares and remission” cluster, a majority (795, 57.3% of this group, 20.0% of the total) report that “flares are not too frequent, but even when I am not flaring, side effects of my lupus or of medication, anxiety or fatigue are a major burden on my QoL”; 223 (16.1% of group, 5.6% of the total) see flares as frequent and significantly impacting their QoL, while 370 (26.6% of group, 9.3% of the total) say their flares are not too frequent and when not flaring they can have a good life. In the “rarely flaring” cluster, the majority (666, 61.4% of group, 16.7% of the total) say that while their lupus is most often under control, “anxiety, fatigue or concerns over its evolution or side effects/ medication are a significant burden on my quality of life”. The balance of this group 419 (38.6% of group, 10.5% of the total) acknowledge they can “live a normal life”. The final group of 282 patients considering themselves in remission view their lupus as “not a significant burden on their QoL”. Overall, across all self-reported disease activity clusters, lupus was reported as “a significant, very significant or the most significant impact on their QoL” for 2514 (63.2%) of participants.
Conclusion: Almost 2/3 rd of patients consider lupus as a “significant”, “very significant” or “the most significant impact” on their QoL. Significant impairment in QoL was seen in all three major self-reported disease activity categories: “very active”, “flares and remission” and “rarely flaring/inactive”. No proposed “lupus experience scenario” combining activity and impact on life included more than 20% of the patients, confirming that lupus, as a heterogeneous disease, also has a heterogeneous impact on life.
REFERENCES: NIL.
Acknowledgements: NIL.
Disclosure of Interests: None declared.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (