An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences

OBJECTIVES: A survey conducted by the Spanish Lupus Federation (FELUPUS) shows the results on perceptions and experiences of the people who live with lupus in Spain. The information was gathered anonymously from May 21(st) to June 30(th), 2020. The aim of the study was to monitor the impact of the disease on quality of life, as well as to measure the impact of organ damage in lupus patients. METHODS: A national survey was conducted among people with lupus living in Spain who belong to the Spanish Lupus Patient Association (FELUPUS). Online interviews of approximately 25 min were completed. The information was gathered anonymously from May 21(st) to June 30(th), 2020. RESULTS: One thousand two hundred sixty-three interviews were completed. 92% had a diagnosis of Systemic Lupus Erythematosus (SLE) and 8% of Cutaneous Lupus Erythematosus (CLE); 95% of the patients surveyed were female. Most of the patients claimed they stay up late, exercising and work/study were the most limited actions due to the disease. 73% of patients considered that there was little knowledge of the disease by society and at the time of diagnosis, the patient’s level of knowledge about lupus was low in 92% of them. Regarding organ damage, many patients did not understand the concept of chronicity and irreversibility of the term, relating it erroneously to acute symptoms like fatigue (38%), joint pain (47%) and even to the presence of cutaneous symptoms such as the presence of oral ulcers (17%). CONCLUSIONS: The survey highlighted the need for disease awareness campaigns, greater involvement of healthcare professionals and the need to provide more information to lupus patients from the time of diagnosis. Nationally and to our knowledge, this is the survey with the largest number of participants (N = 1263) conducted in patients with lupus. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s10067-023-06500-3.