AB1653-PARE LACK OF AWARENESS OF SYSTEMIC LUPUS ERYTHEMATOSUS AND ITS CONSEQUENCES ON A COHORT OF MODERATE AND SEVERE PATIENTS IN SPAIN: THE LUPUSVOICE STUDY
Authors: M. Galindo Izquierdo, J. Borrás Blasco, S. Pérez Ortega, T. C. Salman-Monte, P. Vela Casasempere, E. Rodríguez Almaraz, J. Calvo Alén, J. M. Alvaro-Gracia, J. Barbado Ajo, R. Rubio Renau, M. Galvez-Fernandez, N. Bahamontes Rosa, J. Sánchez-Covisa Hernández, C. Solà Marsiñach
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Systemic lupus erythematosus (SLE) is an autoimmune condition that can highly impact patients' quality of life (QoL). However, there is a lack of knowledge about SLE, affecting the general population and health care professionals alike.[1] This lack of knowledge has negative implications for patients and the healthcare system, worsening prognosis, negatively impacting QoL, and increasing healthcare utilization [1,2]. <h3>Objectives:</h3> The aim of this study was to draw attention to the lack of awareness of SLE and its consequences in Spain. <h3>Methods:</h3> The LupusVoice Study was a qualitative, descriptive, observational, multicenter, and cross-sectional study that aimed to describe the experiences of patients and their caregivers dealing with SLE and the perceptions of SLE specialized clinicians. For this analysis 40 SLE patients and 9 SLE physicians from six different hospitals in Spain were interviewed. Participants partook in 2-hour long remote semi-structured interviews, which allowed participants to raise issues of concern while simultaneously covering the study's areas of interest. Interviews were recorded and data were coded and analyzed thematically by two anthropologists following a phenomenological perspective to elucidate the lived experience of SLE. The analytical process was both inductive and deductive: themes were identified by topics emerging directly from the data and from applying prior knowledge. Only themes that reached empirical saturation were selected for analysis. Due to the large number of themes that emerged from the study, this communication solely focuses on those related to the lack of SLE awareness. <h3>Results:</h3> The study identified a lack of disease awareness among primary care physicians, emergency medicine doctors and other specialists treating SLE symptomatology. This led to diagnostic delays, which negatively impacted patients' QoL. While doctors focused on the clinical consequences of a delayed diagnosis, patients prioritized the emotional ones: distrust in doctors and the healthcare system and a negative impact on their emotional wellbeing. Additionally, patients did not consider diagnostic delays only in terms of time spent to reach a diagnosis, but also according to the number of times they had to visit their doctor, and the amount of effort required to convince them that something was not right. Furthermore, symptom awareness was found to be context-dependent: neurological dysfunction had the greatest impact on the QoL of patients with intellectually demanding jobs, whereas pain and fatigue had the greatest impact on the QoL of patients with physically demanding jobs. Differences in symptom awareness between doctors and patients led to a mismatch between the severity evaluation made by each. Some doctors did not consider the limitations of the current severity evaluation of SLE, and therefore attributed symptoms potentially caused by SLE to the patients' unfavorable socioeconomic conditions instead, contributing to the stigmatization of patients from low socioeconomic backgrounds. Finally, a lack of social awareness among friends, family members and partners led to lower social support, increased isolation and negative physical and emotional impact for patients. <h3>Conclusion:</h3> This study highlights the need to increase SLE awareness among patients, doctors and the broader public in order to improve patients' lived experience of SLE. Being mindful of the clinical and emotional impact of such lack of awareness, as well as the impact of patients' contexts on their experience with SLE, is a crucial step towards achieving this goal. <h3>REFERENCES:</h3> [1] Salman-Monte TC, Fanlo Mateo P, Galindo Izquierdo M, et al. An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences. Clin Rheumatol. 2023;42:1259-65. [2] Kernder A, Richter JG, Fischer-Betz R, et al. Delayed diagnosis adversely affects outcome in systemic lupus erythematosus: cross sectional analysis of the LuLa cohort. Lupus. 2021;30:431-8. <h3>Acknowledgements:</h3> We would like to thank all study participants for kindly sharing their experiences with us. We also extend our gratitude to the study coordinators, who ensured the Lupus Voice Study was smoothly executed. <h3>Disclosure of Interests:</h3> Maria Galindo Izquierdo: None declared, Joaquín Borrás Blasco: None declared, Silvia Pérez Ortega: None declared, Tarek Carlos Salman-Monte: None declared, Paloma Vela Casasempere: None declared, Esther Rodríguez Almaraz has received honoraria from GSK, Jaime Calvo Alén: None declared, Jose-Maria Alvaro-Gracia: None declared, Julia Barbado Ajo: None declared, Raül Rubio Renau is an employee of A Piece of Pie, a consulting firm hired by AstraZeneca to assist with The LupusVoice study, Marta Galvez-Fernandez is an employee of AstraZeneca, Noemí Bahamontes Rosa is an employee of AstraZeneca, Joaquín Sánchez-Covisa Hernández is an employee of AstraZeneca, Carlota Solà Marsiñach is an employee of A Piece of Pie, a consulting firm hired by AstraZeneca to assist with The LupusVoice study.