BACKGROUND. Although higher prevalence, disease activity, damage accumulation and mortality of systemic lupus erythematosus (SLE) are observed among Latin American, North American admixed population, African descendants and Native Americans, the information about SLE in Latin American countries, such as Mexico, is scarce. OBJECTIVES. To present Lupus RGMX, a multidisciplinary effort to generate a national digital patient registry to enrich the understanding of Mexican people with SLE. METHODS. Mexican patients with SLE registered between May 2021 and January 2023 in Lupus RGMX were included. Sociodemographic, socioeconomic and clinical characteristics, along with quality of life perception (QoL) were assessed using self-reported data. We compared the QoL obtained from patients with SLE with two groups of non-SLE Mexican subjects. Descriptive statistics, comparisons analyses and a multivariate nonparametric regression model were performed. RESULTS. A total of 1172 of lupus patients were included; of which 93.9% were women. The mean age±SD was 36.6±10.7 years, with 37.1% of the individuals between 41 and 50 years. The 24.9% reported a calculated monthly income of 430 USD (8,612 MXN). Lower QoL scores were observed in the SLE group, especially in subjects with lower socioeconomic level. Health perception, QoL perception and socioeconomic status were the variables with greater importance to predict total WHOQoL scores. CONCLUSION. The design and implementation of Lupus RGMX imply a pioneering approach to unraveling SLE in Mexicans. Further studies from Lupus RGMX will be focused on enriching the representation of the Mexican population and include other aspects that may allow us to improve our understanding of the disease in our population.
BackgroundSystemic Lupus Erythematosus (SLE) is a chronic autoimmune disease, characterized by a wide variety of clinical manifestations, as well as continuous relapses and exacerbation of symptoms. This complex panorama complicates an early and proper diagnosis, treatment, and follow-up of the people with SLE and therefore has a significant impact on their health-related quality of life (HRQoL). Although the importance of assessing HRQoL in SLE has become evident in recent years, in Mexico there is no epidemiological surveillance system nor national registry that conveys this information.ObjectivesTo evaluate health related quality of life (HRQoL) in Mexican individuals with SLE using the data from the Mexican Register of Lupus (Lupus RGMX).MethodsThe Mexican Lupus Registry (Lupus RGMX) is an ongoing online register. This cohort includes sociodemographic and clinical data of Mexican individuals with SLE. In this study we assessed and compared HRQoL in patients with SLE and a matched control group of Mexican individuals without SLE diagnosis. We estimated QoL using the World Health Organization Quality of Life (WHOQOL-bref) and Short Form-36 (SF36) questionnaires. For both WHOQOL-bref and SF36, higher scores mean better HRQoL. Statistical analysis was performed using R 4.1.2 (R Core Team, 2021).ResultsA total of 631 SLE and 272 control registers were analyzed (Table 1). Significant lower scores on HRQoL were observed on participants with SLE for both SF36 and WHOQOL-bref questionnaires, compared with the matched control group. All score components were lower in SLE individuals. Physical role functioning, bodily pain and general health exhibited the lowest scores among the SF36 factors, whereas physical factor was the lowest for WHOQOL-bref (Table 1).Table 1.SF36 and WHOQOL-bref median scores (25-75 IQR) of SLE participants and controls.ControlsSLEp-value(n=272)(n=631)Female sex211 (77.6%)596 (94.4%)<0.001n (%)#Age*28 (24-35)35 (28-43)<0.001SF36 (max 100 points per function) *Physical functioning100 (95-100)65 (45-85)<0.001Physical role functioning100 (100-100)25 (0-100)<0.001Bodily pain84 (61-100)31 (22-52)<0.001General health77 (62-100)35 (20-47)<0.001Vitality65 (50-100)40 (25-55)<0.001Social functioning100 (62.5-100)50 (37.5-75)<0.001Emotional role functioning100 (66.7-100)66.7 (0-100)<0.001Mental health76 (60-100)56 (42-74)<0.001WHOQOL-bref (max 20 points per function) *Physical16.6 (14.8-17.7)11.4 (9.1-13.1)<0.001Psychological15.3 (13.3-19.3)12.7 (10.7-14.7)<0.001Social relations14.7 (12-16)12 (9.3-14.7)<0.001Environmental15.5 (14-17)13 (11-15)<0.001# Chi-square test, *U Mann-Whitney testConclusionIn Mexican people with SLE, a significant decrease in HRQoL was detected compared with controls. The implementation of a national register in Mexico (Lupus RGMX) will provide additional psychosocial and clinical information to deepen our knowledge of this disease.References[1]Louthrenoo, W., et al. Arthritis Res Ther 2020; 22, 8.[2]Shi Y, et al. Autoimmun Rev. 2021 Jan;20(1):102691.AcknowledgementsALHL is a doctoral student from Programa de Doctorado en Ciencias Biomédicas, Universidad Nacional Autónoma de México (UNAM) and recieved fellowship 790972 from CONACYT (CVU 711015).AMR was supported by CONACYT-FORDECYT-PRONACES grant no [11311], and Programa de Apoyo a Proyectos de Investigación e Innovación Tecnológica-Universidad Nacional Autónoma de México (PAPIIT-UNAM) grant nos. IA203021Disclosure of InterestsAna Laura Hernández-Ledesma: None declared, Karen Julia Nuñez-Reza: None declared, Andrea Yojany Tapia-Atilano: None declared, Víctor Flores-Ocampo: None declared, Juan Ernesto Villarreal del Moral: None declared, Talía V. Román-López: None declared, Sandra Valentina Vera del Valle: None declared, Donaji Domínguez-Zúñiga: None declared, Estefania Torres-Valdez: None declared, Gabriel Frontana-Vázquez: None declared, Sarael Alcauter: None declared, Miguel Enrique Rentería: None declared, Alejandra Evelyn Ruíz-Contreras: None declared, Deshire Alpizar-Rodriguez Consultant of: Scientific advisor GKS, Alejandra Medina-Rivera: None declared
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