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BACKGROUND/OBJECTIVE: The Latin American population living with lupus lacks reliable and culturally competent health education resources. We describe a Spanish and Portuguese online program to educate Latin American people about lupus. METHODS: An extensive network of Latin American stakeholders participated in the program design, implementation, dissemination, and evaluation. Patients and rheumatologists selected core topics. Rheumatologists prepared the content using evidence-based data. Adaptations were conducted to meet the audience's health literacy and cultural values. Social media was used to post audiovisual resources and facilitate users' interactions with peers and educators, and a Web site was created to offer in-depth knowledge. RESULTS: The most massive outreach was through Facebook, with more than 20 million people reached and 80,000 followers at 3 months, between the Spanish and Portuguese pages. Nearly 90% of followers were from Latin America. A high engagement and positive responses to a satisfaction survey indicate that Facebook users valued these resources. The Spanish and Portuguese Web sites accumulated more than 62,000 page views, and 71.7% of viewers were from Latin American. CONCLUSIONS: The engagement of patients and stakeholders is critical to provide and disseminate reliable lupus education. Social media can be used to educate and facilitate interactions between people affected by lupus and qualified health care professionals. Social media-based health education has extensive and scalable outreach but is more taxing for the professional team than the Web site. However, the Web site is less likely to be used as a primary education source by Latin American people because they value social interactions when seeking lupus information.
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Mídias Sociais , Pessoal de Saúde , Humanos , América LatinaRESUMO
Introduction: After more than 20 years of sustained work, the Latin American Group for the Study of Lupus (GLADEL) has made a significant number of contributions to the field of lupus, not only in the differential role that race/ethnicity plays in its course and outcome but also in several other studies including the beneficial effects of using antimalarials in lupus patients and the development of consensus guidelines for the treatment of lupus in our region. Methods: A new generation of "Lupus Investigators" in more than 40 centers throughout Latin America has been constituted in order to continue the legacy of the investigators of the original cohort and to launch a novel study of serum and urinary biomarkers in patients with systemic lupus erythematosus. Results: So far, we have recruited 807 patients and 631 controls from 42 Latin-American centers including 339 patients with SLE without renal involvement, 202 patients with SLE with prevalent but inactive renal disease, 176 patients with prevalent and active renal disease and 90 patients with incident lupus nephritis. Conclusions: The different methodological aspects of the GLADEL 2.0 cohort are discussed in this manuscript, including the challenges and difficulties of conducting such an ambitious project.
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BACKGROUND: It has long been established that obesity plays a positive role against osteoporosis (OP) and low-impact fractures (Fx). However, more recent data has shown higher fracture risk in obese individuals. The aim of this study was to investigate the association between BMI, particularly obesity, OP and low-impact Fx in Brazilian women, as well as to evaluate the SAPORI (Sao Paulo Osteoporosis Risk Index) tool performance to identify low BMD according BMI category. METHODS: A total of 6182 women aged over 40 years were included in this cross-sectional analysis using data from two large Brazilian studies. All participants performed hip and spine bone mineral density (BMD) measurements and answered a detailed questionnaire about the presence of clinical risk factors (CRFs) related to low BMD and risk fractures. The World Health Organization (WHO) criteria were used to define obesity. RESULTS: Age-adjusted osteoporosis prevalence was 20.8, 33.6, 47 and 67.1% in obese, overweight, normal and underweight category, respectively. Obesity was present in 29,6% (1.830 women) in the study population and the likelihood of osteoporosis and low-impact Fx compared to a normal BMI in this subgroup was of 0.24 (95% CI 0.20-0.28; p < 0.001) and of 1.68 (95% CI 1.35-2.11; p < 0.001), respectively. However, the hip Fx likelihood was lower in obese compared with non-obese women (OR = 0.44; 95% CI 0.20-0.97). Using an originally validated cut-off, the SAPORI tool sensitivity was significantly hampered in overweight and obese women although the accuracy had remained suitable because of increasing in specificity. CONCLUSIONS: The osteoporosis prevalence reduced as BMI increased and obesity was associated with low-impact Fx, regardless of the BMD measurements. Moreover, the SAPORI performance was impaired in obese women.