Relación entre los factores sociodemográficos y la calidad de vida en pacientes con lupus eritematoso sistémico

El lupus eritematoso sistémico (LES) es unaenfermedad autoinmune que puede tener repercusionesnegativas en la calidad de vida (CV) dequienes la padecen. La CV puede verse influidapor factores sociodemográficos (FSD) relacionadoscon la enfermedad en sí. Objetivo: Determinarla relación entre los FSD y la CV en pacientes conLES. Métodos: Estudio descriptivo, de corte transversal,de campo y observacional, donde se evaluaron100 pacientes con diagnóstico de LES. Seemplearon dos encuestas: una para la recolecciónde datos sociodemográficos y el formulario de laEscala GENCAT. Resultados: La edad promediofue 42,9 años ± 13,5, el sexo más afectado fuefemenino con 93%, los años de estudio promediofueron 11,4 años ± 4,4 y el tiempo de evolución delLES promedio fue 11,1 años ± 9,5. La CV según elformulario de la Escala GENCAT fue aceptable; laedad avanzada y mayor tiempo de evolución deLES se asoció con menor CV, y mayor escolaridadse asoció con mayor CV. Conclusiones: La CV fueaceptable según la Escala GENCAT, y se encontraronasociaciones entre la CV y edad, años de estudioy tiempo de evolución del LES que fueron estadísticamentesignificativas.Systemic lupus erythematosus (SLE) is anautoimmune disease that can have a negativeimpact on the quality of life (QoL) of those whosuffer from it. QoL may be influenced by sociodemographicfactors (SDF) related to the diseaseitself. Objective: Determine the relationship betweenthe SDF and the QoL in patients with SLE.Methods: Descriptive, cross-sectional, field andobservational study, where 100 patients with adiagnosis of SLE were evaluated. Two surveyswere used: one for the collection of sociodemographicdata and the GENCAT Scale form. Results:The average age was 42.9 years ± 13.5, the mostaffected sex was female with 93%, the averagestudy years were 11.4 years ± 4.4 and the evolutiontime of the average SLE was 11.1 year ± 9.5. TheQoL according to the GENCAT Scale form wasacceptable; the advanced age and longer time ofevolution of SLE was associated with lower QoL,and higher schooling was associated with higherQoL. Conclusions: The QoL was acceptableaccording to the GENCAT Scale, and associationswere found between the QoL and age, yearsof study and time of evolution of the disease, whichwere statistically significant

Guía ¿Es lupus? : educando sobre lupus a médicos de atención primaria y futuros médicos de América Latina

La presente guía no pretende ser un texto sobre lupus sino ayudar a los médicos de atención primaria de la salud, médicos de familia y clínicos a tener conceptos claros para poder sospechar tempranamente esta enfermedad, y así organizar el viaje más adecuado de transferencia con el especialista en el tema, y contratransferencia con el médico de cabecera para evitar consecuencias para las/os pacientes, a veces graves. En enfermedades multisistémicas con manifestaciones tan variadas como el lupus, su reconocimiento no es fácil, particularmente si no se lo sospecha, y el retraso en el diagnóstico es tan frecuente como perjudicial para los pacientes por el daño progresivo que conlleva. Esta guía tiene la característica de estar escrita por reumatólogos o internistas con interés en esta enfermedad que, además, y esto es esencial, tienen interés en la interrelación con los médicos de atención primaria para juntos planificar y establecer estrategias educativas que permitan el diagnóstico temprano y el tratamiento oportuno de los pacientes con una enfermedad tan compleja como es el lupus. De ahí el enfoque práctico. Es posible que algunos capítulos ahonden un poco en algunas áreas, pero la intención es alertar a los médicos que ven primero a estos pacientes, aumentar el índice de sospecha y derivar tempranamente a estos pacientes al especialista. También esperamos que quede claro el rol del médico de cabecera en la atención de estos pacientes y su manejo en conjunto con el reumatólogo o internista especializado para beneficio de los pacientes. Así, capítulos como “¿Qué debe saber el clínico sobre lupus?”, “Derivación oportuna” y, muy fundamentalmente, “Autogestión del paciente con lupus” contribuyen con este objetivo. El empoderamiento de las/os pacientes con lupus es esencial y debe ser reconocido y fomentado por todos nosotros. Esperamos que esta guía sea de ayuda tanto para los médicos que primero ven a estos pacientes como para estudiantes avanzados de medicina.Consejo Nacional de Ciencia y TecnologíaPrograma Paraguayo para el Desarrollo de la Ciencia y Tecnología. Eventos científicos emergente

Long-term safety of COVID vaccination in individuals with idiopathic inflammatory myopathies: results from the COVAD study

Limited evidence on long-term COVID-19 vaccine safety in patients with idiopathic inflammatory myopathies (IIMs) continues to contribute to vaccine hesitancy. We studied delayed-onset vaccine adverse events (AEs) in patients with IIMs, other systemic autoimmune and inflammatory disorders (SAIDs), and healthy controls (HCs), using data from the second COVID-19 Vaccination in Autoimmune Diseases (COVAD) study. A validated self-reporting e-survey was circulated by the COVAD study group (157 collaborators, 106 countries) from Feb-June 2022. We collected data on demographics, comorbidities, IIM/SAID details, COVID-19 history, and vaccination details. Delayed-onset (> 7 day) AEs were analyzed using regression models. A total of 15165 respondents undertook the survey, of whom 8759 responses from vaccinated individuals [median age 46 (35-58) years, 74.4% females, 45.4% Caucasians] were analyzed. Of these, 1390 (15.9%) had IIMs, 50.6% other SAIDs, and 33.5% HCs. Among IIMs, 16.3% and 10.2% patients reported minor and major AEs, respectively, and 0.72% (n = 10) required hospitalization. Notably patients with IIMs experienced fewer minor AEs than other SAIDs, though rashes were expectedly more than HCs [OR 4.0; 95% CI 2.2-7.0, p < 0.001]. IIM patients with active disease, overlap myositis, autoimmune comorbidities, and ChadOx1 nCOV-19 (Oxford/AstraZeneca) recipients reported AEs more often, while those with inclusion body myositis, and BNT162b2 (Pfizer) recipients reported fewer AEs. Vaccination is reassuringly safe in individuals with IIMs, with AEs, hospitalizations comparable to SAIDs, and largely limited to those with autoimmune multimorbidity and active disease. These observations may inform guidelines to identify high-risk patients warranting close monitoring in the post-vaccination period

COVAD survey 2 long-term outcomes: unmet need and protocol

Vaccine hesitancy is considered a major barrier to achieving herd immunity against COVID-19. While multiple alternative and synergistic approaches including heterologous vaccination, booster doses, and antiviral drugs have been developed, equitable vaccine uptake remains the foremost strategy to manage pandemic. Although none of the currently approved vaccines are live-attenuated, several reports of disease flares, waning protection, and acute-onset syndromes have emerged as short-term adverse events after vaccination. Hence, scientific literature falls short when discussing potential long-term effects in vulnerable cohorts. The COVAD-2 survey follows on from the baseline COVAD-1 survey with the aim to collect patient-reported data on the long-term safety and tolerability of COVID-19 vaccines in immune modulation. The e-survey has been extensively pilot-tested and validated with translations into multiple languages. Anticipated results will help improve vaccination efforts and reduce the imminent risks of COVID-19 infection, especially in understudied vulnerable groups

COVAD survey 2 long-term outcomes: unmet need and protocol

Vaccine hesitancy is considered a major barrier to achieving herd immunity against COVID-19. While multiple alternative and synergistic approaches including heterologous vaccination, booster doses, and antiviral drugs have been developed, equitable vaccine uptake remains the foremost strategy to manage pandemic. Although none of the currently approved vaccines are live-attenuated, several reports of disease flares, waning protection, and acute-onset syndromes have emerged as short-term adverse events after vaccination. Hence, scientific literature falls short when discussing potential long-term effects in vulnerable cohorts. The COVAD-2 survey follows on from the baseline COVAD-1 survey with the aim to collect patient-reported data on the long-term safety and tolerability of COVID-19 vaccines in immune modulation. The e-survey has been extensively pilot-tested and validated with translations into multiple languages. Anticipated results will help improve vaccination efforts and reduce the imminent risks of COVID-19 infection, especially in understudied vulnerable groups

Vaccine hesitancy decreases, long term concerns remain in myositis, rheumatic disease patients: A comparative analysis of the COVAD surveys

Objective: COVID-19 vaccines have a favorable safety profile in patients with autoimmune rheumatic diseases (AIRDs) such as idiopathic inflammatory myopathies (IIMs), however hesitancy continues to persist among these patients.Therefore, we studied the prevalence, predictors, and reasons for hesitancy in patients with IIMs, other AIRDs, non-rheumatic autoimmune diseases (nrAIDs) and healthy controls (HCs), using data from the two international COVID-19 Vaccination in Autoimmune Diseases (COVAD) e-surveys. Methods: The 1st and 2nd COVAD patient self-reported e-surveys were circulated from March to December 2021, and February to June 2022 (ongoing). We collected data on demographics, comorbidities, COVID-19 infection and vaccination history, reasons for hesitancy, and patient reported outcomes. Predictors of hesitancy were analyzed using regression models in different groups. Results: We analyzed data from 18,882 (COVAD-1) and 7666 (COVAD-2) respondents. Reassuringly, hesitancy decreased from 2021 (16.5%) to 2022 (5.1%) [OR 0.26; 95%CI: 0.24-0.30, p < 0.001]. However, concerns/fear over long-term safety had increased [OR 3.6;95% CI:2.9-4.6, p < 0.01].We noted with concern greater skepticism over vaccine science among patients with IIMs than AIRDs [OR:1.8; 95%CI: 1.08-3.2, p = 0.023] and HCs [OR: 4; 95%CI: 1.9-8.1, p < 0.001], as well as more long-term safety concerns/fear [IIMs vs AIRDs; OR: 1.9; 95%CI: 1.2-2.9, p = 0.001; IIMs vs HCs; OR: 5.4 95%CI: 3-9.6), p < 0.001].Caucasians [OR 4.2 (1.7-10.3)] were likely to be more hesitant, while those with better PROMIS physical health score were less hesitant [OR 0.9 (0.8-0.97)]. Conclusion: Vaccine hesitancy has decreased from 2021 to 2022, long-term safety concerns remain among patients with IIMs, particularly in Caucasians and those with poor physical function