Validación del LupusQoL en Venezuela: una medida específica de la calidad de vida en pacientes con lupus eritematoso sistémico / Validation of the LupusQoL in Venezuela: A Specific Measurement of Quality of Life in Patients with Systemic Lupus Erythematosus

Antecedentes y objetivos: Tradicionalmente, la calidad de vida relacionada con la salud (CVRS) de los pacientes con lupus eritematoso sistémico (LES) ha sido evaluada utilizando instrumentos que desatienden las características específicas de la enfermedad. Este estudio determina la validez del cuestionario Lupus Quality of Life (LupusQoL) como instrumento psicométricamente estable para medir la CVRS de los pacientes con LES en Venezuela, y establece los puntos de corte del cuestionario para la población venezolana. Pacientes y métodos: Se realizó un estudio de corte transversal que incluyó pacientes con LES desde abril hasta julio de 2018. Los pacientes completaron el LupusQoL y la escala Generalitat de Catalunya (GENCAT); se obtuvieron los datos sociodemográficos, índices de actividad (SLEDAI) y daño acumulado (SLICC). Se evaluó la fiabilidad mediante consistencia interna y se determinó la validez convergente del LupusQoL con la escala GENCAT. Resultados: De los 100 pacientes, el 93% eran mujeres, la media de edad fue de 42años (DE: 13) y la media de duración de la enfermedad fue de 11años (DE: 9); la media de SLEDAI y SLICC fue de 3 y 1, respectivamente. El punto de corte que definió una «mejor» o «peor» CVRS para el LupusQoL fue 64,55 puntos. Se encontró una convergencia moderada posterior a la agrupación, según los puntos de corte, del LupusQoL con la escala GENCAT (coeficiente kappa de Cohen=0,556; p=0,000). Conclusiones: El LupusQoL es válido como instrumento psicométricamente estable para medir la CVRS de los pacientes con LES en Venezuela. Se establecieron los puntos de corte que permiten estratificar la CVRS de los pacientes venezolanos con LES, siendo de utilidad para complementar una evaluación integral.(AU)

Background and objectives: Traditionally, the health-related quality of life (HRQoL) of patients with systemic lupus erythematosus (SLE) has been assessed using instruments that neglect the specific characteristics of the disease. This study determines the validity of the Lupus Quality of Life (LupusQoL) questionnaire as a psychometrically stable instrument to measure the HRQoL of patients with SLE in Venezuela and establishes the cutoff points of the questionnaire for the Venezuelan population. Patients and methods: A cross-sectional study was conducted that included patients with SLE from April to July 2018. Patients completed the LupusQoL and the Generalitat de Catalunya (GENCAT) scale; sociodemographic data, activity index (SLEDAI) and accumulated damage (SLICC), were obtained. Reliability was evaluated by internal consistency and the convergent validity of the LupusQoL was determined with the GENCAT scale. Results: Of the 100 patients, 93% were women, the mean age was 42years old (SD: 13) and the mean duration of the disease was 11years (SD: 9); the mean of SLEDAI and SLICC was 3 and 1, respectively. The cutoff point that defined a “better” or “worse” HRQoL for LupusQoL was 64.55 points. A moderate convergence was found after grouping, according to the cutoff points, of the LupusQoL with the GENCAT scale (Cohen's kappa coefficient=.556; p=.000). Conclusions: The LupusQoL is a valid psychometrically stable instrument to measure the HRQoL of patients with SLE in Venezuela. Cutoff points were established to stratify the HRQoL in the Venezuelan population with LES, being useful to complement a comprehensive evaluation.(AU)

Impact of demographic, clinical, and treatment compliance characteristics on quality of life of Venezuelan patients with systemic lupus erythematosus.

BACKGROUND: We have here assessed the impact of demographic, clinical, and treatment compliance characteristics on health-related quality of life (HRQoL) of Venezuelan patients with systemic lupus erythematosus (SLE). We have used a disease-specific questionnaire, the Lupus Quality of Life (LupusQoL), validated in our patient population, to measure HRQoL. METHODS: A cross-sectional study was conducted among 100 patients with SLE from outpatient clinics. Patients completed a form with demographic, clinical, and treatment compliance data, and the LupusQoL questionnaire. HRQoL was classified as better or worse according to previously established cut-off points for this patient population. Spearman's r test was used to determine the correlations between age, years of education, disease duration, SLEDAI, and SLICC-DI with the eight domains of the LupusQoL. Mann-Whitney U test was used to compare the HRQoL between the two groups of patients according to treatment compliance. Binomial logistic regression using the backward stepwise selection method was performed to identify the risk factors associated with each of the eight domains of the LupusQoL among patients with inactive (SLEDAI < 4) and active (SLEDAI ≥ 4) SLE. RESULTS: HRQoL of our patients was classified as better in all domains of the LupusQoL. Age correlated negatively with all domains of the LupusQoL, except with "burden to others", and disease activity correlated negatively with all domains of the LupusQoL, except with "intimate relationships" and "burden to others" (p < 0.05). Patients who fully complied with indicated treatment had higher scores in "physical health" domain compared to patients who did not comply with at least one of the prescribed medications (p < 0.05). In patients with active SLE, a risk factor associated with worse "planning" and "intimate relationships" was advanced age, while having had SLE flare-ups in the previous six months was a risk factor associated with worse "physical health" (p < 0.05). CONCLUSION: Age and disease activity were negatively correlated with almost all domains of the LupusQoL, and treatment compliance was associated with higher score in the "physical health" domain. Disease control and treatment compliance should be the main goals for a better HRQoL in our patients with SLE.

Antibodies: Friends, Foes, or Both? Lessons From COVID-19 for the Rheumatologist.

ABSTRACT: Antibodies are a fundamental tool to fight infections but are intrinsically built as a double-edged sword. One side recognizes the microbial antigen, and the other gives a call to arms to fight infection by recruiting immune cells and triggering inflammation. A balanced immune response must combine a potent neutralizing antibody and a swift disposal of the invading agent by innate immune cells with the least tissue damage possible. The longer the immune system takes to control the infection, the higher the possibility for a self-sustaining inflammatory process with potentially fatal consequences for the host. In addition to quantity, the quality of antibodies also matters, because posttranslational modifications altering the N-glycan composition in Fc fractions may help tilt the balance to the effector side, by modifying their affinity for Fc receptors in immune cells. The COVID-19 pandemic has provided a wealth of data bolstering our understanding of the rules governing the production of protective and nonprotective antibodies. Also, it has broadened our understanding of the role of viruses in triggering autoimmunity and inflammation, and widened our knowledge of the different mechanisms that can be activated by viral infection and lead to autoantibody production, inflammation, and progressive tissue damage. In addition, the COVID-19 infection has contributed a great deal to our comprehension of the role of antibodies in the causation of cytokine storms and systemic inflammatory response syndrome, also seen in patients with systemic autoimmune diseases.

Validation of the LupusQoL in Venezuela: A specific measurement of quality of life in patients with systemic lupus erythematosus.

BACKGROUND AND OBJECTIVES: Traditionally, the health-related quality of life (HRQoL) of patients with systemic lupus erythematosus (SLE) has been assessed using instruments that neglect the specific characteristics of the disease. This study determines the validity of the Lupus Quality of Life (LupusQoL) questionnaire as a psychometrically stable instrument to measure the HRQoL of patients with SLE in Venezuela and establishes the cutoff points of the questionnaire for the Venezuelan population. PATIENTS AND METHODS: A cross-sectional study was conducted that included patients with SLE from April to July 2018. Patients completed the LupusQoL and the "Generalitat de Catalunya" (GENCAT) scale; sociodemographic data, activity index (SLEDAI) and accumulated damage (SLICC), were obtained. Reliability was evaluated by internal consistency and the convergent validity of the LupusQoL was determined with the GENCAT scale. RESULTS: Of the 100 patients, 93% were women, the mean age was 42 years old (SD: 13) and the mean duration of the disease was 11 years (SD: 9); the mean of SLEDAI and SLICC was 3 and 1, respectively. The cutoff point that defined a "better" or "worse" HRQoL for LupusQoL was 64.55 points. A moderate convergence was found after grouping, according to the cutoff points, of the LupusQoL with the GENCAT scale (Cohen's kappa coefficient = .556; p = .000). CONCLUSIONS: The LupusQoL is a valid psychometrically stable instrument to measure the HRQoL of patients with SLE in Venezuela. Cutoff points were established to stratify the HRQoL in the Venezuelan population with LES, being useful to complement a comprehensive evaluation.

Impact of COVID-19 pandemic on patients with rheumatic diseases in Latin America.

The objective of our study was to describe knowledge, attitudes and practices of Latin-American rheumatology patients regarding management and follow-up of their disease during COVID-19 pandemic. A cross-sectional observational study was conducted using a digital anonymous survey. Rheumatic patients ≥ 18 years from non-English-speaking PANLAR countries were included. Our survey included 3502 rheumatic patients living in more than 19 Latin-American countries. Median age of patients was 45.8(36-55) years and the majority (88.9%) was female. Most frequently self-reported disease was rheumatoid arthritis (48.4%). At least one anti-rheumatic treatment was suspended by 23.4% of patients. Fear of contracting SARS-Cov2 (27.7%) and economic issues (25%) were the most common reasons for drug discontinuation. Self-rated disease activity increased from 30 (7-50) to 45 (10-70) points during the pandemic. Communication with their rheumatologist during the pandemic was required by 55.6% of patients, mainly by telephone calls (50.2%) and social network messages (47.8%). An adequate knowledge about COVID-19 was observed in 43% of patients. Patients with rheumatic diseases in Latin America were negatively affected by the COVID-19 pandemic. An increase in self-rated disease activity, a reduction in medication adherence, and hurdles for medical follow-up were reported. Teleconsultation was perceived as a valid alternative to in-person visits during the pandemic.

Impact of COVID-19 Pandemic on Rheumatology Practice in Latin America.

OBJECTIVE: To describe the effect of the coronavirus disease 2019 (COVID-19) pandemic on Latin American rheumatologists from a professional, economic, and occupational point of view. METHODS: We conducted an observational cross-sectional study using an online survey sent to rheumatologists of each non-English-speaking country member of the Pan American League of Rheumatology Associations (PANLAR). A specific questionnaire was developed. RESULTS: Our survey included 1097 rheumatologists from 19 Latin American countries. Median (IQR) age of respondents was 48 (40-59) years and 618 (56.3%) were female. Duration of practice since graduation as a rheumatologist was 17 years, and 585 (53.3%) were aged < 50 years. Most rheumatologists worked in private practice (81.8%) and almost half worked in institutional outpatient centers (55%) and inpatient care (49.9%). The median number of weekly hours (IQR) of face-to-face practice before the pandemic was 27 (15-40) hours, but was reduced to 10 (5-20) hours during the pandemic. Telehealth was used by 866 (78.9%) respondents during the pandemic. Most common methods of communication were video calls (555; 50.6%), telephone calls (499; 45.5%), and WhatsApp voice calls (423; 38.6%). A reduction in monthly wages was reported by 946 (86.2%) respondents. Consultation fees also were reduced and 88 (8%) rheumatologists stated they had lost their jobs. A reduction in patient adherence to medication was reported by nearly 50% of respondents. Eighty-one (7.4%) rheumatologists received a COVID-19 diagnosis and 7 (8.6%) of them were hospitalized. CONCLUSION: The COVID-19 pandemic has reshaped rheumatology practice in Latin America and has had a profound effect on rheumatologists' behaviors and clinical practice.

Validation of the LupusQoL in Venezuela: A Specific Measurement of Quality of Life in Patients with Systemic Lupus Erythematosus. / Validación del LupusQoL en Venezuela: una medida específica de la calidad de vida en pacientes con lupus eritematoso sistémico.

BACKGROUND AND OBJECTIVES: Traditionally, the health-related quality of life (HRQoL) of patients with systemic lupus erythematosus (SLE) has been assessed using instruments that neglect the specific characteristics of the disease. This study determines the validity of the Lupus Quality of Life (LupusQoL) questionnaire as a psychometrically stable instrument to measure the HRQoL of patients with SLE in Venezuela and establishes the cutoff points of the questionnaire for the Venezuelan population. PATIENTS AND METHODS: A cross-sectional study was conducted that included patients with SLE from April to July 2018. Patients completed the LupusQoL and the Generalitat de Catalunya (GENCAT) scale; sociodemographic data, activity index (SLEDAI) and accumulated damage (SLICC), were obtained. Reliability was evaluated by internal consistency and the convergent validity of the LupusQoL was determined with the GENCAT scale. RESULTS: Of the 100 patients, 93% were women, the mean age was 42years old (SD: 13) and the mean duration of the disease was 11years (SD: 9); the mean of SLEDAI and SLICC was 3 and 1, respectively. The cutoff point that defined a "better" or "worse" HRQoL for LupusQoL was 64.55 points. A moderate convergence was found after grouping, according to the cutoff points, of the LupusQoL with the GENCAT scale (Cohen's kappa coefficient=.556; p=.000). CONCLUSIONS: The LupusQoL is a valid psychometrically stable instrument to measure the HRQoL of patients with SLE in Venezuela. Cutoff points were established to stratify the HRQoL in the Venezuelan population with LES, being useful to complement a comprehensive evaluation.

Cluster analysis reveals three main patterns of beliefs and intention with respect to SARS-CoV-2 vaccination in patients with autoimmune and inflammatory diseases.

INTRODUCTION: Given the COVID-19 pandemic, it is crucial to understand the underlying behavioural determinants of SARS-CoV-2 vaccine hesitancy in patients with autoimmune or inflammatory rheumatic diseases (AIIRDs). We aimed to analyse patterns of beliefs and intention regarding SARS-CoV-2 vaccination in AIIRD patients, as a mean of identifying pragmatic actions that could be taken to increase vaccine coverage in this population. METHODS: Data relating to 1258 AIIRD patients were analysed using univariate and multivariate logistic regression models, to identify variables associated independently with willingness to get vaccinated against SARS-CoV-2. Subsets of patients showing similar beliefs and intention about SARS-CoV-2 vaccination were characterized using cluster analysis. RESULTS: Hierarchical cluster analysis identified three distinct clusters of AIIRD patients. Three predominant patient attitudes to SARS-COV-2 vaccination were identified: voluntary, hesitant and suspicious. While vaccine willingness differed significantly across the three clusters (P < 0.0001), there was no significant difference regarding fear of getting COVID-19 (P = 0.11), the presence of comorbidities (P = 0.23), the use of glucocorticoids (P = 0.21), or immunocompromised status (P = 0.63). However, patients from cluster #2 (hesitant) and #3 (suspicious) were significantly more concerned about vaccination, the use of a new vaccine technology, lack of long-term data in relation to COVID-19 vaccination, and potential financial links with pharmaceutical companies (P < 0.0001 in all) than patients from cluster #1 (voluntary). DISCUSSION: Importantly, the differences between clusters in terms of patient beliefs and intention was not related to the fear of getting COVID-19 or to any state of frailty, but was related to specific concerns about vaccination. This study may serve as a basis for improved communication and thus help increase COVID-19 vaccine coverage among AIIRD patients.

Relación entre los factores sociodemográficos y la calidad de vida en pacientes con lupus eritematoso sistémico / Relationship between sociodemographic factors and the quality of life in patients with systemic lupus erythematosus

El lupus eritematoso sistémico (LES) es una enfermedad autoinmune que puede tener repercusiones negativas en la calidad de vida (CV) de quienes la padecen. La CV puede verse influida por factores sociodemográficos (FSD) relacionados con la enfermedad en sí. Objetivo: Determinar la relación entre los FSD y la CV en pacientes con LES. Métodos: Estudio descriptivo, de corte transversal, de campo y observacional, donde se evaluaron 100 pacientes con diagnóstico de LES. Se emplearon dos encuestas: una para la recolección de datos sociodemográficos y el formulario de la Escala GENCAT. Resultados: La edad promedio fue 42,9 años ± 13,5, el sexo más afectado fue femenino con 93%, los años de estudio promedio fueron 11,4 años ± 4,4 y el tiempo de evolución del LES promedio fue 11,1 años ± 9,5. La CV según el formulario de la Escala GENCAT fue aceptable; la edad avanzada y mayor tiempo de evolución de LES se asoció con menor CV, y mayor escolaridad se asoció con mayor CV. Conclusiones: La CV fue aceptable según la Escala GENCAT, y se encontraron asociaciones entre la CV y edad, años de estudio y tiempo de evolución del LES que fueron estadísticamente significativas(AU)

Systemic lupus erythematosus (SLE) is an autoimmune disease that can have a negative impact on the quality of life (QoL) of those who suffer from it. QoL may be influenced by sociodemographic factors (SDF) related to the disease itself. Objective: Determine the relationship between the SDF and the QoL in patients with SLE. Methods: Descriptive, cross-sectional, field and observational study, where 100 patients with a diagnosis of SLE were evaluated. Two surveys were used: one for the collection of sociodemographic data and the GENCAT Scale form. Results: The average age was 42.9 years ± 13.5, the most affected sex was female with 93%, the average study years were 11.4 years ± 4.4 and the evolution time of the average SLE was 11.1 year ± 9.5. TheQoL according to the GENCAT Scale form was acceptable; the advanced age and longer time of evolution of SLE was associated with lower QoL, and higher schooling was associated with higher QoL. Conclusions: The QoL was acceptable according to the GENCAT Scale, and associations were found between the QoL and age, years of study and time of evolution of the disease, which were statistically significant(AU)

First Latin American clinical practice guidelines for the treatment of systemic lupus erythematosus: Latin American Group for the Study of Lupus (GLADEL, Grupo Latino Americano de Estudio del Lupus)-Pan-American League of Associations of Rheumatology (PANLAR).

Systemic lupus erythematosus (SLE), a complex and heterogeneous autoimmune disease, represents a significant challenge for both diagnosis and treatment. Patients with SLE in Latin America face special problems that should be considered when therapeutic guidelines are developed. The objective of the study is to develop clinical practice guidelines for Latin American patients with lupus. Two independent teams (rheumatologists with experience in lupus management and methodologists) had an initial meeting in Panama City, Panama, in April 2016. They selected a list of questions for the clinical problems most commonly seen in Latin American patients with SLE. These were addressed with the best available evidence and summarised in a standardised format following the Grading of Recommendations Assessment, Development and Evaluation approach. All preliminary findings were discussed in a second face-to-face meeting in Washington, DC, in November 2016. As a result, nine organ/system sections are presented with the main findings; an 'overarching' treatment approach was added. Special emphasis was made on regional implementation issues. Best pharmacologic options were examined for musculoskeletal, mucocutaneous, kidney, cardiac, pulmonary, neuropsychiatric, haematological manifestations and the antiphospholipid syndrome. The roles of main therapeutic options (ie, glucocorticoids, antimalarials, immunosuppressant agents, therapeutic plasma exchange, belimumab, rituximab, abatacept, low-dose aspirin and anticoagulants) were summarised in each section. In all cases, benefits and harms, certainty of the evidence, values and preferences, feasibility, acceptability and equity issues were considered to produce a recommendation with special focus on ethnic and socioeconomic aspects. Guidelines for Latin American patients with lupus have been developed and could be used in similar settings.