80 research outputs found

    Identificación de los aspectos culturales que influyen en la baja comunicación asertiva al interior de las familias

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    Encuesta, Imagenes de las comunidadesSon diversas las problemáticas que padecen las familias en la actualidad y cada vez son mayores las demandas de soluciones para atenderlas, ya sea con el fin de recuperar su estructura, funcionalidad o de garantizar el cumplimiento de su objetivo social. Es así, que desde la investigación acción participativa, se realizaron diferentes actividades con el fin de conocer cuales problemáticas se presentaban en las familias de nuestra comunidad y cuál de estas era más relevante, de lo que obtuvimos como resultado una amplia y nutrida investigación, donde se determinó que la principal problemática era la falta de comunicación asertiva, que a su vez era la causa de otras problemáticas como la violencia, maltrato, separaciones, entre otras. Una vez identificada esta problemática, se realizó un acercamiento e investigación más profunda de la misma, utilizando para ello instrumentos como la encuesta y la observación, siempre teniendo en cuenta la participación de la comunidad objeto. Posteriormente, se detectaron los aspectos culturales relacionados con la falta de comunicación asertiva al interior de las familias y se creó una propuesta de intervención encaminada al fortalecimiento de las habilidades comunicativas y a la generación de estrategias para generar una mejor comunicación al interior del núcleo familiar, a través de la integración de sus miembros y el fortalecimiento de vínculos.Are various issues faced by families today and there are increasing demands for solutions to address them, either in order to regain their structure, function or ensure compliance with its social objective. Thus, since the participatory action research, various activities were carried out in order to know which issues were presented to the families of our community and which of these was most important, what we got as a result a wide and nourished research where it was determined that the main problem was the lack of assertive communication, which in turn was causing other problems such as violence, abuse, separation, among others. Once identified this problem, an approach and further investigation of it was conducted, using instruments such as the survey and observation, taking into account the participation of the community object. Subsequently, the cultural aspects related to the lack of assertive communication within families and a proposal for intervention aimed at strengthening communication skills and the creation of strategies to generate better communication within the family nucleus, created detected Through the integration of its members and strengthening links

    Association Between Race/Ethnicity and COVID-19 Outcomes in Systemic Lupus Erythematosus Patients From the United States: Data From the COVID-19 Global Rheumatology Alliance

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    OBJECTIVE: To determine the association between race/ethnicity and COVID-19 outcomes in individuals with systemic lupus erythematosus (SLE). METHODS: Individuals with SLE from the US with data entered into the COVID-19 Global Rheumatology Alliance registry between March 24, 2020 and August 27, 2021 were included. Variables included age, sex, race, and ethnicity (White, Black, Hispanic, other), comorbidities, disease activity, pandemic time period, glucocorticoid dose, antimalarials, and immunosuppressive drug use. The ordinal outcome categories were: not hospitalized, hospitalized with no oxygenation, hospitalized with any ventilation or oxygenation, and death. We constructed ordinal logistic regression models evaluating the relationship between race/ethnicity and COVID-19 severity, adjusting for possible confounders. RESULTS: We included 523 patients; 473 (90.4%) were female and the mean ± SD age was 46.6 ± 14.0 years. A total of 358 patients (74.6%) were not hospitalized; 40 patients (8.3%) were hospitalized without oxygen, 64 patients (13.3%) were hospitalized with any oxygenation, and 18 (3.8%) died. In a multivariable model, Black (odds ratio [OR] 2.73 [95% confidence interval (95% CI) 1.36–5.53]) and Hispanic (OR 2.76 [95% CI 1.34–5.69]) individuals had higher odds of more severe outcomes than White individuals. CONCLUSION: Black and Hispanic individuals with SLE experienced more severe COVID-19 outcomes, which is consistent with findings in the US general population. These results likely reflect socioeconomic and health disparities and suggest that more aggressive efforts are needed to prevent and treat infection in this population

    Glucocorticoid use and factors associated with variability in this use in the Systemic Lupus International Collaborating Clinics Inception Cohort

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    To describe glucocorticoid (GC) use in the SLICC inception cohort and to explore factors associated with GC use. In particular we aimed to assess temporal trends in GC use and to what extent physician-related factors may influence use. Patients were recruited within 15 months of diagnosis of SLE from 33 centres between 1999 and 2011 and continue to be reviewed annually. Descriptive statistics were used to detail oral and parenteral GC use. Cross sectional and longitudinal analyses were performed to explore factors associated with GC use at enrolment and over time. We studied 1700 patients with a mean (s.d.) follow-up duration of 7.26 (3.82) years. Over the entire study period, 1365 (81.3%) patients received oral GCs and 447 (26.3%) received parenteral GCs at some point. GC use was strongly associated with treatment centre, age, race/ethnicity, sex, disease duration and disease activity. There was no change in the proportion of patients on GCs or the average doses of GC used over time according to year of diagnosis. GCs remain a cornerstone in SLE management and there have been no significant changes in their use over the past 10-15 years. While patient and disease factors contribute to the variation in GC use, between-centre differences suggest that physician-related factors also contribute. Evidence-based treatment algorithms are needed to inform a more standardized approach to GC use in SL

    Association of genetic variants in complement factor H and factor H-related genes with systemic lupus erythematosus susceptibility

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    Systemic lupus erythematosus (SLE), a complex polygenic autoimmune disease, is associated with increased complement activation. Variants of genes encoding complement regulator factor H (CFH) and five CFH-related proteins (CFHR1-CFHR5) within the chromosome 1q32 locus linked to SLE, have been associated with multiple human diseases and may contribute to dysregulated complement activation predisposing to SLE. We assessed 60 SNPs covering the CFH-CFHRs region for association with SLE in 15,864 case-control subjects derived from four ethnic groups. Significant allelic associations with SLE were detected in European Americans (EA) and African Americans (AA), which could be attributed to an intronic CFH SNP (rs6677604, in intron 11, Pmeta = 6.6×10-8, OR = 1.18) and an intergenic SNP between CFHR1 and CFHR4 (rs16840639, Pmeta = 2.9×10-7, OR = 1.17) rather than to previously identified disease-associated CFH exonic SNPs, including I62V, Y402H, A474A, and D936E. In addition, allelic association of rs6677604 with SLE was subsequently confirmed in Asians (AS). Haplotype analysis revealed that the underlying causal variant, tagged by rs6677604 and rs16840639, was localized to a ~146 kb block extending from intron 9 of CFH to downstream of CFHR1. Within this block, the deletion of CFHR3 and CFHR1 (CFHR3-1Δ), a likely causal variant measured using multiplex ligation-dependent probe amplification, was tagged by rs6677604 in EA and AS and rs16840639 in AA, respectively. Deduced from genotypic associations of tag SNPs in EA, AA, and AS, homozygous deletion of CFHR3-1Δ (Pmeta = 3.2×10-7, OR = 1.47) conferred a higher risk of SLE than heterozygous deletion (Pmeta = 3.5×10-4, OR = 1.14). These results suggested that the CFHR3-1Δ deletion within the SLE-associated block, but not the previously described exonic SNPs of CFH, might contribute to the development of SLE in EA, AA, and AS, providing new insights into the role of complement regulators in the pathogenesis of SLE

    El futuro después del COVID-19

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    El libro reúne ensayos de 27 autoras y autores en el contexto del inicio de la pandemia del Covid-19. Plantea diagnósticos, analiza dimensiones sociales, políticas y culturales. Y ofrece un panorama plural del debate en un momento de emergencia.Fil: Follari, Roberto Agustin. Universidad Nacional de Cuyo; Argentina. Universidad Nacional de la Patagonia "San Juan Bosco"; ArgentinaFil: Canelo, Paula Vera. Universidad Nacional de San Martín. Instituto de Altos Estudios Sociales; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas. Oficina de Coordinación Administrativa Saavedra 15. Centro de Innovación de los Trabajadores. Universidad Metropolitana para la Educación y el Trabajo. Centro de Innovación de los Trabajadores; ArgentinaFil: Sztulwark, Diego. Universidad de Buenos Aires; ArgentinaFil: Palermo, Vicente Antonio. Universidad de Buenos Aires. Facultad de Ciencias Sociales. Instituto de Investigaciones "Gino Germani"; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; ArgentinaFil: González, Horacio. Universidad de Buenos Aires; Argentina. Universidad Nacional de Rosario; ArgentinaFil: Tokatlian, Juan Gabriel. Universidad de San Andrés; Argentina. Universidad Nacional de Colombia; Colombia. Universidad de los Andes; ColombiaFil: Forster, Ricardo. Universidad Nacional de Córdoba; ArgentinaFil: Fidanza, Eduardo. Academia Nacional de Periodismo; ArgentinaFil: Boron, Atilio Alberto. Universidad de Buenos Aires. Facultad de Ciencias Sociales. Instituto de Estudios de América Latina y el Caribe; Argentina. Universidad Nacional de Avellaneda; Argentina. Universidad de Buenos Aires. Facultad de Ciencias Sociales; ArgentinaFil: Segato, Rita Laura. Unesco; Argentina. Universidad de Brasilia; BrasilFil: Rebón, Julián. Universidad de Buenos Aires. Centro de Estudios Avanzados; Argentina. Universidad de Buenos Aires. Facultad de Ciencias Sociales. Instituto de Investigaciones "Gino Germani"; Argentina. Consejo Latinoamericano de Ciencias Sociales; ArgentinaFil: Svampa, Maristella Noemi. Universidad Nacional de La Plata; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; ArgentinaFil: Viale, Enrique. Asociación Argentina de Abogados Ambientalistas; ArgentinaFil: Carreiras, Helena. Instituto Universitario de Lisboa; Portugal. Instituto de Defensa Nacional de Portugal; PortugalFil: Malamud, Andrés. University of Maryland; Estados Unidos. Max-planck-institut Für Europäische Rechtsgeschichte.; AlemaniaFil: Sarlo Sabajanes, Beatriz Ercilia. Columbia University; Estados Unidos. Universidad de Buenos Aires; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; ArgentinaFil: Barrancos, Dora Beatriz. Universidad de Buenos Aires. Facultad de Filosofía y Letras. Instituto Interdisciplinario de Estudios de Género; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; ArgentinaFil: Waisbord, Silvio Ricardo. The George Washington University; Estados Unidos. University of Pennsylvania; Estados UnidosFil: Casullo, María Esperanza. Universidad Nacional de Río Negro; Argentina. University of Richmond; Estados Unidos. University Brown; Estados UnidosFil: Mignolo, Walter. University of Duke; Estados UnidosFil: Valdettaro, Sandra Catalina. Universidad Nacional de Rosario; Argentina. Universidad Nacional de Rosario. Facultad de Humanidades y Artes. Centro de Estudios Culturales Urbanos; ArgentinaFil: Alarcon, Cristian Francisco. Universidad Nacional de San Martín; ArgentinaFil: López, María Pia Luján. No especifíca;Fil: Moreno, María. No especifíca;Fil: Maffía, Diana. Universidad de Buenos Aires. Facultad de Filosofía y Letras; ArgentinaFil: Giunta, Andrea Graciela. Universidad de Buenos Aires. Facultad de Filosofía y Letras. Instituto de Teoría e Historia del Arte "Julio E. Payró"; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; ArgentinaFil: Cabezón Cámara, Gabriela. University of California at Berkeley; Estados Unidos. Universidad Nacional de las Artes; ArgentinaFil: Grimson, Alejandro. Universidad Nacional de San Martín. Instituto de Altos Estudios Sociales; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentin

    Retinal toxicity in a multinational inception cohort of patients with systemic lupus on hydroxychloroquine

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    Publisher Copyright: © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.Objective To evaluate hydroxychloroquine (HCQ)-related retinal toxicity in the Systemic Lupus International Collaborating Clinics (SLICC) inception cohort. Methods Data were collected at annual study visits between 1999 and 2019. We followed patients with incident SLE from first visit on HCQ (time zero) up to time of retinal toxicity (outcome), death, loss-to-follow-up or end of study. Potential retinal toxicity was identified from SLICC Damage Index scores; cases were confirmed with chart review. Using cumulative HCQ duration as the time axis, we constructed univariate Cox regression models to assess if covariates (ie, HCQ daily dose/kg, sex, race/ethnicity, age at SLE onset, education, body mass index, renal damage, chloroquine use) were associated with HCQ-related retinal toxicity. Results We studied 1460 patients (89% female, 52% white). Retinal toxicity was confirmed in 11 patients (incidence 1.0 per 1000 person-years, 0.8% overall). Average cumulative time on HCQ in those with retinal toxicity was 7.4 (SD 3.2) years; the first case was detected 4 years after HCQ initiation. Risk of retinal toxicity was numerically higher in older patients at SLE diagnosis (univariate HR 1.05, 95% CI 1.01 to 1.09). Conclusions This is the first assessment of HCQ and retinal disease in incident SLE. We did not see any cases of retinopathy within the first 4 years of HCQ. Cumulative HCQ may be associated with increased risk. Ophthalmology monitoring (and formal assessment of cases of potential toxicity, by a retinal specialist) remains important, especially in patients on HCQ for 10+ years, those needing higher doses and those of older age at SLE diagnosis.Peer reviewe

    2021 DORIS definition of remission in SLE: final recommendations from an international task force.

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    OBJECTIVE: To achieve consensus on a definition of remission in SLE (DORIS). BACKGROUND: Remission is the stated goal for both patient and caregiver, but consensus on a definition of remission has been lacking. Previously, an international task force consisting of patient representatives and medical specialists published a framework for such a definition, without reaching a final recommendation. METHODS: Several systematic literature reviews were performed and specific research questions examined in suitably chosen data sets. The findings were discussed, reformulated as recommendations and voted on. RESULTS: Based on data from the literature and several SLE-specific data sets, a set of recommendations was endorsed. Ultimately, the DORIS Task Force recommended a single definition of remission in SLE, based on clinical systemic lupus erythematosus disease activitiy index (SLEDAI)=0, Evaluator's Global Assessment <0.5 (0-3), prednisolone 5 mg/day or less, and stable antimalarials, immunosuppressives, and biologics. CONCLUSION: The 2021 DORIS definition of remission in SLE is recommended for use in clinical care, education, and research including clinical trials and observational studies

    The global retinoblastoma outcome study : a prospective, cluster-based analysis of 4064 patients from 149 countries

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    DATA SHARING : The study data will become available online once all analyses are complete.BACKGROUND : Retinoblastoma is the most common intraocular cancer worldwide. There is some evidence to suggest that major differences exist in treatment outcomes for children with retinoblastoma from different regions, but these differences have not been assessed on a global scale. We aimed to report 3-year outcomes for children with retinoblastoma globally and to investigate factors associated with survival. METHODS : We did a prospective cluster-based analysis of treatment-naive patients with retinoblastoma who were diagnosed between Jan 1, 2017, and Dec 31, 2017, then treated and followed up for 3 years. Patients were recruited from 260 specialised treatment centres worldwide. Data were obtained from participating centres on primary and additional treatments, duration of follow-up, metastasis, eye globe salvage, and survival outcome. We analysed time to death and time to enucleation with Cox regression models. FINDINGS : The cohort included 4064 children from 149 countries. The median age at diagnosis was 23·2 months (IQR 11·0–36·5). Extraocular tumour spread (cT4 of the cTNMH classification) at diagnosis was reported in five (0·8%) of 636 children from high-income countries, 55 (5·4%) of 1027 children from upper-middle-income countries, 342 (19·7%) of 1738 children from lower-middle-income countries, and 196 (42·9%) of 457 children from low-income countries. Enucleation surgery was available for all children and intravenous chemotherapy was available for 4014 (98·8%) of 4064 children. The 3-year survival rate was 99·5% (95% CI 98·8–100·0) for children from high-income countries, 91·2% (89·5–93·0) for children from upper-middle-income countries, 80·3% (78·3–82·3) for children from lower-middle-income countries, and 57·3% (52·1-63·0) for children from low-income countries. On analysis, independent factors for worse survival were residence in low-income countries compared to high-income countries (hazard ratio 16·67; 95% CI 4·76–50·00), cT4 advanced tumour compared to cT1 (8·98; 4·44–18·18), and older age at diagnosis in children up to 3 years (1·38 per year; 1·23–1·56). For children aged 3–7 years, the mortality risk decreased slightly (p=0·0104 for the change in slope). INTERPRETATION : This study, estimated to include approximately half of all new retinoblastoma cases worldwide in 2017, shows profound inequity in survival of children depending on the national income level of their country of residence. In high-income countries, death from retinoblastoma is rare, whereas in low-income countries estimated 3-year survival is just over 50%. Although essential treatments are available in nearly all countries, early diagnosis and treatment in low-income countries are key to improving survival outcomes.The Queen Elizabeth Diamond Jubilee Trust and the Wellcome Trust.https://www.thelancet.com/journals/langlo/homeam2023Paediatrics and Child Healt
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