Norma de calidad para el manejo del paciente con artritis psoriásica: proyecto QUANTUM / Quality standard for the management of patients with psoriatic arthritis: QUANTUM Project

OBJETIVO: Generar una norma de calidad para el manejo del paciente con artritis psoriásica (APs). MÉTODOS: Metodología cualitativa que incluyó: 1) dos grupos focales (uno con pacientes con APs y otro con especialistas no reumatólogos implicados en su cuidado); 2) revisión de la literatura publicada sobre documentos en el ámbito de la calidad asistencial en APs; 3) reunión de grupo nominal donde 15 expertos reumatólogos generaron, de forma consensuada, una serie de criterios de calidad así como fórmulas o medidas objetivas cuantificables para evaluarlas; 4) Delphi para establecer la factibilidad, prioridad y grado de acuerdo con los criterios de calidad, y 5) generación de estándares de calidad y sus atributos. Se realizó un análisis descriptivo de los resultados. RESULTADOS: Se generaron 59 estándares de calidad, 18 de los cuales de cumplimiento obligatorio, agrupados en 4 bloques según unos objetivos específicos: 1) acortar el tiempo hasta el diagnóstico (n=6); 2) optimizar el manejo de la enfermedad (n=26); 3) mejorar la colaboración multidisciplinar (n=9), y 4) mejorar la monitorización (n=18). Para evaluar el cumplimiento de estos estándares en muchos casos se revisarán las historias clínicas. Otras fuentes serán la memoria del servicio y del hospital así como los buscadores bibliográficos. En cuanto al nivel de exigencia a la hora de considerar por cumplido el estándar, algunos son de tipo sí/no, otros están desde el 50 al 100%, y en este rango muchos en el 80%. CONCLUSIONES: Esta norma de calidad debe ayudar en la mejora de la calidad de atención para el paciente con APs

OBJECTIVE: To generate a quality standard for the management of patients with psoriatic arthritis (PsA). METHODS: We employed qualitative methodology that included: 1) Two focus groups (one with patients with PsA and another with non-rheumatologist specialists involved in the care of PsA patients); 2) A narrative literature review of published documents related to the quality of care in PsA; 3) A nominal group meeting in which 15 expert rheumatologists generated and reached a consensus on a series of quality criteria, as well as formulas or quantifiable objective measures to evaluate them; 4) The Delphi method to establish the feasibility, priority and agreement with the quality criteria; 5) A final generation of standards of care and their attributes. A descriptive analysis of the results was carried out. RESULTS: A total of 59 standards of care was generated, 18 of mandatory compliance, grouped into 4 blocks according to specific objectives: 1) early diagnosis (n=6); 2) optimizing the management of the disease (n=26); 3) multidisciplinary collaboration (n=9); 4) monitoring improvement (n=18). To assess compliance with these standards of care, in many cases, the medical records will be reviewed. Other sources will be the records of the service and hospital and bibliographic databases. Regarding the level of compliance, for some of the standards of care this is yes/no; for others, compliance ranges from 50% to 100% and, in this range, in many cases, compliance was 80%. CONCLUSIONS: This set of standards of care should help improve quality of care in PsA patients

Estado actual de la atención multidisciplinar para pacientes con artritis psoriásica en España: proyecto NEXUS 2.0 / Current status of multidisciplinary care in psoriatic arthritis in Spain: NEXUS 2.0 project

OBJETIVO: 1) Analizar la implementación de los modelos de atención multidisciplinar en pacientes con artritis psoriásica (APs), y 2) definir estándares de calidad de mínimos y de excelencia. MÉTODOS: Se envió una encuesta a profesionales que ya realizan atención multidisciplinar o están en vías preguntando por: 1) tipo de modelo de abordaje multidisciplinar, y 2) grado, prioridad y facilidad de la implementación de los estándares de calidad de estructura, proceso y resultado. En 6 reuniones regionales se presentaron y discutieron los resultados de la encuesta, tanto a nivel nacional como regional, y se definió la prioridad definitiva de los estándares de calidad. En una reunión de grupo nominal, 11 expertos (reumatólogos y dermatólogos) analizaron los resultados de la encuesta y las reuniones regionales. Con ello definieron qué estándares de calidad son actualmente de mínimos y cuáles de excelencia. RESULTADOS: Los modelos de atención multidisciplinar conjunto y paralelo son los más implementados, y los de los estándares de calidad es muy variable: en los de estructura varía del 22 al 74%, en los de proceso del 17 al 54% y en los de resultado del 2 al 28%. De los 25 estándares de calidad originales, 9 se consideran solo de mínimos, 4 de excelencia y 12 tienen definidos unos criterios para ser de mínimos y otros para la excelencia. CONCLUSIONES: La definición de estándares de calidad de mínimos y de excelencia ayudará en la consecución del objetivo de la atención multidisciplinar para pacientes con APs, que es la mejor asistencia sanitaria posible

OBJECTIVE: 1) To analyze the implementation of multidisciplinary care models in psoriatic arthritis (PsA) patients, 2) To define minimum and excellent standards of care. METHODS: A survey was sent to clinicians who already performed multidisciplinary care or were in the process of undertaking it, asking: 1) Type of multidisciplinary care model implemented; 2) Degree, priority and feasibility of the implementation of quality standards in the structure, process and result for care. In 6 regional meetings the results of the survey were presented and discussed, and the ultimate priority of quality standards for care was defined. At a nominal meeting group, 11 experts (rheumatologists and dermatologists) analyzed the results of the survey and the regional meetings. With this information, they defined which standards of care are currently considered as minimum and which are excellent. RESULTS: The simultaneous and parallel models of multidisciplinary care are those most widely implemented, but the implementation of quality standards is highly variable. In terms of structure it ranges from 22% to 74%, in those related to process from 17% to 54% and in the results from 2% to 28%. Of the 25 original quality standards for care, 9 were considered only minimum, 4 were excellent and 12 defined criteria for minimum level and others for excellence. CONCLUSIONS: The definition of minimum and excellent quality standards for care will help achieve the goal of multidisciplinary care for patients with PAs, which is the best healthcare possible

Quality standard for the management of patients with psoriatic arthritis: QUANTUM Project. / Norma de calidad para el manejo del paciente con artritis psoriásica: proyecto QUANTUM.

OBJECTIVE: To generate a quality standard for the management of patients with psoriatic arthritis (PsA). METHODS: We employed qualitative methodology that included: 1) Two focus groups (one with patients with PsA and another with non-rheumatologist specialists involved in the care of PsA patients); 2) A narrative literature review of published documents related to the quality of care in PsA; 3) A nominal group meeting in which 15 expert rheumatologists generated and reached a consensus on a series of quality criteria, as well as formulas or quantifiable objective measures to evaluate them; 4) The Delphi method to establish the feasibility, priority and agreement with the quality criteria; 5) A final generation of standards of care and their attributes. A descriptive analysis of the results was carried out. RESULTS: A total of 59 standards of care was generated, 18 of mandatory compliance, grouped into 4 blocks according to specific objectives: 1) early diagnosis (n=6); 2) optimizing the management of the disease (n=26); 3) multidisciplinary collaboration (n=9); 4) monitoring improvement (n=18). To assess compliance with these standards of care, in many cases, the medical records will be reviewed. Other sources will be the records of the service and hospital and bibliographic databases. Regarding the level of compliance, for some of the standards of care this is yes/no; for others, compliance ranges from 50% to 100% and, in this range, in many cases, compliance was 80%. CONCLUSIONS: This set of standards of care should help improve quality of care in PsA patients.

Current status of multidisciplinary care in psoriatic arthritis in Spain: NEXUS 2.0 project. / Estado actual de la atención multidisciplinar para pacientes con artritis psoriásica en España: proyecto NEXUS 2.0.

OBJECTIVE: 1) To analyze the implementation of multidisciplinary care models in psoriatic arthritis (PsA) patients, 2) To define minimum and excellent standards of care. METHODS: A survey was sent to clinicians who already performed multidisciplinary care or were in the process of undertaking it, asking: 1) Type of multidisciplinary care model implemented; 2) Degree, priority and feasibility of the implementation of quality standards in the structure, process and result for care. In 6 regional meetings the results of the survey were presented and discussed, and the ultimate priority of quality standards for care was defined. At a nominal meeting group, 11 experts (rheumatologists and dermatologists) analyzed the results of the survey and the regional meetings. With this information, they defined which standards of care are currently considered as minimum and which are excellent. RESULTS: The simultaneous and parallel models of multidisciplinary care are those most widely implemented, but the implementation of quality standards is highly variable. In terms of structure it ranges from 22% to 74%, in those related to process from 17% to 54% and in the results from 2% to 28%. Of the 25 original quality standards for care, 9 were considered only minimum, 4 were excellent and 12 defined criteria for minimum level and others for excellence. CONCLUSIONS: The definition of minimum and excellent quality standards for care will help achieve the goal of multidisciplinary care for patients with PAs, which is the best healthcare possible.

Correlation of fatigue with other disease related and psychosocial factors in patients with rheumatoid arthritis treated with tocilizumab: ACT-AXIS study.

To assess the hypothesis if tocilizumab (TCZ) is effective on disease activity, and also its effect in fatigue and other clinical and psychological disease-related factors in patients with rheumatoid arthritis (RA) treated with TCZ.A 24-week, multicenter, prospective, observational study in patients with moderate to severe RA receiving TCZ after failure or intolerance to disease-modifying antirheumatic drugs or tumor necrosis factor-alpha was conducted.Of the 122 patients included, 85 were evaluable for effectiveness (85% female, 51.9 ±â€Š12.5 years, disease duration 8.7 ±â€Š7.4 years). Mean change in C-reactive protein level from baseline to week 12 was -11.2 ±â€Š4.0 (P < .001). Mean Disease Activity Index score (DAS28) decreased from 5.5 ±â€Š1.0 at baseline to 2.7 ±â€Š1.3 (P < .001) at week 24. Mean change in Functional Assessment of Chronic Illness Therapy score was -5.4 ±â€Š11.2 points at week 24. Multiple regression analysis showed that the improvement in DAS28, sleep, and depression explained 56% and 47% of fatigue variance at week 12 and 24, respectively.Tocilizumab is effective in reducing disease activity and results in a clinically significant improvement in fatigue, pain, swollen joint count, morning stiffness, sleepiness, depression, and DAS28; the last 3 were specifically identified as factors explaining fatigue variance with the use of TCZ in RA patients.

Análisis de situación de enfermería: cuidando la familia desde el modelo de adaptación de Roy / Nursing situation analysis: caring for families from the Roy adaptation model / Análise da situação da enfermagem: cuidando a família com base no modelo de adaptação de Roy

Resumen Introducción En el presente escrito se busca articular las necesidades de cuidado que experimenta una familia con hijos adolescentes con los postulados propuestos en el modelo de adaptación de Roy, con el fin de establecer el rol profesional. Materiales y Métodos se realizó el análisis de una situación de enfermería construida desde la vivencia del cuidado familiar, buscando identificar en ella la expresión de elementos del conocimiento disciplinar tales como: el metaparadigma, los patrones del conocimiento, la visión del mundo en la que actúa el profesional de enfermería, las principales necesidades de cuidado y el fundamento del quehacer enfermero a partir de un referente teórico que para el caso es el modelo de adaptación de Roy. Resultados se identificó la falta de comunicación asertiva y la vivencia en contextos de vulnerabilidad como estímulos focales y contextuales que dificultaban el uso adecuado de mecanismos de afrontamiento y condicionantes de la mala adaptación expresada a través de cambios negativos en el autoconcepto y las relaciones de interdependencia en la familia. Discusión y Conclusiones La aplicación de los elementos del conocimiento disciplinar contribuyeron a reconocer la influencia que tienen las características biopsicosociales, culturales y experiencias vividas en cada etapa de la vida en la capacidad de afrontamiento individual y familiar, y cómo, el profesional de enfermería puede establecer un diagnóstico de la calidad de los mecanismos de afrontamiento e identificar aquellos aspectos que deben ser fortalecidos para la adecuada adaptación.

Abstract Introduction This article seeks to articulate care needs experienced by a family with adolescent children with the postulates proposed in the Roy Adaptation Model in order to determine the professional role. Materials and Methods An analysis of the nursing situation built from the experience of family care was conducted, with the aim of identifying the existence of disciplinary knowledge elements such as metaparadigms, knowledge patterns, vision of the world where nursing professionals work, main care needs and the basis of the nursing work from a theoretical reference, that for the case is Roy Adaptation Model. Results A lack of assertive communication and the experience in vulnerability contexts were identified as focal and contextual stimuli that hindered the appropriate use of coping strategies, conditioning of an incorrect adaptation, reflected on negative changes in self-concept and interdependent relations in families. Discussion and Conclusions The implementation of disciplinary knowledge elements contributed to recognizing the influence that biopsychosocial and cultural characteristics, as well as the experiences in each life stage have on the individual and family coping capacity and how nursing professionals can provide diagnosis the quality of the coping mechanisms and to identify those aspects that must be strengthened for its appropriate adaptation.

Resumo Introdução O presente trabalho visa articular as necessidades de cuidado que experimenta uma família com filhos adolescentes usando os postulados propostos no modelo de adaptação de Roy, no intuito de estabelecer o papel do profissional. Materiais e Métodos Foi analisada uma situação de enfermagem construída a partir da vivência do cuidado familiar, procurando identificar nessa vivência a expressão de elementos do conhecimento disciplinar tais como: o metaparadigma, os padrões do conhecimento, a visão do mundo em que atua o profissional de enfermagem, as principais necessidades de cuidado e o fundamento do trabalho de enfermagem com base em um referente teórico que para esse caso é o modelo de adaptação de Roy. Resultados Identificou-se a falta de comunicação assertiva e a vivência em contextos de vulnerabilidade como estímulos focais e contextuais que dificultavam o uso adequado de mecanismos de defesa e condicionantes da má adaptação expressas através de mudanças negativas no autoconceito e nas relações de interdependência na família. Discussão e Conclusões A aplicação dos elementos do conhecimento disciplinar contribuíram para reconhecer a influência das características biopsicossociais, culturais e das experiências vivenciadas em cada etapa da vida a respeito da capacidade de defesa individual e familiar, e como o profissional de enfermagem pode estabelecer um diagnóstico sobre a qualidade dos mecanismos de defesa e identificar aqueles aspectos que devem ser fortalecidos para uma adequada adaptação.

Standards of care and quality indicators for multidisciplinary care models for psoriatic arthritis in Spain.

To define and give priority to standards of care and quality indicators of multidisciplinary care for patients with psoriatic arthritis (PsA). A systematic literature review on PsA standards of care and quality indicators was performed. An expert panel of rheumatologists and dermatologists who provide multidisciplinary care was established. In a consensus meeting group, the experts discussed and developed the standards of care and quality indicators and graded their priority, agreement and also the feasibility (only for quality indicators) following qualitative methodology and a Delphi process. Afterwards, these results were discussed with 2 focus groups, 1 with patients, another with health managers. A descriptive analysis is presented. We obtained 25 standards of care (9 of structure, 9 of process, 7 of results) and 24 quality indicators (2 of structure, 5 of process, 17 of results). Standards of care include relevant aspects in the multidisciplinary care of PsA patients like an appropriate physical infrastructure and technical equipment, the access to nursing care, labs and imaging techniques, other health professionals and treatments, or the development of care plans. Regarding quality indicators, the definition of multidisciplinary care model objectives and referral criteria, the establishment of responsibilities and coordination among professionals and the active evaluation of patients and data collection were given a high priority. Patients considered all of them as important. This set of standards of care and quality indicators for the multidisciplinary care of patients with PsA should help improve quality of care in these patients.

Modelos de atención multidisciplinar en pacientes con artritis psoriásica en España / Multidisciplinary care models for patients with psoriatic arthritis

Objetivo. Describir la estructura y procesos de distintos modelos de atención multidisciplinar de pacientes con artritis psoriásica (APs) en España, así como las barreras y facilitadores en su implantación. Métodos. Se realizó un estudio cualitativo mediante entrevistas estructuradas a 24 profesionales (12 reumatólogos y 12 dermatólogos que realizan atención multidisciplinar en pacientes con APs). Se recogieron datos relacionados con el centro, servicio, población atendida y sobre el modelo de atención multidisciplinar (tipo, recursos materiales y humanos, requerimientos de los profesionales, objetivos, criterios de entrada y salida, agendas, protocolos de actuación, responsabilidades, toma de decisiones, actividad investigadora y docente, sesiones clínicas conjuntas, creación/inicio, planificación, ventajas/desventajas del modelo y barreras/facilitadores en la implantación del modelo. Se describen sus características. Resultados. Analizamos 12 modelos de atención multidisciplinar en APs, implantados desde hace al menos 1-2 años, que globalmente pueden resumirse en 3 subtipos diferentes: presencial conjunto, presencial paralelo y circuito preferencial. La implantación de uno u otro modelo es consecuencia de la adaptación a las circunstancias del centro y profesionales. Una correcta planificación de la implantación es fundamental. La implicación y buena sintonía entre profesionales así como un acceso y criterios de derivación bien definidos son facilitadores muy importantes en la implantación de un modelo. La gestión de las agendas y la recogida de datos para medir resultados de salud de estos modelos son las principales barreras. Conclusiones. Existen distintos modelos de atención multidisciplinar implantados que tienen como objetivo intentar mejorar la atención del paciente con APs, la eficiencia del sistema y la colaboración entre especialistas (AU)

Objetive. To describe (structure, processes) of the multidisciplinary care models in psoriatic arthritis (PsA) in Spain, as well as barriers and facilitators of their implementation. Methods. A qualitative study was performed following structured interviews with 24 professionals (12 rheumatologists, 12 dermatologists who provide multidisciplinary care for patients with PsA). We collected data related to the hospital, department, population and multidisciplinary care model (type, physical and human resources, professional requirements, objectives, referral criteria, agendas, protocols, responsibilities, decision- making, research and education, clinical sessions, development and planning of the model, advantages and disadvantages of the model, barriers and facilitators in the implementation of the model. The models characteristics are described. Results. We analyzed 12 multidisciplinary care models in PsA, with at least 1-2 years of experience, and 3 subtypes of models, face-to-face, parallel, and preferential circuit. All are adapted to the hospital and professionals characteristics. A proper implementation planning is essential. The involvement and empathy between professionals and an access and well-defined referral criteria are important facilitators in the implementation of a model. The management of agendas and data collection to measure the multidisciplinary care models health outcomes are the main barriers. Conclusions. There are different multidisciplinary care models in PsA that can improve patient outcomes, system efficiency and collaboration between specialists (AU)

Multidisciplinary Care Models for Patients With Psoriatic Arthritis. / Modelos de atención multidisciplinar en pacientes con artritis psoriásica en España.

OBJETIVE: To describe (structure, processes) of the multidisciplinary care models in psoriatic arthritis (PsA) in Spain, as well as barriers and facilitators of their implementation. METHODS: A qualitative study was performed following structured interviews with 24 professionals (12 rheumatologists, 12 dermatologists who provide multidisciplinary care for patients with PsA). We collected data related to the hospital, department, population and multidisciplinary care model (type, physical and human resources, professional requirements, objectives, referral criteria, agendas, protocols, responsibilities, decision- making, research and education, clinical sessions, development and planning of the model, advantages and disadvantages of the model, barriers and facilitators in the implementation of the model. The models characteristics are described. RESULTS: We analyzed 12 multidisciplinary care models in PsA, with at least 1-2 years of experience, and 3 subtypes of models, face-to-face, parallel, and preferential circuit. All are adapted to the hospital and professionals characteristics. A proper implementation planning is essential. The involvement and empathy between professionals and an access and well-defined referral criteria are important facilitators in the implementation of a model. The management of agendas and data collection to measure the multidisciplinary care models health outcomes are the main barriers. CONCLUSIONS: There are different multidisciplinary care models in PsA that can improve patient outcomes, system efficiency and collaboration between specialists.

Whole exome sequencing identifies a splicing mutation in NSUN2 as a cause of a Dubowitz-like syndrome.

BACKGROUND: Dubowitz syndrome (DS) is an autosomal recessive disorder characterized by the constellation of mild microcephaly, growth and mental retardation, eczema and peculiar facies. Over 140 cases have been reported, but the genetic basis is not understood. METHODS: We enrolled a multiplex consanguineous family from the United Arab Emirates with many of the key clinical features of DS as reported in previous series. The family was analyzed by whole exome sequencing. RNA splicing was evaluated with reverse-transcriptase PCR, immunostaining and western blotting was performed with specific antibodies, and site-specific cytosine-5-methylation was studied with bisulfite sequencing. RESULTS: We identified a homozygous splice mutation in the NSUN2 gene, encoding a conserved RNA methyltransferase. The mutation abolished the canonical splice acceptor site of exon 6, leading to use of a cryptic splice donor within an AluY and subsequent mRNA instability. Patient cells lacked NSUN2 protein and there was resultant loss of site-specific 5-cytosine methylation of the tRNA(Asp GTC) at C47 and C48, known NSUN2 targets. CONCLUSION: Our findings establish NSUN2 as the first causal gene with relationship to the DS spectrum phenotype. NSUN2 has been implicated in Myc-induced cell proliferation and mitotic spindle stability, which might help explain the varied clinical presentation in DS that can include chromosomal instability and immunological defects.

Abordaje Interdisciplinario de la Salud y la Enfermedad: Aportes a la Enfermería / Interdisciplinary boarding of the health and the disease: Contributions to the nursing

El artículo tiene como objeto introducirse en la discusión iniciada los años setenta por la Antropología médica y más adelante, por la Sociología sobre las diferencias que existen entre las conceptualizaciones de la salud y la enfermedad definidas por el saber médico o biomédico y las construidas por el saber propio de las comunidades o colectivos desde sus acervos culturales y las condiciones materiales en las que viven. Lo anterior, como un derrotero que debe tenerse en cuenta en el quehacer de Enfermería, como disciplina que cuida la experiencia de salud en un contexto que no se puede definir como neutro, sino influenciado por la cultura, la política y la economía de una sociedad en un momento histórico dado. Además, se presentan algunas de las consideraciones respecto a la importancia para la disciplina de tener en cuenta las construcciones en torno a la salud y la enfermedad de los sujetos de cuidado (AU)

The present paper has as object to be introduced in the old discussion initiated in the Seventies by the medical Anthropology and more ahead, by the Sociology about the differences that exist between planning’s of the health and the disease that have been defined by the medical or biomedical knowledge and the planning that have been constructed by the own knowledge of the communities or the groups from their cultural heaps and the material conditions in which they live. The previous thing, like a map course that nursing task must consider, like discipline that tries to take care of the experience of health in a context that cannot be defined as neutral, but is influenced by the culture, the policy and the economy of a society in a historical moment dice. By this, some of the considerations with respect to the importance for the discipline appear of considering the constructions surroundings to the health and the disease of the care subjects (AU)

Modelo estructural de las secuencias cretácico-terciarias a nivel del boque B del área Sur del Lago de Maracaibo Venzuela / Structural model of the terciary cretacic sequences in block b of the southern area of lake Maracaibo, Venezuela

El objetivo de este estudio fue caracterizar los principales estilos estructurales (geometrías, tendencias estructurales y evolución tectónica) que involucran rocas cretáceas y terciarias a nivel del bloque “B”, área Sur del Lago de Maracaibo, estado Zulia, Venezuela. La metodología se fundamentó en los siguientes pasos: realizar un inventario de la data disponible (registros de pozos, sísmica 3D, trabajos geológicos de carácter regional), elaboración de un sismograma sintético, identificación de secuencias estratigráficas, elaboración de secciones sísmico-estructurales, y generación de mapas estructurales. El modelo presenta una diversidad de estilos estructurales sobreimpuestos con una tendencia estructural NE-SW, con buzamientos SSE, desarrollados en distintas fases que varían desde el Jurásico tardío hasta el Mioceno. La secuencia de formación es: fallamiento normal asociado a un régimen tectónico extensivo (Jurásico tardío-Cretáceo superior), formación de planos de despegues y sistemas de fallas inversas, fallas invertidas y fallas rumbo-deslizantes sinestrales con componente normal y efectos de sinsedimentación (ej. Falla Lama-Icotea) asociados a un periodo de inversión tectónica por transpresión (Paleógeno-Neógeno), y colapsos estructurales asociados con altas tasas de sedimentación y aumento de carga litostática (Neógeno).