RESUMEN
The Spanish Society of Rheumatology (SER) brings together the majority of Spain's rheumatologists and, among the many services it offers its members, has a Research Unit (RU). This unit provides methodological support to SER members in clinical and epidemiological research, coordinates and carries out research projects, designs and maintains large patient databases, develops qualitative research projects and produces evidence-based medicine (EBM) documents. Through this last activity, the RU of the SER produces clinical practice guidelines and recommendation documents on topics relevant to rheumatology that meet the most demanding methodological standards. The aim of this article is to describe the management process and methodology followed by the UI of the SER to identify the topics of its EBM documents and how it executes and develops its guidelines and recommendations.
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Guías de Práctica Clínica como Asunto , Reumatología , Sociedades Médicas , Reumatología/normas , España , Humanos , Medicina Basada en la Evidencia/normasRESUMEN
Objetivo: Elaborar recomendaciones multidisciplinares, basadas en la evidencia disponible y el consenso de expertos, para el manejo terapéutico de los pacientes con síndrome de Behçet refractario (difícil de tratar, resistente grave, recidivante grave) al tratamiento convencional. Métodos: Un panel de expertos identificó preguntas clínicas de investigación relevantes para el objetivo del documento. Estas preguntas fueron reformuladas en formato PICO paciente, intervención, comparación, outcome o desenlace. A continuación, se realizaron revisiones sistemáticas; la evaluación de la calidad de la evidencia se realizó siguiendo la metodología del grupo internacional de trabajo Grading of Recommendations, Assessment, Development, and Evaluation. Tras esto, el panel multidisciplinar formuló las recomendaciones. Resultados: Se seleccionaron 4 preguntas PICO relativas a la eficacia y seguridad de los tratamientos farmacológicos sistémicos en los pacientes con síndrome de Behçet con manifestaciones clínicas refractarias a terapia convencional, relacionadas con los fenotipos mucocutáneo y/o articular, vascular, neurológico-parenquimatoso y gastrointestinal. Se formularon un total de 7 recomendaciones estructuradas por pregunta, con base en la evidencia encontrada y el consenso de expertos. Conclusiones: El tratamiento de las manifestaciones clínicas más graves del síndrome de Behçet carece de evidencia científica sólida y no existen documentos de recomendaciones específicas para los pacientes con enfermedad refractaria a la terapia convencional. Con el fin de aportar una respuesta a esta necesidad, se presenta el primer documento de recomendaciones de la Sociedad Española de Reumatología específicas para el abordaje terapéutico de estos pacientes, que servirá de ayuda en la toma de decisiones clínica y la reducción de la variabilidad en la atención.(AU)
Objective: To develop multidisciplinary recommendations based on available evidence and expert consensus for the therapeutic management of patients with refractory Behçet's syndrome (difficult to treat, severe resistant, severe relapse) to conventional treatment. Methods: A group of experts identified clinical research questions relevant to the objective of the document. These questions were reformulated in PICO format patient, intervention, comparison and outcome. Systematic reviews of the evidence were conducted; the quality of the evidence was evaluated following the methodology of the international working group Grading of Recommendations, Assessment, Development, and Evaluation. After that, the multidisciplinary panel formulated the specific recommendations. Results: Four PICO questions were selected regarding the efficacy and safety of systemic pharmacological treatments in patients with Behçet's syndrome with clinical manifestations refractory to conventional therapy related to mucocutaneous and/or articular, vascular, neurological parenchymal and gastrointestinal phenotypes. A total of 7 recommendations were made, structured by question, based on the identified evidence and expert consensus. Conclusions: The treatment of most severe clinical manifestations of Behçet's syndrome lacks solid scientific evidence and, besides, there are no specific recommendation documents for patients with refractory disease. With the aim of providing a response to this need, here we present the first official recommendations of the Spanish Society of Rheumatology for the management of these patients. They are devised as a tool for assistance in clinical decision making, therapeutic homogenisation and to reduce variability in the care of these patients.(AU)
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Humanos , Masculino , Femenino , Síndrome de Behçet/tratamiento farmacológico , Protocolos Clínicos , Fenotipo , Síndrome de Behçet/diagnóstico , Síndrome de Behçet/etiología , TerapéuticaRESUMEN
OBJECTIVE: To develop multidisciplinary recommendations based on available evidence and expert consensus for the therapeutic management of patients with refractory Behçet's syndrome (BS) (difficult to treat, severe resistant, severe relapse) to conventional treatment. METHODS: A group of experts identified clinical research questions relevant to the objective of the document. These questions were reformulated in PICO format (patient, intervention, comparison and outcome). Systematic reviews of the evidence were conducted, the quality of the evidence was evaluated following the methodology of the international working group Grading of Recommendations Assessment, Development, and Evaluation (GRADE). After that, the multidisciplinary panel formulated the specific recommendations. RESULTS: 4 PICO questions were selected regarding the efficacy and safety of systemic pharmacological treatments in patients with BS with clinical manifestations refractory to conventional therapy related to mucocutaneous and/or articular, vascular, neurological parenchymal and gastrointestinal phenotypes. A total of 7 recommendations were made, structured by question, based on the identified evidence and expert consensus. CONCLUSIONS: The treatment of most severe clinical manifestations of BS lacks solid scientific evidence and, besides, there are no specific recommendation documents for patients with refractory disease. With the aim of providing a response to this need, here we present the first official Recommendations of the Spanish Society of Rheumatology for the management of these patients. They are devised as a tool for assistance in clinical decision making, therapeutic homogenisation and to reduce variability in the care of these patients.
Asunto(s)
Síndrome de Behçet , Síndrome de Behçet/tratamiento farmacológico , Humanos , Inmunosupresores/uso terapéuticoRESUMEN
OBJETIVE: The aim of this study was to conduct an exhaustive synthesis to determine which instruments and variables are most appropriate to evaluate foster care programs (foster, kinship, and professional families). This evaluation includes the children, their foster families, their families of origin, professionals, and foster care technicians. METHOD: The systematic review included randomized, quasi-randomized, longitudinal, and control group studies aimed at evaluating foster care interventions. RESULTS: A total of 86 studies, 138 assessment instruments, 18 constructs, and 73 independent research teams were identified. CONCLUSIONS: (1) although the object of the evaluations was the children, the informants were usually the people in charge of their care; therefore, effort should be made to involve the children in a more participatory way; (2) psychosocial functioning, behavior, and parenting are transversal elements in most evaluations, while quality of life and coping are not sufficiently well incorporated; (3) practical instruments (brief and easy to apply and correct) that are widely used and carry scientific guarantees should be prioritized to ensure the comparability and reliability of the conclusions; and (4) progress should be made in the study of evaluation models for all forms of foster care, including foster, extended, and specialized families.
OBJETIVO: El objetivo es realizar una síntesis exhaustiva que contribuya a determinar qué instrumentos y variables son las más adecuadas para evaluar programas de acogimiento familiar (familias extensas, ajenas y profesionalizadas), incluyendo en esta evaluación a los niños, sus familias acogedoras, sus familias de origen y a los profesionales y técnicos del acogimiento familiar. Método: La revisión sistemática incluyó estudios aleatorizados, cuasialeatorizados, longitudinales y con grupo control dirigidos a evaluar intervenciones de acogimiento familiar. RESULTADOS: Se identificaron 86 estudios, 138 instrumentos de evaluación, 18 constructos y 73 equipos de investigación independientes. CONCLUSIONES: (1) aunque el objeto de las evaluaciones sean los niños, habitualmente los informantes son las personas a cargo de sus cuidados, con lo que se debe hacer un esfuerzo por involucrarlos de forma más participativa; (2) el funcionamiento psicosocial, el comportamiento o la parentalidad son elementos transversales en la mayor parte de evaluaciones, sin embargo la calidad de vida y el afrontamiento no están suficientemente bien incorporados; (3) deben priorizarse instrumentos prácticos (breves y fáciles de aplicar y corregir), de amplio uso y con garantías científicas para asegurar la comparabilidad y fiabilidad de las conclusiones; (4) debe avanzarse en la investigación de modelos de evaluación en todas las modalidades de acogimiento familiar, ya sea en familias ajenas, extensas o especializadas.
Asunto(s)
Cuidados en el Hogar de Adopción , Calidad de Vida , Niño , Humanos , Reproducibilidad de los Resultados , Cuidados en el Hogar de Adopción/psicología , Responsabilidad Parental/psicología , Habilidades de AfrontamientoRESUMEN
Objetive: The aim of this study was to conduct an exhaustive synthesis to determine which instruments and variables are most appropriate to evaluate foster care programs (foster, kinship, and professional families). This evaluation includes the children, their foster families, their families of origin, professionals, and foster care technicians. Method: The systematic review included randomized, quasi-randomized, longitudinal, and control group studies aimed at evaluating foster care interventions. Results: A total of 86 studies, 138 assessment instruments, 18 constructs, and 73 independent research teams were identified. Conclusions: (1) although the object of the evaluations was the children, the informants were usually the people in charge of their care; therefore, effort should be made to involve the children in a more participatory way; (2) psychosocial functioning, behavior, and parenting are transversal elements in most evaluations, while quality of life and coping are not sufficiently well incorporated; (3) practical instruments (brief and easy to apply and correct) that are widely used and carry scientific guarantees should be prioritized to ensure the comparability and reliability of the conclusions; and (4) progress should be made in the study of evaluation models for all forms of foster care, including foster, extended, and specialized families.(AU)
Objetivo: El objetivo es realizar una síntesis exhaustiva que contribuya a determinar qué instrumentos y variables son las más adecuadas para evaluar programas de acogimiento familiar (familias extensas, ajenas y profesionalizadas), incluyendo en esta evaluación a los niños, sus familias acogedoras, sus familias de origen y a los profesionales y técnicos del acogimiento familiar. Método: La revisión sistemática incluyó estudios aleatorizados, cuasialeatorizados, longitudinales y con grupo control dirigidos a evaluar intervenciones de acogimiento familiar. Resultados: Se identificaron 86 estudios, 138 instrumentos de evaluación, 18 constructos y 73 equipos de investigación independientes. Conclusiones: (1) aunque el objeto de las evaluaciones sean los niños, habitualmente los informantes son las personas a cargo de sus cuidados, con lo que se debe hacer un esfuerzo por involucrarlos de forma más participativa; (2) el funcionamiento psicosocial, el comportamiento o la parentalidad son elementos transversales en la mayor parte de evaluaciones, sin embargo la calidad de vida y el afrontamiento no están suficientemente bien incorporados; (3) deben priorizarse instrumentos prácticos (breves y fáciles de aplicar y corregir), de amplio uso y con garantías científicas para asegurar la comparabilidad y fiabilidad de las conclusiones; (4) debe avanzarse en la investigación de modelos de evaluación en todas las modalidades de acogimiento familiar, ya sea en familias ajenas, extensas o especializadas.(AU)
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Humanos , Masculino , Femenino , Niño , Adolescente , Acogimiento , Niño Acogido , Evaluación de Programas y Proyectos de Salud , Jóvenes sin Hogar , Sistemas de Apoyo PsicosocialRESUMEN
INTRODUCTION: Glucocorticoids are associated with serious side effects related to dosing and time of use. Unfortunately, there is no standard method for determining glucocorticoid exposure, especially in patients undergoing long-term treatment. OBJECTIVE: The aim of this work was to create a free and easy-to-use web application to calculate, in a systematic way, the total cumulative dose of corticosteroids. METHODS: The total cumulative dose is calculated as the sum of all periods of treatment with different doses of corticosteroids, and is expressed as the equivalent dose of prednisone in mg. Glucocorticoid doses during periods in which the available information is missing or incomplete are estimated by systematic assumptions. RESULTS: A simulation exercise using standard patterns of steroid use in polymyalgia rheumatica, and giant cell arteritis showed that even when the period of no information reached 50% of the time, the accuracy of the calculator had a mean absolute percentage error (MAPE)<7%. CONCLUSION: This tool simplifies and standardizes the glucocorticoids cumulative dose calculation, thereby minimizing bias in the assessment of glucocorticoid cumulative dose.
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Arteritis de Células Gigantes , Polimialgia Reumática , Humanos , Glucocorticoides/uso terapéutico , Prednisona/efectos adversos , Arteritis de Células Gigantes/tratamiento farmacológico , Polimialgia Reumática/tratamiento farmacológicoRESUMEN
Introduction: Glucocorticoids are associated with serious side effects related to dosing and time of use. Unfortunately, there is no standard method for determining glucocorticoid exposure, especially in patients undergoing long-term treatment. Objective: The aim of this work was to create a free and easy-to-use web application to calculate, in a systematic way, the total cumulative dose of corticosteroids. Methods: The total cumulative dose is calculated as the sum of all periods of treatment with different doses of corticosteroids, and is expressed as the equivalent dose of prednisone in mg. Glucocorticoid doses during periods in which the available information is missing or incomplete are estimated by systematic assumptions. Results: A simulation exercise using standard patterns of steroid use in polymyalgia rheumatica, and giant cell arteritis showed that even when the period of no information reached 50% of the time, the accuracy of the calculator had a mean absolute percentage error (MAPE)<7%. Conclusion: This tool simplifies and standardizes the glucocorticoids cumulative dose calculation, thereby minimizing bias in the assessment of glucocorticoid cumulative dose.(AU)
Introducción: Los glucocorticoides se asocian con efectos secundarios graves, relacionados con dosis y tiempo de uso. Desafortunadamente, no existe un método estándar disponible para determinar el nivel de exposición a glucocorticoides en tratamientos prolongados. Objetivo: Crear una aplicación web gratuita y fácil de usar para calcular, de forma sistematizada, la dosis acumulada de glucocorticoides. Métodos: La dosis acumulada se calcula como la suma de todos los períodos de tratamiento con diferentes dosis, y se expresa como la dosis equivalente de prednisona en mg. La dosis durante los períodos en los que la información no está disponible o está incompleta se estima mediante asunciones sistematizadas. Resultados: Un ejercicio de simulación utilizando patrones estándar de uso de esteroides en la polimialgia reumática y la arteritis de células gigantes demostró que, incluso cuando el período de ausencia de información alcanzaba el 50% del tiempo, la precisión de la calculadora tenía un porcentaje de error medio absoluto (MAPE)<7%. Conclusión: Esta herramienta simplifica y estandariza el cálculo de la dosis acumulativa de glucocorticoides, minimizando el sesgo del cálculo.(AU)
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Dosificación , Corticoesteroides , Glucocorticoides , Aplicaciones Móviles , Reumatología , Enfermedades ReumáticasRESUMEN
Objetivos: La enfermedad pulmonar intersticial difusa (EPID) es una manifestación frecuente en pacientes con artritis reumatoide (AR) y asocia una gran morbimortalidad. El objetivo de esta revisión fue identificar los distintos métodos de cribado de EPID en pacientes con AR. Métodos: Se realizó una búsqueda sistemática en Pubmed, Embase y Cochrane Library hasta abril de 2020 y una búsqueda manual en la bibliografía de los artículos recuperados. Se limitó a estudios en humanos y artículos publicados en inglés, francés o español. Se seleccionaron estudios de cualquier diseño en los que: a) la población a estudiar fuesen pacientes adultos con AR; b) la intervención consistiese en cualquier método de cribado de EPID; y c) se evaluase la validez o fiabilidad del método de cribado, o se describiesen criterios de cribado. Dos revisoras realizaron la selección por título y abstract de forma independiente y posteriormente extrajeron la información utilizando plantillas específicas. Resultados: Se incluyeron 25 estudios con un total de 2.593 pacientes. La herramienta más frecuentemente utilizada para el cribado de EPID fue la tomografía computarizada de alta resolución (TCAR) pulmonar. También se evaluaron la auscultación electrónica, los marcadores bioquímicos, el lavado broncoalveolar (LBA), las pruebas de función respiratoria (PFR) y la ecografía pulmonar. En los diferentes estudios, la auscultación electrónica y la ecografía pulmonar alcanzaron mayor precisión que las PFR, el LBA y los marcadores bioquímicos. Conclusiones: La TCAR ha demostrado ser la técnica más sensible para el cribado de EPID en pacientes con AR. Dada su inocuidad y su alta sensibilidad, es posible que la ecografía pulmonar se posicione como técnica de elección en un futuro.(AU)
Aims: Interstitial lung disease (ILD) is frequent in patients with rheumatoid arthritis (RA) and is associated with significant morbidity and mortality. The aim of this review was to identify the different screening methods for ILD in patients with RA. Methods: We ran a systematic search in Pubmed, Embase and Cochrane Library up to April 2020 and did a hand search of the references of the retrieved articles. The search was limited to humans and articles published in English, Spanish or French. We selected studies with any design where: a) the population included adult patients with RA; b) the intervention was any screening method for ILD; and c) validity or reliability of the screening method were evaluated, or a screening method was described. Two reviewers independently screened the articles by title and abstract and subsequently extracted the information using a specific data extraction form. Results: 25 studies were included with a total of 2,593 patients. The most frequently used tool for ILD screening was high resolution computed tomography (HRCT) of the lung. Electronic auscultation, biochemical markers, bronchoalveolar lavage (BAL), pulmonary function tests (PFTs) and lung ultrasonography were also evaluated. Across the different studies, electronic auscultation and lung ultrasonography achieved higher accuracy than PFTs, BAL and biochemical markers. Conclusions: HRCT resulted as the most sensitive tool for ILD screening in patients with RA. Given its harmlessness and high sensitivity, lung ultrasonography may become the first-choice tool in the future.(AU)
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Humanos , Artritis Reumatoide , Enfermedades Pulmonares Intersticiales , Indicadores de Morbimortalidad , Tamizaje Masivo , Reumatología , Enfermedades ReumáticasRESUMEN
AIMS: Interstitial lung disease (ILD) is frequent in patients with rheumatoid arthritis (RA) and is associated with significant morbidity and mortality. The aim of this review was to identify the different screening methods for ILD in patients with RA. METHODS: We ran a systematic search in Pubmed, Embase and Cochrane Library up to April 2020 and did a hand search of the references of the retrieved articles. The search was limited to humans and articles published in English, Spanish or French. We selected studies with any design where: (a) the population included adult patients with RA; (b) the intervention was any screening method for ILD; and (c) validity or reliability of the screening method were evaluated, or a screening method was described. Two reviewers independently screened the articles by title and abstract and subsequently extracted the information using a specific data extraction form. RESULTS: 25 studies were included with a total of 2593 patients. The most frequently used tool for ILD screening was high resolution computed tomography (HRCT) of the lung. Electronic auscultation, biochemical markers, bronchoalveolar lavage (BAL), pulmonary function tests (PFTs) and lung ultrasonography were also evaluated. Across the different studies, electronic auscultation and lung ultrasonography achieved higher accuracy than PFTs, BAL and biochemical markers. CONCLUSIONS: HRCT resulted as the most sensitive tool for ILD screening in patients with RA. Given its harmlessness and high sensitivity, lung ultrasonography may become the first-choice tool in the future.
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Artritis Reumatoide , Enfermedades Pulmonares Intersticiales , Adulto , Humanos , Reproducibilidad de los Resultados , Enfermedades Pulmonares Intersticiales/etiología , Enfermedades Pulmonares Intersticiales/complicaciones , Artritis Reumatoide/complicaciones , Pulmón , BiomarcadoresRESUMEN
Objective: Evaluate the evidence on the abnormalities of the aortic root and heart valves, risk and prognostic factors for heart valve disease and valve replacement surgery in spondyloarthritis. Methods: A systematic literature review was performed using Medline, EMBASE and Cochrane databases until July 2021. Prevalence, incidence, risk and prognostic factors for heart valve disease; dimension, morphology, and pathological abnormalities of the valves were analyzed. Patient characteristics (younger age, history of cardiac disease or longer disease duration) and period of realization were considered for the analysis. The SIGN Approach was used for rating the quality of the evidence of the studies. Results: In total, 37 out of 555 studies were included. Overall, the level of evidence was low. The incidence of aortic insufficiency was 2.5-3.9. Hazard Ratio for aortic insufficiency was 1.8-2.0. Relative risk for aortic valve replacement surgery in ankylosing spondylitis patients was 1.22-1.46. Odds ratio for aortic insufficiency was 1.07 for age and 1.05 for disease duration. Mitral valve abnormalities described were mitral valve prolapse, calcification, and thickening. Aortic valve abnormalities described were calcification, thickening and an echocardiographic "subaortic bump." Abnormalities of the aorta described were thickening of the wall and aortic root dilatation. The most common microscopic findings were scarring of the adventitia, lymphocytic infiltration, and intimal proliferation. Conclusions: A higher prevalence and risk of aortic valve disease is observed in patients with ankylosing spondylitis. Studies were heterogeneous and analysis was not adjusted by potential confounders. Most studies did not define accurate outcomes and may have detected small effects as being statistically significant.
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Objetivo: La aparición de nueva información sobre las terapias biológicas en la espondiloartritis axial (EspAax) ha impulsado una nueva revisión de las recomendaciones de la Sociedad Española de Reumatología (SER) basadas en la mejor evidencia posible. Estas nuevas recomendaciones pueden servir de referencia para reumatólogos implicados en el tratamiento de estos pacientes. Métodos: Se creó un panel formado por nueve reumatólogos expertos en EspAax, previamente seleccionados por la SER mediante una convocatoria abierta. Las fases del trabajo fueron: identificación de las áreas clave para la actualización del consenso anterior, análisis y síntesis de la evidencia científica (sistema modificado de Oxford, CEBM, 2009) y formulación de recomendaciones a partir de esta evidencia y de técnicas de consenso. Resultados: Esta revisión de las recomendaciones comporta una actualización en la evaluación de actividad de la enfermedad y objetivos de tratamiento. Incorpora también los nuevos fármacos disponibles, así como sus nuevas indicaciones, y una revisión de los factores predictivos de respuesta terapéutica y progresión del daño radiográfico. Finalmente, estas recomendaciones abordan también las situaciones de fracaso a un primer anti-TNF, así como la posible optimización de la terapia biológica. El documento incluye una tabla de recomendaciones y un algoritmo de tratamiento. Conclusiones: Se presenta la actualización de las recomendaciones SER para el uso de terapias biológicas en pacientes con EspAax
Objective: Recent data published on biological therapy in axial spondyloarthritis (axSpA) since the last publication of the recommendations of the Spanish Society of Rheumatology (SER) has led to the generation of a review of these recommendations based on the best possible evidence. These recommendations should be a reference for rheumatologists and those involved in the treatment of patients with axSpA. Methods: Recommendations were drawn up following a nominal group methodology and based on systematic reviews. The level of evidence and grade of recommendation were classified according to the model proposed by the Centre for Evidence Based Medicine at Oxford. The level of agreement was established through the Delphi technique. Results: In this review, we did an update of the evaluation of disease activity and treatment objectives. We included the new drugs with approved therapeutic indication for axSpA. We reviewed both the predictive factors of the therapeutic response and progression of radiographic damage. Finally, we drafted some recommendations for the treatment of patients refractory to anti-tumor necrosis factor, as well as for the possible optimization of biological therapy. The document also includes a table of recommendations and a treatment algorithm. Conclusions: We present an update of the SER recommendations for the use of biological therapy in patients with axSpA
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Humanos , Espondiloartritis/tratamiento farmacológico , Terapia Biológica/métodos , Anticuerpos Monoclonales Humanizados/administración & dosificación , Pautas de la Práctica en Medicina/tendencias , Práctica Clínica Basada en la Evidencia/métodos , Progresión de la Enfermedad , Resultado del Tratamiento , Factor de Necrosis Tumoral alfa/antagonistas & inhibidores , Certolizumab Pegol/administración & dosificación , Interleucina-17/antagonistas & inhibidoresRESUMEN
OBJECTIVE: Recent data published on biological therapy in axial spondyloarthritis (axSpA) since the last publication of the recommendations of the Spanish Society of Rheumatology (SER) has led to the generation of a review of these recommendations based on the best possible evidence. These recommendations should be a reference for rheumatologists and those involved in the treatment of patients with axSpA. METHODS: Recommendations were drawn up following a nominal group methodology and based on systematic reviews. The level of evidence and grade of recommendation were classified according to the model proposed by the Centre for Evidence Based Medicine at Oxford. The level of agreement was established through the Delphi technique. RESULTS: In this review, we did an update of the evaluation of disease activity and treatment objectives. We included the new drugs with approved therapeutic indication for axSpA. We reviewed both the predictive factors of the therapeutic response and progression of radiographic damage. Finally, we drafted some recommendations for the treatment of patients refractory to anti-tumor necrosis factor, as well as for the possible optimization of biological therapy. The document also includes a table of recommendations and a treatment algorithm. CONCLUSIONS: We present an update of the SER recommendations for the use of biological therapy in patients with axSpA.
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Anticuerpos Monoclonales/uso terapéutico , Terapia Biológica/normas , Espondiloartritis/tratamiento farmacológico , Antirreumáticos/uso terapéutico , Terapia Biológica/métodos , Técnica Delphi , Humanos , España , Espondiloartritis/diagnóstico , Resultado del TratamientoRESUMEN
Objetivo: Establecer la validez de composición, contenido y criterios de un cuestionario de recursos para la provisión de servicios en Cuidados Paliativos (CP) a través de una metodología cualitativa, mediante grupos focales con profesionales de CP; en el marco de un proyecto de validación y evaluación de los resultados de un cuestionario de recursos para la provisión de servicios en (CP) en la Comunidad de Madrid (CM). Método: Se lleva a cabo un abordaje cualitativo para la validación del cuestionario de recursos. Se selecciona el grupo de discusión como técnica de elección para obtener un discurso en base a la experiencia personal de los profesionales implicados en el ámbito de los CP. Los grupos se componen de médicos, enfermeras, psicólogos, trabajadores sociales y agente de pastoral. Resultado: Los temas de discusión en los grupos fueron: dispersión geográfica de los recursos humanos, motivación laboral y personal, "ayuda psico-emocional" para profesionales, valoración integral y holística del paciente, equidad de los equipos, presupuesto social, apoyo al cuidador, ayuda entre equipos, sobrecarga laboral y humana, relación con la gerencia, futuro de los equipos: "estar quemados", trabajo en equipo, formación en CP, labor de enfermería en CP, protocolo de acogida en CP y aclaraciones terminológicas o conceptuales. Conclusiones: Este trabajo pretende ser el punto de partida para la elaboración y validación de un cuestionario en la provisión de servicios en CP, y así evaluar los recursos humanosy técnicos de nuestra red asistencial sanitaria paliativa
Objective: To establish the composition, content and criteria validity of a questionnaire of resources for services provision in Palliative Care (PC) through a qualitative methodology using focus groups with PC professionals. This is a part of a validation and evaluation research project for the provision of services (CP) in the Community of Madrid (CM). Methods: We performed a qualitative approach to the resource questionnaire validation. It was selected the focus group technique based on the personal experience of the professionals involved in PC. The groups were made up of physicians, nurses, psychologists, social workers and pastoral agent. Results: Discussion items in the groups were: human resources, geographical dispersion, work and personal motivation, "psycho-emotional" help for professionals, comprehensive and holistic patient approach, equipment equity, social budget, caregiver support , support between teams, overburden and human relationship with CEOs, future of teams: "be burned", team-working, teaching in PC, PC nursing work, PC welcome protocol and terminological and conceptual clarifications. Conclusions: This study tries to be the starting point for the development and validation of the PC provision of services questionnaire. It will be useful to assess the human and technical resources of our palliative health care network (AU)