Tailoring Rheumatoid Arthritis Treatment through a Sex and Gender Lens.

Rheumatoid arthritis (RA) occurs more frequently in women than in men, and the studies that have addressed clinical and prognostic differences between the sexes are scarce and have contradictory results and methodological problems. The present work aims to evaluate sex- and gender-related differences in the clinical expression and prognosis of RA as well as on the impact on psychosocial variables, coping behavior, and healthcare use and access. By identifying between sex differences and gender-related outcomes in RA, it may be possible to design tailored therapeutic strategies that consider the differences and unmet needs. Being that sex, together with age, is the most relevant biomarker and health determinant, a so-called personalized medicine approach to RA must include clear guidance on what to do in case of differences.

Openreuma consensus on the role of nursing in the care of patients with rheumatoid arthritis and diffuse interstitial lung disease / Consenso de Openreuma sobre el papel de la enfermería en el cuidado de pacientes con artritis reumatoide y enfermedad pulmonar intersticial difusa / Consenso Openreuma sobre o papel da enfermagem no cuidado de pacientes com artrite reumatoide e doença pulmonar intersticial difusa

Objective.To develop practical recommendations, based on the best available evidence and experience, on the nursing management of patients with rheumatoid arthritis (RA) and interstitial lung disease (ILD). Methods. The usual consensus methodology was used, with a nominal group, systematic reviews (SRs), and Delphi survey. The expert panel, consisting of rheumatology nurses, rheumatologists, a psychologist, a physiotherapist, and a patient, defined the scope, the users, the topics on which to explore the evidence and on which to issue recommendations. Results.Three PICO questions evaluated the efficacy and safety of pulmonary rehabilitation and non-pharmacological measures for the treatment of chronic cough and gastroesophageal reflux by means of SR of the literature. With the results of the reviews, 15 recommendations were established for which the degree of agreement was obtained with a Delphi survey. Three recommendations were rejected in the second round. The 12 recommendations were in patient assessment (n=4); patient education (n=4); and risk management (n=4). Only one recommendation was based on available evidence, while the remaining were based on expert opinion. The degree of agreement ranged from 77% to 100%. Conclusion.This document presents a series of recommendations with the aim of improving the prognosis and quality of life of patients with RA-ILD. Nursing knowledge and implementation of these recommendations can improve the follow-up and prognosis of patients with RA who present with ILD.

Objetivo.Desarrollar recomendaciones prácticas, basadas en la mejor evidencia y experiencia disponible, sobre el manejo de enfermería de los pacientes con artritis reumatoide (AR) y enfermedad pulmonar intersticial (EPI). Métodos. Se utilizó la metodología de consenso en la que un panel de expertos (formado por enfermeras de reumatología, reumatólogos, una psicóloga, una fisioterapeuta y una paciente) definió el ámbito, los usuarios, los temas sobre los que explorar la evidencia y sobre los que emitir recomendaciones. Tres preguntas PICO evaluaron la eficacia y seguridad de la rehabilitación pulmonar y las medidas no farmacológicas para el tratamiento de la tos crónica y el reflujo gastroesofágico mediante la búsqueda de revisiones sistemáticas, excluyendo aquellas cuya calidad era baja, muy baja o críticamente baja, según la herramienta AMSTAR-2. Posteriormente, se hizo una reunión para la formulación de recomendaciones que se presentaron con un resumen de la evidencia a la encuesta Delphi. Resultados.Con los resultados de las revisiones se establecieron 15 recomendaciones cuyo grado de acuerdo osciló entre el 77% y el 100% en la una encuesta Delphi. Tres recomendaciones fueron rechazadas en la segunda ronda: una por la evidencia disponible y los dos restantes se basaron en la opinión de expertos. Las 12 recomendaciones restantes aprobadas se referían a la evaluación del paciente (n=4), a la educación del paciente (n=4) y a la gestión del riesgo (n=4). Conclusión. El conocimiento del consenso Openreumapor parte de enfermería y la aplicación sus 12 recomendaciones basadas en la mejor evidencia y experiencia puede mejorar el seguimiento y el pronóstico de los pacientes con AR que presentan EPI.

Objetivo.Desenvolver recomendações práticas, baseadas na melhor evidência e experiência disponíveis, sobre o manejo de enfermagem de pacientes com artrite reumatoide (AR) e doença pulmonar intersticial (DPI). Métodos.Foi utilizada a metodologia de consenso, com grupo nominal, revisões sistemáticas e levantamento Delphi. O painel de especialistas, formado por enfermeiros reumatologistas, reumatologistas, psicólogo, fisioterapeuta e paciente, definiu o escopo, os usuários, os tópicos sobre os quais explorar as evidências e sobre os quais emitir recomendações. Três questões do PICO avaliaram a eficácia e segurança da reabilitação pulmonar e medidas não farmacológicas para o tratamento da tosse crônica e refluxo gastroesofágico por meio de RS. Aqueles cuja qualidade era baixa, muito baixa ou criticamente baixa, de acordo com a ferramenta AMSTAR-2, foram excluídos. Posteriormente, realizou-se uma reunião para formular recomendações que foram apresentadas com um resumo das evidências ao inquérito Delphi. Resultados. Com os resultados das revisões, foram estabelecidas 15 recomendações cujo grau de concordância entre 77% e 100% foi obtido com uma pesquisa Delphi. Três recomendações foram rejeitadas na segunda rodada. As 12 recomendações referiam-se à avaliação do paciente (n=4); à educação do paciente (n=4); e ao gerenciamento de risco (n=4). Apenas uma recomendação foi baseada nas evidências disponíveis, enquanto as demais foram baseadas na opinião de especialistas. Conclusão. Este documento apresenta uma série de recomendações com o objetivo de melhorar o prognóstico e a qualidade de vida dos pacientes com AR-ILD. O conhecimento da enfermagem e a aplicação dessas recomendações podem melhorar o acompanhamento e o prognóstico de pacientes com AR com DPI.

Safety and efficacy in the nursing care of people with rheumatic diseases on janus kinase inhibitor therapy.

Nurses's support of patients needs an evidence base as much as that of specialists management. However, some more practical aspects need specific questions that are not addressed in medical societies' recommendations. Our objective was to investigate the effect of Janus kinase inhibitors (jakinibs) on efficacy, safety, infections, cardiovascular risk, vaccination, pregnancy and lactation, interactions, surgery, and switch in adult patients with rheumatic diseases. We used the methodology for rapid reviews. Medline was searched for systematic reviews of randomised clinical trials and longitudinal observational studies reporting on the target aspects, without limits, yielding 540 titles, of which 70 articles were selected for detailed reading after the screening of title and abstract. In the case of no systematic review being published on a specific question, we resorted to the information provided by primary studies. The efficacy and safety profiles are similar to that of TNF-inhibitors to which they are compared in most studies; however, there is an increased risk of herpes zoster infections with jakinibs. The evidence on pregnancy, surgery and switches between jakinibs is very limited, although, so far, there are no major issues to inform patients about or to implement specific measures. In general, evidence to support nursing management in patients being treated with jakinibs is of moderate quality and scarce, ought to the recent incursion of jakinibs as a treatment.

Openreuma Consensus on the role of nursing in the care of patients with rheumatoid arthritis and diffuse interstitial lung disease.

OBJECTIVES: To develop practical recommendations, based on the best available evidence and experience, on the nursing management of patients with rheumatoid arthritis (RA) and interstitial lung disease (ILD). METHODS: The usual consensus methodology was used, with a nominal group, systematic reviews (SRs), and Delphi survey. The expert panel, consisting of rheumatology nurses, rheumatologists, a psychologist, a physiotherapist, and a patient, defined the scope, the users, the topics on which to explore the evidence and on which to issue recommendations. RESULTS: Three PICO questions evaluated the efficacy and safety of pulmonary rehabilitation and non-pharmacological measures for the treatment of chronic cough and gastroesophageal reflux by means of SR of the literature. With the results of the reviews, 15 recommendations were established for which the degree of agreement was obtained with a Delphi survey. Three recommendations were rejected in the second round. The 12 recommendations were in patient assessment (n=4); patient education (n=4); and risk management (n=4). Only one recommendation was based on available evidence, while the remaining were based on expert opinion. The degree of agreement ranged from 77% to 100%. CONCLUSIONS: This document presents a series of recommendations with the aim of improving the prognosis and quality of life of patients with RA-ILD. Nursing knowledge and implementation of these recommendations can improve the follow-up and prognosis of patients with RA who present with ILD.

Multilevel factors predict medication adherence in rheumatoid arthritis: a 6-month cohort study.

Non-adherence challenges efficacy and costs of healthcare. Knowledge of the underlying factors is essential to design effective intervention strategies. OBJECTIVES: To estimate the prevalence of treatment adherence in rheumatoid arthritis (RA) and to evaluate its predictors. METHODS: A 6-month prospective cohort study of patients with RA selected by systematic stratified sampling (33% on first disease-modifying rheumatic drug (DMARD), 33% on second-line DMARD and 33% on biologics). The outcome measure was treatment adherence, defined by a score greater than 80% both in the Compliance Questionnaire in Rheumatology and the Reported Adherence to Medication scale, and was estimated with 95% CIs. Predictive factors included sociodemographic, psychological, clinical, drug-related, patient-doctor relationship related and logistic. Their effect on 6-month adherence was examined by multilevel logistic models adjusted for baseline covariates. RESULTS: 180 patients were recruited (77% women, mean age 60.8). The prevalence of adherence was 59.1% (95% CI 48.1% to 71.8%). Patients on biologics showed higher adherence and perceived a higher medication need than the others; patients on second-line DMARDs had experienced more adverse events than the others. The variables explaining adherence in the final multivariate model were the type of treatment prescribed (second-line DMARDs OR=5.22, and biologics OR=3.76), agreement on treatment (OR=4.57), having received information on treatment adaptation (OR=1.42) and the physician perception of patient trust (OR=1.58). These effects were independent of disease activity. CONCLUSION: Treatment adherence in RA is far from complete. Psychological, communicational and logistic factors influence treatment adherence in RA to a greater extent than sociodemographic or clinical factors.

Clinical Characteristics of Juvenile Idiopathic Inflammatory Myopathy and Comparison With Adult Patients: Analysis From a Multicentric Cohort in Spain.

METHODS: This study reviewed the medical records of patients from the REMICAM cohort, a multicentric longitudinal study carried out in patients with IIM, followed up between 1980 and 2014 in 12 hospitals in Madrid, Spain. Patients with definite or probable JPM, JDM, adult DM, and adult PM according to the modified Bohan and Peter criteria were selected. We compared the characteristics between JDM and JPM, and between JIIM and adult IIM. RESULTS: Eighty-six juvenile patients (75 JDMs and 11 JPMs) and 283 adult patients (133 DMs and 150 PMs) were included. Compared with patients with JDM, patients with JPM were older at diagnosis, had more fever and arthritis, and were less frequently treated with disease-modifying antirheumatic drugs (these differences were not statistically significant). Compared with patients with adult DM, those with JDM presented more frequently with calcinosis (33.8% vs 6.9%, p < 0.0001) and had less severe infections (4.3% vs 23.4%, p < 0.0001), malignancies (1.3% vs 25.6%, p < 0.0001), and mortality (3.5% vs 33%, p < 0.0001). Patients with JDM were treated less frequently with azathioprine (10.8% vs 44.7%, p < 0.0001). CONCLUSIONS: Our findings confirm that JIIMs are a heterogeneous group of diseases with relevant differences compared with adult IIMs.

Development of a Tool to Measure the Clinical Response to Biologic Therapy in Uncontrolled Severe Asthma: The FEV1, Exacerbations, Oral Corticosteroids, Symptoms Score.

BACKGROUND: There is a lack of tools to quantify the response to monoclonal antibodies (mAbs) holistically in severe uncontrolled asthma patients. OBJECTIVE: To develop a valid score to assist specialists in this clinical context. METHODS: The score was developed in four subsequent phases: (1) elaboration of the theoretical model of the construct intended to be measured (response to mAbs); (2) definition and selection of items and measurement instruments by Delphi survey; (3) weight assignment of the selected items by multicriteria decision analysis using the Potentially All Pairwise RanKings of All Possible Alternatives methodology using the 1000minds software; and (4) face validity assessment of the obtained score. RESULTS: Four core items, with different levels of response for each, were selected: severe exacerbations, oral corticosteroid use, symptoms (evaluated by Asthma Control Test), and bronchial obstruction (assessed by FEV1 percent predicted). Severe exacerbations and oral corticosteroid maintenance dose were weighted most heavily (38% each), followed by symptoms (13%) and FEV1 (11%). Higher scores in the weighted system indicate a better response and the range of responses runs from 0 (worsening) to 100 (best possible response). Face validity was high (intraclass correlation coefficient of 0.86). CONCLUSIONS: The FEV1, exacerbations, oral corticosteroids, symptoms score allows clinicians to quantify response in severe uncontrolled asthma patients who are being treated with mAbs.

Experience and satisfaction with a multidisciplinary care unit for patients with psoriasis an psoriatic arthritis / Experiencia y satisfacción en una unidad de atención multidisciplinaria para pacientes con psoriasis y artritis psoriásica

Objective: To describe patient's characteristics, the activity and patient's satisfaction with a multidisciplinary care unit in patients with psoriasis and psoriatic arthritis (PsA). Methods: A retrospective medical records review of patients with psoriasis or PsA attended in a multidisciplinary care unit was performed. Included patients were contacted to fulfill a satisfaction questionnaire. A specific electronic database was set up. Data regarding to patients and their baseline characteristics and the activity of the unit were collected. Descriptive analysis were performed. Results: A total of 112 patients with 154 visits were included in almost 3 years, 54% women, with a mean age of 51 years, 43.7% presented hyperlipidemia and 30.4% arterial hypertension. Half of patients were referred due to diagnostic doubts and the other half for therapeutic problems. After the evaluation of the patients, 66 patients (58.9%) met diagnostic criteria for PsA, and 13 (11.6%) of an inflammatory disease other than PsA, and 95% came back to their usual physician. The most ordered test were laboratory tests (75.6% of patients), followed by X-rays in 57 patients (51.3%). In general the number of patients with different treatments increased, and 55.4% and 42% of patients changed their topic and systemic treatments respectively. The level of satisfaction was very high and all of patients considered that their disease was better controlled in this multidisciplinary care unit. Conclusions: This multidisciplinary care unit has improved the care and satisfaction of patients with psoriasis or PsA, and increased collaboration between rheumatology and dermatology departments

Objetivo: Describir las características de los pacientes, la actividad registrada, así como la satisfacción percibida, de una consulta de atención multidisciplinar para pacientes con psoriasis o artritis psoriásica (APs). Métodos: Estudio observacional retrospectivo con revisión de historias clínicas de todos los pacientes atendidos en la consulta de atención multidisciplinar. Se contactó con todos ellos para que contestasen una encuesta de satisfacción. Varios investigadores recogieron datos sociodemográficos y clínicos, así como administrativos incluyendo el número de visitas en una base de datos especialmente generada para este proyecto. Se realizó un análisis descriptivo. Resultados: Se incluyó a 112 pacientes con 154 visitas en casi 3 años, 54% mujeres, y una edad media de 51 años; el 43,7% presentó hiperlipidemia y el 30,4% hipertensión arterial. La mitad fueron referidos por dudas diagnósticas y la otra por problemas terapéuticos. Tras su evaluación, 66 pacientes (58,9%) cumplieron los criterios diagnósticos de APs y 13 (11,6%) de una enfermedad inflamatoria distinta. El 95% regresó a su médico habitual. La pruebas complementarias más solicitadas fueron analíticas (75,6%) y radiografías simples (51,3%). En general, el número de pacientes con nuevos tratamientos aumentó y el 55,4 y el 42% de los pacientes cambiaron sus tratamientos tópico y sistémico, respectivamente. El nivel de satisfacción fue muy alto y todos los pacientes consideraron que su enfermedad estaba mejor controlada en esta unidad. Conclusiones: Esta consulta de atención multidisciplinar ha mejorado el manejo y satisfacción de pacientes con psoriasis o APs y ha incrementado la colaboración entre los servicios de Reumatología y Dermatología

Overlap myositis, a distinct entity beyond primary inflammatory myositis: A retrospective analysis of a large cohort from the REMICAM registry.

BACKGROUND: Inflammatory idiopathic myositis (IIM) comprises a heterogeneous group of systemic muscular diseases that can occur together with other connective tissue diseases (CTD), named overlap myositis (OM). The question of whether OM is a distinct entity still remains controversial. AIM: The present study was conducted to assess the clinical and prognostic differences between patients diagnosed with OM, primary polymyositis (PM) and primary dermatomyositis (DM). METHOD: The study consists of a retrospective longitudinal and multicenter series of IIM patients. Patients were classified as OM, PM and DM. Overlap myositis was defined as patients fulfilling criteria for IIM plus criteria for other CTD (namely systemic sclerosis, systemic lupus erythematosus, mixed connective tissue disease, rheumatoid arthritis and primary Sjögren's syndrome). RESULT: A total of 342 patients were included (98 OM, 137 PM and 107 DM). Overlap myositis patients, in comparison with PM and DM, showed significant differences, with more extramuscular involvement, particularly more arthritis (66%, 34.6% and 48.1%, respectively), puffy fingers (49.5%, 11.1% and 24.3%), sclerodactyly (45.4%, 2.2% and 2%), dysphagia (41.8%, 18.2% and 26.4%), Raynaud phenomenon (65.3%, 16.9% and 19.8%), leucopenia (28.9%, 2.2% and 8.4%), thrombocytopenia (8.2%, 2.2% and 1.9%), interstitial lung disease (ILD) (48%, 35% and 30.8%), renal manifestations (13.4%, 3.7% and 1.9%), and more severe infections (41.3%, 26.7% and 21%). No significant differences were found in survival between groups in log rank test (P = 0.106). Multivariate adjusted survival analyses revealed a worse prognosis for severe infections, ILD and baseline elevation of acute phase reactants. CONCLUSION: Overlap myositis stands out as a distinct entity as compared to PM and DM, featuring more extramuscular involvement and more severe infections. Close monitoring is recommended in this subset for early detection and treatment of possible complications.

Launch and preliminary analysis of Hospital de La Princesa's inter-specialists biological therapies unit / Lanzamiento y análisis preliminar de la Unidad de Terapias Biológicas interespecialistas del Hospital de La Princesa

We herein describe an inter-specialists unit for the monitoring and management of biological therapies and analyze the utilization of biological agents across specialties and diseases. Protocols and therapeutic objectives, as well as outcomes and protocol deviations, are shared and discussed periodically between specialists. All patients treated at one centre with any biological treatment from January 2000 by rheumatology, gastroenterology, dermatology, or neurology, regardless diagnosis, are identified by Clinical Pharmacy and included in an ongoing database that detects use and outcome. The drugs, survival, and reasons for discontinuation differ significantly across specialties. This approach has helped us recognizing the challenges and size of the problem of sharing expensive medications across specialties, and has served as a starting point to contribute to the better use of these compounds

A continuación describimos una unidad interservicios para el seguimiento y la gestión de las terapias biológicas, y analizamos la utilización de los agentes biológicos en las distintas especialidades y enfermedades. Los protocolos y los objetivos terapéuticos, así como los resultados y las desviaciones de los protocolos, se comparten y debaten periódicamente entre los especialistas. Todos los pacientes tratados en el centro con cualquier terapia biológica desde enero de 2000 por reumatología, gastroenterología, dermatología o neurología, independientemente del diagnóstico, son identificados por Farmacia Clínica e incluidos en una base de datos continua, que detecta el uso y los resultados. Los medicamentos, la supervivencia y las razones de interrupción del tratamiento difieren significativamente entre especialidades. Este enfoque nos ha ayudado a reconocer los retos y la magnitud del problema de compartir medicamentos costosos entre especialidades, y ha servido como punto de partida para contribuir a un mejor uso de los mismos

Launch and preliminary analysis of Hospital de La Princesa's inter-specialists biological therapies unit.

We herein describe an inter-specialists unit for the monitoring and management of biological therapies and analyze the utilization of biological agents across specialties and diseases. Protocols and therapeutic objectives, as well as outcomes and protocol deviations, are shared and discussed periodically between specialists. All patients treated at one centre with any biological treatment from January 2000 by rheumatology, gastroenterology, dermatology, or neurology, regardless diagnosis, are identified by Clinical Pharmacy and included in an ongoing database that detects use and outcome. The drugs, survival, and reasons for discontinuation differ significantly across specialties. This approach has helped us recognizing the challenges and size of the problem of sharing expensive medications across specialties, and has served as a starting point to contribute to the better use of these compounds.

Long-term pulmonary outcomes and mortality in idiopathic inflammatory myopathies associated with interstitial lung disease.

OBJECTIVE: To study prognostic factors in different types of idiopathic inflammatory myopathies (IIM) associated with interstitial lung disease (ILD). PATIENTS AND METHODS: Multicenter retrospective study of a Spanish cohort of patients diagnosed with IIM. Patients were classified into four categories: polymyositis (PM), dermatomyositis (DM), antisynthetase syndrome (ASS), and overlap myositis (OM). Sociodemographic data, clinical characteristics, antibodies, and treatments were collected. Cox regression models were calculated to identify factors associated with mortality, the necessity for long-term oxygen therapy (LTOT), and deterioration in respiratory function tests (RFT). RESULTS: The number of patients included was 478, of whom 112 (23.4%) suffered from ILD: 17% PM, 16% DM, 45% ASS, and 22% OM. Factors associated with mortality in the multivariate analysis were clinically meaningful progression of ILD after 3 months (CMP 3m) (hazard ratio (HR) 9.48, p = 0.005), severe infections (HR 6.41, p = 0.016), heliotrope erythema (HR 31.1, p = 0.002), delay in diagnosis (HR 1.29; p = 0.011), and Raynaud's phenomenon (HR 11.9, p = 0.007). However, being female (HR 0.19, p = 0.044) and positivity solely for ANAs (HR 0.08, p = 0.008) presented a protective effect. CMP 3m (HR 22.7, p = 0.027) was associated with the need for LTOT, while basal aldolase (HR 0.90; p = 0.049) had a protective effect. Likewise, joint manifestations (HR 0.04, p = 0.034) were shown to reduce risk of deterioration in RFT. CONCLUSIONS: CMP 3m, severe infections, delay in diagnosis, heliotrope erythema, and Raynaud's phenomenon were identified as factors of poor prognosis in different IIM associated with ILD.

Experience and satisfaction with a multidisciplinary care unit for patients with psoriasis an psoriatic arthritis.

OBJECTIVE: To describe patient's characteristics, the activity and patient's satisfaction with a multidisciplinary care unit in patients with psoriasis and psoriatic arthritis (PsA). METHODS: A retrospective medical records review of patients with psoriasis or PsA attended in a multidisciplinary care unit was performed. Included patients were contacted to fulfill a satisfaction questionnaire. A specific electronic database was set up. Data regarding to patients and their baseline characteristics and the activity of the unit were collected. Descriptive analysis were performed. RESULTS: A total of 112 patients with 154 visits were included in almost 3 years, 54% women, with a mean age of 51 years, 43.7% presented hyperlipidemia and 30.4% arterial hypertension. Half of patients were referred due to diagnostic doubts and the other half for therapeutic problems. After the evaluation of the patients, 66 patients (58.9%) met diagnostic criteria for PsA, and 13 (11.6%) of an inflammatory disease other than PsA, and 95% came back to their usual physician. The most ordered test were laboratory tests (75.6% of patients), followed by X-rays in 57 patients (51.3%). In general the number of patients with different treatments increased, and 55.4% and 42% of patients changed their topic and systemic treatments respectively. The level of satisfaction was very high and all of patients considered that their disease was better controlled in this multidisciplinary care unit. CONCLUSIONS: This multidisciplinary care unit has improved the care and satisfaction of patients with psoriasis or PsA, and increased collaboration between rheumatology and dermatology departments.

Artritis reumatoide: epidemiología e impacto sociosanitario / Rheumatoid arthritis: Epidemiology and societal and healthcare costs

La artritis reumatoide es una enfermedad crónica, de distribución universal y con un impacto muy importante sobre la vida del paciente y la sociedad en su conjunto. En España se ha estimado una prevalencia del 0,5%, que es mayor en mujeres y en áreas urbanas, y una incidencia anual de 8,3 casos por cada 100.000 adultos mayores de 16 años. Tanto la prevalencia como la incidencia varían dependiendo del área geográfica y de otros factores. Su etiología es desconocida, aunque existen datos que sugieren la implicación de genes y de factores ambientales en su desarrollo, como el hábito tabáquico. La artritis reumatoide disminuye enormemente la calidad de vida de los pacientes, tanto en su área física como en la psicológica, lo que a su vez repercute en el plano familiar, social y laboral. Todo ello, además, genera un importante coste sociosanitario

Rheumatoid arthritis (RA) is a worldwide chronic illness with a significant impact on patients' lives and society as a whole. In Spain, its prevalence has been estimated at 0.5%, with a higher prevalence among women and in urban areas. It has an annual incidence of 8.3 cases per 100,000 adults aged 16 and older. Both the prevalence and the incidence vary depending on geographic area and other factors. Although the aetiology of the disease is unknown, data show a relationship between the involvement of genes and environmental factors, such as smoking, in the development of this pathology. RA dramatically impairs patients' quality of life, both physically and psychologically, with family, social, and professional repercussions. All this also leads to significant societal and healthcare costs

Registro de pacientes con miopatía inflamatoria de la Sociedad Madrileña de Reumatología: análisis descriptivo / Multicenter registry on inflammatory myositis from the Rheumatology Society in Madrid, Spain: descriptive analysis

Objetivos. Describir las características clínicas, mortalidad y causas de muerte de una serie de pacientes diagnosticados de miositis inflamatoria idiopática del registro REMICAM de la Sociedad de Reumatología de la Comunidad de Madrid (SORCOM). Métodos. Estudio descriptivo retrospectivo multicéntrico de una cohorte de pacientes con diagnóstico de miositis inflamatoria idiopática en seguimiento en servicios de reumatología de hospitales de la Comunidad de Madrid entre enero de 1980 y diciembre de 2014. Se han recogido hasta un total de 313 variables acerca de aspectos demográficos, clínicos y de morbimortalidad, y se ha realizado una comparación entre subgrupos clínicos. Resultados. Se han reclutado 479 pacientes procedentes de 12 centros, con un 14% de pérdidas durante el periodo de seguimiento. El 74% de los casos eran mujeres, una edad al diagnóstico de 44±23 años, y una media de seguimiento de 10±8 años. Los subgrupos clínicos más frecuentes fueron las formas primarias (PM 29%, DM 22%), seguidas de síndrome de solapamiento (20,5%), miopatías juveniles (18%), miopatías asociadas a cáncer (8%), miopatías necrosantes inmunomediadas (1%) y miositis por cuerpos de inclusión (1%). Durante el periodo de seguimiento se produjeron un total de 114 fallecimientos (28%), siendo las principales causas el cáncer (24%), las infecciones (23%) y los eventos cardiovasculares (21%). Conclusiones. En el registro REMICAM de miopatías inflamatorias de la Comunidad de Madrid se han reclutado 479 casos de miositis inflamatoria idiopática con datos sociodemográficos, clínicos y pronósticos, suponiendo el mayor registro multicéntrico español en el ámbito de la Reumatología hasta la fecha, y constituyendo una fuente importante para la realización de posteriores subestudios (AU)

Objective. To analyze clinical characteristics, survival and causes of death of patients diagnosed with autoimmune inflammatory myositis in the REMICAM registry from the Society of Rheumatology in the Community of Madrid (SORCOM). Methods. Multicenter cohort of patients diagnosed with autoimmune inflammatory myopathy with follow-up between January 1980 and December 2014. A total of 313 variables concerning demographic, clinical and morbidity data were collected, and a comparison was performed between clinical subgroups. Results. A total of 479 patients were recruited from 12 centers, with 14% of patients lost to follow-up. Seventy-four percent of cases were women, age at diagnosis of 44±23 years and a mean follow-up period of 10±8 years. The most frequent clinical subgroups were primary myositis (PM 29%, DM 22%), followed by overlap myositis (20.5%), juvenile myositis (18%), myositis associated with cancer (8%), immune-mediated necrotizing myositis (1%) and inclusion body myositis (1%). During the follow-up period, a total of 114 deaths (28%) were registered, the main causes being cancer (24%), infections (23%) and cardiovascular events (21%). Conclusions. A total of 479 patients were recruited in the REMICAM registry of inflammatory myopathies. Including sociodemographic, clinical and prognostic information, it represents the largest Spanish multicenter registry to date in rheumatology, and constitutes an important source for conducting further substudies (AU)

Mortality and prognostic factors in idiopathic inflammatory myositis: a retrospective analysis of a large multicenter cohort of Spain.

The present study was undertaken to assess mortality, causes of death, and associated prognostic factors in a large cohort of patients diagnosed with idiopathic inflammatory myositis (IIM) from Spain. A retrospective longitudinal study was carried out in 467 consecutive patients with IIM, identified from 12 medical centers. Patients were classified as primary polymyositis, primary dermatomyositis (DM), overlap myositis, cancer-associated myositis (CAM), and juvenile idiopathic inflammatory myopathies. A total of 113 deaths occurred (24%) after a median follow-up time of 9.7 years. In the overall cohort, the 2-, 5-, and 10-year survival probabilities were 91.9, 86.7, and 77%, respectively. Main causes of death were infections and cancer (24% each). Multivariate model revealed that CAM (HR = 24.06), OM (HR = 12.00), DM (HR = 7.26), higher age at diagnosis (HR = 1.02), severe infections (HR = 3.66), interstitial lung disease (HR = 1.61), and baseline elevation of acute phase reactants (HR = 3.03) were associated with a worse prognosis, while edema of the hands (HR = 0.39), female gender (HR = 0.39), and longer disease duration (HR = 0.73) were associated with a better prognosis. The standardized mortality ratio was 1.56 (95% CI 1.28-1.87) compared to the Spanish general population. Our findings indicate that IIM has a high long-term mortality, with an excess of mortality compared to the Spanish population. A more aggressive therapy may be required in IIM patients presenting with poor predictive factors.

Multicenter registry on inflammatory myositis from the Rheumatology Society in Madrid, Spain: Descriptive Analysis. / Registro de pacientes con miopatía inflamatoria de la Sociedad Madrileña de Reumatología: análisis descriptivo.

OBJECTIVE: To analyze clinical characteristics, survival and causes of death of patients diagnosed with autoimmune inflammatory myositis in the REMICAM registry from the Society of Rheumatology in the Community of Madrid (SORCOM). METHODS: Multicenter cohort of patients diagnosed with autoimmune inflammatory myopathy with follow-up between January 1980 and December 2014. A total of 313 variables concerning demographic, clinical and morbidity data were collected, and a comparison was performed between clinical subgroups. RESULTS: A total of 479 patients were recruited from 12 centers, with 14% of patients lost to follow-up. Seventy-four percent of cases were women, age at diagnosis of 44±23 years and a mean follow-up period of 10±8 years. The most frequent clinical subgroups were primary myositis (PM 29%, DM 22%), followed by overlap myositis (20.5%), juvenile myositis (18%), myositis associated with cancer (8%), immune-mediated necrotizing myositis (1%) and inclusion body myositis (1%). During the follow-up period, a total of 114 deaths (28%) were registered, the main causes being cancer (24%), infections (23%) and cardiovascular events (21%). CONCLUSIONS: A total of 479 patients were recruited in the REMICAM registry of inflammatory myopathies. Including sociodemographic, clinical and prognostic information, it represents the largest Spanish multicenter registry to date in rheumatology, and constitutes an important source for conducting further substudies.

A double-blind, randomized, cross-over, placebo-controlled, pilot trial with Sativex in Huntington's disease.

Huntington's disease (HD) is a neurodegenerative disease for which there is no curative treatment available. Given that the endocannabinoid system is involved in the pathogenesis of HD mouse models, stimulation of specific targets within this signaling system has been investigated as a promising therapeutic agent in HD. We conducted a double-blind, randomized, placebo-controlled, cross-over pilot clinical trial with Sativex(®), a botanical extract with an equimolecular combination of delta-9-tetrahydrocannabinol and cannabidiol. Both Sativex(®) and placebo were dispensed as an oral spray, to be administered up to 12 sprays/day for 12 weeks. The primary objective was safety, assessed by the absence of more severe adverse events (SAE) and no greater deterioration of motor, cognitive, behavioral and functional scales during the phase of active treatment. Secondary objectives were clinical improvement of Unified Huntington Disease Rating Scale scores. Twenty-six patients were randomized and 24 completed the trial. After ruling-out period and sequence effects, safety and tolerability were confirmed. No differences on motor (p = 0.286), cognitive (p = 0.824), behavioral (p = 1.0) and functional (p = 0.581) scores were detected during treatment with Sativex(®) as compared to placebo. No significant molecular effects were detected on the biomarker analysis. Sativex(®) is safe and well tolerated in patients with HD, with no SAE or clinical worsening. No significant symptomatic effects were detected at the prescribed dosage and for a 12-week period. Also, no significant molecular changes were observed on the biomarkers. Future study designs should consider higher doses, longer treatment periods and/or alternative cannabinoid combinations.Clincaltrals.gov identifier: NCT01502046.

Adherence to biologic therapies and associated factors in rheumatoid arthritis, spondyloarthritis and psoriatic arthritis: a systematic literature review.

OBJECTIVES: To analyse the evidence on adherence to biologic therapies in rheumatoid arthris (RA), spondyloarthritis (SpA), and psoriatic arthritis (PsA). METHODS: Systematic review of studies retrieved by a sensitive search strategy in MEDLINE database (1961 through March 2012). To be selected, studies had to include patients with RA, SpA, or PsA, treatment with intravenous or subcutaneous biologic therapies, and had to report on measures of adherence. By design, only randomised controlled trials (RCT) or high quality cohort studies with a control group were selected. RESULTS: A total of 24 studies were included, of which 12 reported results from national or local biologic registers, 9 were retrospective studies, 2 prospective studies, and only one was an RCT. Patients included were mostly women with diagnosis of RA or SpA and, less frequently, PsA. There was a great variability in the definition of adherence, measurement methods, and associated factors analysed. In general, adherence to etanercept was superior to that of other biologics, by the measures utilised. The main predictive factors - age, sex, comorbidity, baseline clinical condition, previous or concomitant use of DMARDs, anti-TNF in monotherapy or in combination with MTX - produced diverse, even divergent results across studies. CONCLUSIONS: There is a wide variability related to the adherence concept and its measurement, reflecting the complexity of the phenomenon. In order to draw more consistent conclusions about the relative value of predictive factors on adherence and persistence of biological therapy, larger controlled studies with better selection of variables and analysis of interactions are needed.