Cristina Ponte

ACR/EULAR-endorsed study to develop Diagnostic and Classification Criteria for Vasculitis (DCVAS).

The systemic vasculitides are a group of uncommon diseases characterized by blood vessel inflammation. There are currently no diagnostic criteria for the primary systemic vasculitides and physicians must rely on experience and disease definitions. The absence of validated criteria can result in delays in making the correct diagnosis and starting appropriate therapy. With the increased understanding of the pathophysiology of vasculitis and newer diagnostic tests in widespread clinical use, it is an appropriate time for classification criteria for primary vasculitis to be revised. The Diagnostic and Classification Criteria for Vasculitis (DCVAS) study is a multinational observational study designed to develop and validate diagnostic criteria and to improve and validate classification criteria for primary systemic vasculitis. The analytic approach will be based on the traditional approach of vessel size for classification of vasculitis but will also incorporate detailed clinical data, evaluation of anti-neutrophil cytoplasm antibody diagnostic testing, biopsy and imaging data. The study is following the guidelines for the development of classification criteria established by the American College of Rheumatology and the European League against Rheumatism. The study will incorporate the use of pre-defined cases of each condition to reduce the inherent circularity when developing new classification criteria and will explore alternative approaches to deriving reference standards by creating data-driven classification algorithms. We anticipate recruiting >2,000 patients with primary systemic vasculitis and 1,500 patients with autoimmune diseases and other conditions that mimic vasculitis. As of June 2013, >100 medical centers across 31 countries in Asia, Australasia, Europe, North America, and South America were contributing data to the study. The DCVAS study provides a unique opportunity to increase generalizability and collate a large dataset on the occurrence, presentation, and outcome of vasculitis in different populations.

In their own words: what bothers children online?

In an open-ended survey question to European 9- to 16-year-olds, some 10,000 children reported a range of risks that concern them on the internet. Pornography (named by 22% of children who mentioned risks), conduct risk such as cyber-bullying (19%) and violent content (18%) were at the top of children’s concerns. The priority given to violent content is noteworthy insofar as this receives less attention than sexual content or bullying in awareness-raising initiatives. Many children express shock and disgust on witnessing violent, aggressive or gory online content, especially that which graphically depicts realistic violence against vulnerable victims, including from the news. Video-sharing websites such as YouTube were primary sources of violent and pornographic content. The findings discussed in relation to children’s fear responses to screen media and the implications for the public policy agenda on internet safety are identified.

EULAR recommendations for the use of imaging in large vessel vasculitis in clinical practice

To develop evidence-based recommendations for the use of imaging modalities in primary large vessel vasculitis (LVV) including giant cell arteritis (GCA) and Takayasu arteritis (TAK). European League Against Rheumatism (EULAR) standardised operating procedures were followed. A systematic literature review was conducted to retrieve data on the role of imaging modalities including ultrasound, MRI, CT and [18F]-fluorodeoxyglucose positron emission tomography (PET) in LVV. Based on evidence and expert opinion, the task force consisting of 20 physicians, healthcare professionals and patients from 10 EULAR countries developed recommendations, with consensus obtained through voting. The final level of agreement was voted anonymously. A total of 12 recommendations have been formulated. The task force recommends an early imaging test in patients with suspected LVV, with ultrasound and MRI being the first choices in GCA and TAK, respectively. CT or PET may be used alternatively. In case the diagnosis is still in question after clinical examination and imaging, additional investigations including temporal artery biopsy and/or additional imaging are required. In patients with a suspected flare, imaging might help to better assess disease activity. The frequency and choice of imaging modalities for long-term monitoring of structural damage remains an individual decision; close monitoring for aortic aneurysms should be conducted in patients at risk for this complication. All imaging should be performed by a trained specialist using appropriate operational procedures and settings. These are the first EULAR recommendations providing up-to-date guidance for the role of imaging in the diagnosis and monitoring of patients with (suspected) LVV.

Exploring Types of Parent–Child Relationship and Internet use across Europe

This article explores internet-related parent–child relationships across twenty-five European countries. Parent–child dyads are analysed in terms of parental mediation, digital competence, and communicative proximity, in order to answer the following research questions: Which types of parent–child relationship with respect to internet use can be found? How do they coincide with developmental, social, and cultural patterns? And how are they distributed across European Union countries? Using data from the EU Kids Online survey, four types of parent–child relationship were identified. The types are shaped by several factors on the level of child, family, and country, with the childs age and internet use being the most important predictors. Based on the prevalence of these family types, six country clusters were identified, which represent technical, social, and cultural contexts shaping the type of internet-related parent–child relationship.

MAPPING NEWS ON CHILDREN IN THE MAINSTREAM PRESS

ABSTRACT Research on the ways children are presented in the mainstream news media has recently become a focus of attention in Media Studies, stressing news approaches that oscillate between demonizing children and picturing them as a powerful symbol of victimization. Furthermore, children themselves do not make any statements: they are simply not heard. Similarly, there is an emphasis on episodic events, imbued with emotional or moral components. There is also a focus on risk situations, delinquency or parental advice on how to deal with new generations. This contrasts with little attention being paid to economic and social policies based on the UN Convention on the Rights of the Child. Based on these ambivalences, a longitudinal analysis of Portuguese newspapers (1970–2000) and a comparative analysis of European newspapers during a week in 2000, have been carried out in order to determine what and how they report children and related issues, and what frames have been changed or maintained. Consequently, the article explores the many facets of reporting and the implications for our public life, particularly with regards to children.

Conectando generaciones: investigación y aprendizaje en educación en medios y estudios de audiencia

A partir de orientaciones teoricas y metodologicas previas sobre medios de comunicacion y generaciones, este articulo presenta un proceso de investigacion y aprendizaje a partir de la supervision del trabajo de campo desempenado por estudiantes licenciados en el Seminario del Master en Medios de Comunicacion en la Facultad de Humanidades y Ciencias Sociales de la Universidad Nueva de Lisboa. Los estudiantes implicados lograron construir conocimiento contextual sobre el uso de los medios en la generacion de sus abuelos y en la de sus padres en Portugal, actuando como facilitadores en los grupos de discusion, formados siempre por participantes de mayor edad, explorando las diferencias y similitudes intrageneracionales que emergen en grupos de diferente edad y llevando a cabo una reflexion critica sobre la experiencia en sus informes individuales. La eleccion de los grupos de discusion como herramienta para la investigacion y la eleccion del tema en el marco del Estudio de los Medios de Comunicacion resulto muy eficaz. Este articulo pretende defender la potencialidad de esta relacion intergeneracional entre los facilitadores y los miembros de los grupos de discusion como forma de activar la interaccion entre grupos, permitiendo, por ejemplo, que los participantes asuman una actitud explicativa para consigo mismos. Las notas finales que se presentan contemplan las ventajas de esta metodologia para la Educacion en Medios y para diferentes ramas del Estudio de los Medios, como la historia de los medios de comunicacion e historia social, el periodismo o la participacion politica.

Definitions and reliability assessment of elementary ultrasound lesions in giant cell arteritis: a study from the OMERACT Large Vessel Vasculitis Ultrasound Working Group

Objectives To define the elementary ultrasound (US) lesions in giant cell arteritis (GCA) and to evaluate the reliability of the assessment of US lesions according to these definitions in a web-based reliability exercise. Methods Potential definitions of normal and abnormal US findings of temporal and extracranial large arteries were retrieved by a systematic literature review. As a subsequent step, a structured Delphi exercise was conducted involving an expert panel of the Outcome Measures in Rheumatology (OMERACT) US Large Vessel Vasculitis Group to agree definitions of normal US appearance and key elementary US lesions of vasculitis of temporal and extracranial large arteries. The reliability of these definitions on normal and abnormal blood vessels was tested on 150 still images and videos in a web-based reliability exercise. Results Twenty-four experts participated in both Delphi rounds. From originally 25 statements, nine definitions were obtained for normal appearance, vasculitis and arteriosclerosis of cranial and extracranial vessels. The ‘halo’ and ‘compression’ signs were the key US lesions in GCA. The reliability of the definitions for normal temporal and axillary arteries, the ‘halo’ sign and the ‘compression’ sign was excellent with inter-rater agreements of 91–99% and mean kappa values of 0.83–0.98 for both inter-rater and intra-rater reliabilities of all 25 experts. Conclusions The ‘halo’ and the ‘compression’ signs are regarded as the most important US abnormalities for GCA. The inter-rater and intra-rater agreement of the new OMERACT definitions for US lesions in GCA was excellent.

Educar a jóvenes investigadores para el estudio del uso de los medios en las familias

En este articulo se presenta una experiencia de investigacion y formacion en el contexto del proyecto internacional de investigacion «Digital Inclusion and Participation» [Inclusion Digital y Participacion] (2009-11), en el que participaron investigadores y expertos de Portugal y EEUU (Texas). El objetivo principal del proyecto es analizar las condiciones y tendencias en el acceso y la distribucion de los medios digitales en manos de usuarios y no usuarios, con especial atencion hacia las familias y grupos mas vulnerables a la exclusion digital (mayores, inmigrantes, minorias etnicas y linguisticas). Ademas de este objetivo, se da un paso mas en la educacion en el ambito de los medios digitales, y en se repara en la formacion de estudiantes de posgrado a traves de un estudio supervisado de estos grupos sociales. Estos dos objetivos confluyeron en un Seminario Interdisciplinar de Metodos de Investigacion en Medios de Comunicacion y Periodismo (2009-10 y 2010-11), auspiciado por los autores de este articulo, procedentes de los Departamentos de Estudios Mediaticos y Sociologia, respectivamente. Este articulo incluye el proceso de investigacion y formacion que se puso en practica en el seminario. Se centra en la preparacion y supervision de los estudiantes, que realizaron entrevistas a miembros de familias de distintas generaciones y participaron en la adaptacion de las preguntas usadas originalmente en la Universidad de Texas en Austin, creando un guion narrativo centrado en la trayectoria vital y relaciones con los medios (vease el anexo). Tambien se contemplan los procesos de muestreo de las familias entrevistadas y se analizan en detalle las implicaciones que tiene en los estudiantes esta metodologia cualitativa de aprendizaje basado en la investigacion, asi como otras ventajas y deficiencias del proceso.

Do questions matter on children’s answers about internet risk and safety?

This article aims at understanding the construction of online risk and safety among children addressing the lack of research on children’s discourses on their internet experiences. The analysis compares the perceptions of Portuguese children (9-16) based on an open-ended question about online risk from the EU Kids Online survey and two open-ended questions about online safety from a survey of disadvantaged children. Theoretically, the article combines constructionist perspectives on risk with the framework and matrix used in EU Kids Online project. Methodological tools from cognitive sciences and from critical discourse analysis were used to explore children’s answers. These theories and methods contributed to capture children’s own discourses on online risk and safety, which are complex, often ambivalent and affected by hegemonic public discourses expressing media panics and fears. The analysis made visible how different wordings of questions may lead to different answers and to distinctive children’s positions, from apparently excluded of the risk situations to keen advisors of their peers on online safety.

Conectando generaciones: investigación y aprendizaje en educación en medios y estudios de audiencia Connecting Generations. A Research and Learning Approach for Media Education and Audience Studies

A partir de orientaciones teoricas y metodologicas previas sobre medios de comunicacion y generaciones, este articulo presenta un proceso de investigacion y aprendizaje a partir de la supervision del trabajo de campo desempenado por estudiantes licenciados en el Seminario del Master en Medios de Comunicacion en la Facultad de Humanidades y Ciencias Sociales de la Universidad Nueva de Lisboa. Los estudiantes implicados lograron construir conocimiento contextual sobre el uso de los medios en la generacion de sus abuelos y en la de sus padres en Portugal, actuando como facilitadores en los grupos de discusion, formados siempre por participantes de mayor edad, explorando las diferencias y similitudes intrageneracionales que emergen en grupos de diferente edad y llevando a cabo una reflexion critica sobre la experiencia en sus informes individuales. La eleccion de los grupos de discusion como herramienta para la investigacion y la eleccion del tema en el marco del Estudio de los Medios de Comunicacion resulto muy eficaz. Este articulo pretende defender la potencialidad de esta relacion intergeneracional entre los facilitadores y los miembros de los grupos de discusion como forma de activar la interaccion entre grupos, permitiendo, por ejemplo, que los participantes asuman una actitud explicativa para consigo mismos. Las notas finales que se presentan contemplan las ventajas de esta metodologia para la Educacion en Medios y para diferentes ramas del Estudio de los Medios, como la historia de los medios de comunicacion e historia social, el periodismo o la participacion politica.