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Funding Information: Dorinda da Silva acknowledge the funding from LA/P/0045/2020 (ALiCE), funded by national funds through FCT/MCTES (PIDDAC). Pedro Granjo was supported by CDG & Allies funding. Cláudia de Freitas acknowledges funding from the Foundation for Science and Technology-FCT under the Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR) (LA/P/0064/2020), the individual contract grant DL57/2016/CP1336/CT0001. Publisher Copyright: © 2023 by the authors. At least 50% of chronic disease patients don’t follow their care plans, leading to lower health outcomes and higher medical costs. Providing Patient Education Materials (PEMs) to individuals living with a disease can help to overcome these problems. PEMs are especially beneficial for people suffering from multisystemic and underrecognized diseases, such as rare diseases. Congenital disorders of glycosylation (CDG) are ultra-rare diseases, where a need was identified for PEMs in plain language that can clearly explain complex information. Community involvement in the design of PEMs is extremely important for diseases whose needs are underserved, such as rare diseases; however, attempts to involve lay and professional stakeholders are lacking. This paper presents a community-based participatory framework to co-create PEMs for CDG, that is transferable to other diseases. A literature review and questionnaire were performed, and only four articles describing the development of PEMS for rare diseases have been found, which demonstrates a lack of standardized approaches. The framework and PEMs were co-developed with CDG families and will be crucial in increasing health literacy and empowering families. We will close a gap in the creation of PEMs for CDG by delivering these resources in lay language in several languages. publishersversion published

UIDB/00183/2020 UIDP/00183/2020 Doubt is a double-edge sword. On the one hand, uncertainty is essential for epistemic progress, and yet, doubt can also make us vulnerable to deception, confused to the point of no longer knowing what is true. What distinguishes a doubt that is epistemologically beneficial from one which is deceptive, or even manufactured in the context of a conspiracy theory? In this chapter, we explore doubt, its role, and the way it is being handled in the context of the public controversy about the COVID-19 vaccine. We approach conspiracy theories as argumentative discourses and reconstruct the generic structure of a conspiracy theory macro argument. Through the structure, we look into the discourse of the twelve prominent anti-vaxxers known as the “Disinformation Dozen”, focusing on the argumentative potential that doubt can have in the public controversy about the COVID-19 vaccine. We suggest to distinguish ambivalence from scepticism and denialism as three argumentative potentials that a motivated doubt can have. We argue that ambivalent doubt ought to be acknowledged, addressed and incorporated into the public health narrative, in order to avoid that an unnecessarily broad interpretation of conspiracy theory dominates the public debate and leaves an uncertain public a prey to it. publishersversion published

UIDB/00183/2020 UIDP/00183/2020 SFRH/BPD/115073/2016 PTDC/FER-FIL/28278/2017 Background: Misunderstandings in medical interactions can compromise the quality of communication and affect self-management, especially in complex interactions like those in the assisted reproductive technology (ART) field. This study aimed to detect and describe misunderstandings in ART triadic visits. We compared first and follow-up visits for frequency, type, speakers, and topics leading to misunderstandings. Methods: We purposively sampled 20 triadic interactions from a corpus of 85 visits. We used a previously developed coding scheme to detect different types of misunderstandings (i.e., with strong, acceptable, and weak evidence). We analyzed also the different topics leading to strong misunderstandings (direct expressions of lack of understanding, pragmatic alternative understandings, semantic alternative understandings) to provide insights about the contents of the consultation that may need particular attention and care. Findings: We detected an overall number of 1078 misunderstandings in the 20 selected visits. First visits contained almost two-third of the misunderstandings (n = 680, 63%). First visits were particularly rich in misunderstandings with acceptable evidence (e.g., clarifications and checks for understanding), compared to follow-up visits. In first visits, doctors’ turns more frequently than couples’ turns contained misunderstandings, while in follow-up visits it was the other way around. Looking at the couple, the majority of the misunderstandings were expressed by the woman (n = 241, 22%) rather than by the man (n = 194, 18%). However, when weighting for their number of turns, 9% of the men’s turns included an expression of misunderstanding, compared to the 7% of the women’s turns. Finally, more than half of the misunderstandings with strong evidence were about history-taking and treatment-related topics, and while the history-taking ones were particularly frequent in first visits the treatment-related ones were more present in follow-up visits. Discussion: Findings indicate that first visits may deserve particular attention to avoid misunderstandings, as they are the moment where a shared understanding can be harder to reach. In particular, misunderstandings happening in first visits seem mostly related to physicians having to reconstruct the clinical history of patients, while those in the follow-up visits seem to reflect residual and unsolved doubts from the couple, especially concerning treatments. publishersversion published

The concept of physical and intellectual disability has experienced a series of changes and evolutions over time with regard to approach, classification and rehabilitation-therapeutic programs, since it contemplates a heterogeneous clinical phenomenology in terms of severity, complexity, pervasiveness and severity of the diagnosis. The significant repercussions on the quality of life mean that a comprehensive approach is required with attention to the physical, social, emotional, sensory and cognitive profile, and that there is a need for the adoption of classification systems and assessment tools that are different and in some ways pioneering, so as to guarantee the surpassing of the concept of disability as a "mere defect" physical and/or impairment and/or loss of psychological, physiological or anatomical function (Holden & Gitlesen 2003, Linden 2017, WHO 2001). It is exactly in contemplation of a biopsycho- social model, that the International Classification of Functioning, Disability and Health (ICF) arises, which possesses a neutral position with respect to etiology and a complementarity with the ICD-10 classification (WHO 2001), since it allows the functional diagnosis (i.e. a specialized analytical description of the potential and deficits in relation to the pathology) proposing a detailed analysis of the possible social consequences of disability by evaluating the residual capacities and measuring the "social skills" (WHO 2001).

In the NE Simbruini Mountains, the “Brecce della Renga Fm.” is a clastic unit documenting sedimentation controlled by late Miocene extensional tectonics.The unit has been subdivided into three lithofacies and six sublithofacies, based on the arenite/rudite/pelite ratio. Massive and coarser (up to megablock size) intervals are interpreted as rockfall deposits (likely induced by earthquakes) at the toe of steep submarine escarpments. By contrast, finer levels are interpreted as having been sedimented through avalanching and turbidity flows in more distal settings, and are partly lateral to basinal hemipelagites and siliciclastic turbidites. Pelite lenses, found at various stratigraphic levels, are the result of ponded sedimentation along the clastic margin. Calcareous nannofossils analyses have been performed for age determinations on 60 fossiliferous samples, which were collected in each sublithofacies of the “Brecce della Renga Fm.”. The unit ranges from early Tortonian (MNN8b) to early Messinian (MNN11c). The age and field geometries of the older breccias document the existence of a Tortonian extensional phase, which predated the late Messinian thrusting. A progradation of the clastic wedge can be observed in the Tortonian, while Messinian deposits show a fining upwards trend. The distribution curve of clastics over time can, given the number of synsedimentary faults mapped in the area, be put in relation with the seismicity induced by the activity along such faults, which after reaching an acme in the Tortonian gradually reached a quiescent state in the early Messinian, causing the backstepping of clastic facies., Rivista italiana di Paleontologia e Stratigrafia, Vol 120, No 2

BACKGROUND: Intracoronary injection of autologous bone marrow-derived mononucleated cells (BM-MNC) may improve LV function shortly after acute ST elevation myocardial infarction (STEMI), but little is known about the long-term durability of the treatment effect. METHODS: In a single-centre trial a total of 60 patients with acute anterior STEMI, successful reperfusion therapy and a left ventricular ejection fraction (LVEF) of