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In clinical medicine, shared decision making (SDM) is a well-recognized strategy to enhance engagement of both patients and clinicians in medical decisions. The success of liver-directed gene therapy (GT) to transform severe congenital haemophilia A (HA) from an incurable to a curable disease has launched a shift beyond current standards of treatment. However, GT acceptance remains low in the community of HA persons. We argue for both persons with haemophilia (PWH) and specialists in HA care including clinicians, as needing SDM-oriented educational programs devoted to GT. Here, we provide an ad hoc outline to implement education to SDM and tailor clinician information on GT to individual PWHs. Based on routine key components of SDM: patient priorities; recommendations based on individual risk reduction; adverse effects; drug-drug interactions; alternatives to GT; and ongoing re-assessment of the objectives as risk factors (and individual priorities) change, this approach is finalized to exploit efficacious communication.

Using the Fukushima accident experience, this letter discusses recent efforts on measuring scientific consensus views-that is, quantifying the agreement among scientists. In the field of radiological protection, the efforts to measure scientific consensus views deserve attention, because hoaxes have been spreading even after the Fukushima nuclear accident. We discussed two points. First, the visualization of the diversity of scientific opinions shatters the diversity illusion caused by the mass media\'s irresponsible dissemination of pro and con arguments. Second, the use of scientific consensus views without an ethical code is dangerous. Measuring scientific consensus views should be accompanied with the development of ethical guidelines on using it.

Little is known about young people\'s behaviors and responses under outbreaks of infectious diseases such as the COVID-19 pandemic, especially in institutional settings. This research investigated the reactions of young adults residing at Danish folk high schools (FHSs) towards COVID-19 guidelines and the communicative styles used to enforce COVID-19 guidelines. The qualitative data consists of focus group discussions (FGDs) with students, interviews with staff, and participant observations, as well as survey data from 1800 students. This study showed that young adults reacted negatively when first faced with the new reality of COVID-19 restrictions. They expressed distress over the loss of meaning (non-sense), loss of sense of community, as well as uncertainty. Hygiene guidelines, however, made immediate sense and were socially well accepted. Most FHSs actively involved students in risk communication and creative examples of community-building communication were identified. This study demonstrates that successful risk communication at educational institutions must take into consideration how young adults make sense of and cope with the uncertainties of life during crisis situations including epidemics.

OBJECTIVE: To assess the presentation of risk information in American College of Obstetricians and Gynecologists (ACOG) obstetrical Practice Bulletins.
METHODS: We reviewed B- and C-graded recommendations in Practice Bulletins published from January 2017 to March 2020. We calculated the proportion of recommendations and outcomes that were presented numerically and, of these, the proportion that were presented in accordance with best practices of risk communication - in absolute formats, or as absolute changes in risk from baseline risks. We categorized outcomes as harms or benefits to compare their risk presentation.
RESULTS: In 21 obstetrical Practice Bulletins, there were 125 recommendations, with 46 (37%) describing risks numerically. Sixteen of these 46 recommendations (35%) presented an absolute change in risk from a baseline risk. For harms, 65% were presented as absolute risks and 25% as relative risks. For benefits, this was 55% and 48% respectively.
CONCLUSIONS: Most recommendations do not present numeric risk information. Of those that do, most do not use absolute risk measures.
CONCLUSIONS: Obstetrical practice guidelines should present numerical risk information wherever possible to support recommendations, increasing the use of absolute risk formats and absolute changes from baseline risks to increase risk comprehension.

As increasing amounts of data accumulate on the effects of the novel coronavirus SARS-CoV-2 and the risk factors that lead to poor outcomes, it is possible to produce personalized estimates of the risks faced by groups of people with different characteristics. The challenge of how to communicate these then becomes apparent. Based on empirical work (total n = 5520, UK) supported by in-person interviews with the public and physicians, we make recommendations on the presentation of such information. These include: using predominantly percentages when communicating the absolute risk, but also providing, for balance, a format which conveys a contrasting (higher) perception of risk (expected frequency out of 10 000); using a visual linear scale cut at an appropriate point to illustrate the maximum risk, explained through an illustrative \'persona\' who might face that highest level of risk; and providing context to the absolute risk through presenting a range of other \'personas\' illustrating people who would face risks of a wide range of different levels. These \'personas\' should have their major risk factors (age, existing health conditions) described. By contrast, giving people absolute likelihoods of other risks they face in an attempt to add context was considered less helpful. We note that observed effect sizes generally were small. However, even small effects are meaningful and relevant when scaled up to population levels.

A comprehensive benchmarking exercise on current best practices on communication tools and dissemination processes of EU Member State organisations plus Iceland and Norway, selected ENVI EU agencies (EFSA, EMA, ECHA, ECDC), and EU bodies (DG SANTE, JRC, EU COUN) was carried out via an online survey, remote qualitative interviews, and a desk analysis of documents and web content.These current practices have been compiled into a catalogue of communication tools and a guide to their effective dissemination. Both elements are designed to help inform the EC General Plan for Risk Communication (GPRC)andfacilitate a coordinated communication framework at the EU and national level on matters relating to the food chain. The reportsets out a broad overview of the current tools that are commonly used, their intended communication purposes and target audiences. It also describes dissemination channels andmethods to optimise outreach. This work provides a solid platform for EU and Member State bodies to build on going forward. The report should be viewed as a living document that will evolve to meet fast-changing information needs and the requirements of the future GPRC.The catalogue highlights that multimedia tools show relatively high impact scores and high mention rates by the respondents participating in the online survey. Editorial tools are still very important, especially to reach the media. Both physical meetings and events and educational tools have very high impact scores but limited mention rates. All communication tools can be effective if properly designed (i.e. right content and tone of voice for the intended target audience(s) and disseminated through the right channels). Social media and the website are the most used dissemination channels. The reliance on campaigns is widespread as they help achieve a stronger impact on the target audience. Moreover, communication tools supported by best practices in dissemination perform much better and are used by a wider audience than tools that are merely published on an organisation\'s website. A systematic phased approach to dissemination (1. planning, 2. preparation, 3. publication and distribution, and 4. post-publication and distribution) is, therefore, crucial for a successful communication strategy. Effective leverage of amplifiers (planned and prepared in the first two phases) substantially increases communication tools\' outreach in the publication and distribution phase. The usage of Key Performance Indicators, set during the planning phase, allows an organisation to improve both communication tools and their dissemination strategy. Post-publication and distribution is a strategic phase to learn from the outcomes and fine-tune subsequent communication practices.

This short version of the interdisciplinary S3 guideline \"Peri- and Postmenopause-Diagnosis and Interventions\" is intended as a decision-making instrument for physicians who counsel peri- and postmenopausal women. It is designed to assist daily practice. The present short version summarizes the full version of the guideline which contains detailed information on guideline methodology, particularly regarding the critical appraisal of the evidence and the assignment of evidence levels. The statements and recommendations of the full version of the guideline are quoted completely in the present short version including levels of evidence (LoE) and grades of recommendation. The classification system developed by the Centre for Evidence-based Medicine in Oxford was used in this guideline.

The use of cardiovascular disease (CVD) prevention guidelines based on absolute risk assessment is poor around the world, including Australia. Behavioural barriers amongst GPs and patients include capability (e.g. difficulty communicating/understanding risk) and motivation (e.g. attitudes towards guidelines/medication). This paper outlines the theory-based development of a website for GP guidelines, and piloting of a new risk calculator/decision aid.
Stage 1 involved identifying evidence-based solutions using the Behaviour Change Wheel (BCW) framework, informed by previous research involving 400 GPs and 600 patients/consumers. Stage 2 co-developed website content with GPs. Stage 3 piloted a prototype website at a national GP conference. Stage 4 iteratively improved the website based on \"think aloud\" interviews with GPs and patients. Stage 5 was a feasibility study to evaluate potential efficacy (guidelines-based recommendations for each risk category), acceptability (intended use) and demand (actual use over 1 month) amongst GPs (n = 98).
Stage 1 identified GPs as the target for behaviour change; the need for a new risk calculator/decision aid linked to existing audit and feedback training; and online guidelines as a delivery format. Stage 2-4 iteratively improved content and format based on qualitative feedback from GP and patient user testing over three rounds of website development. Stage 5 suggested potential efficacy with improved identification of hypothetical high risk patients (from 26 to 76%) and recommended medication (from 57 to 86%) after viewing the website (n = 42), but prescribing to low risk patients remained similar (from 19 to 22%; n = 37). Most GPs (89%) indicated they would use the website in the next month, and 72% reported using it again after one month (n = 98). Open feedback identified implementation barriers including a need for integration with medical software, low health literacy resources and pre-consultation assessment.
Following a theory-based development process and user co-design, the resulting intervention was acceptable to GPs with high intentions for use, improved identification of patient risk categories and more guidelines-based prescribing intentions for high risk but not low risk patients. The effectiveness of linking the intervention to clinical practice more closely to address implementation barriers will be evaluated in future research.

Clinical practice guidelines (CPGs) are typically written for health care professionals but are meant to assist patients with health care decisions. A number of guideline producers have started to develop patient versions of CPGs to reach this audience.
To describe the content and purpose of patient versions of CPGs and compare with patient and public views of CPGs.
A descriptive qualitative study with a directed content analysis of a sample of patient versions of CPGs published and freely available in English from 2012 to 2014.
We included 34 patient versions of CPGs from 17 guideline producers. Over half of the patient versions were in dedicated patient sections of national/professional agency websites. There was essentially no information about how to manage care in the health care system. The most common purpose was to equip people with information about disease, tests or treatments, and recommendations, but few provided quantitative data about benefits and harms of treatments. Information about beliefs, values and preferences, accessibility, costs, or feasibility of the interventions was rarely addressed. Few provided personal stories or scenarios to personalize the information. Three versions described the strength of the recommendation or the level of evidence.
Our search for key institutions that produce patient versions of guidelines was comprehensive, but we only included English and freely available versions. Future work will include other languages.
This review describes the current landscape of patient versions of CPGs and suggests that these versions may not address the needs of their targeted audience. Research is needed about how to personalize information, provide information about factors contributing to the recommendations, and provide access.