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Rare diseases represent a numerous (more than 30 million patients throughout Europe), diverse (more than 6000 disease ascertained), and complex group of genetic, metabolic, neurologic, congenital and other type of disorders presenting both in pediatric and adult age. Research, education and care are the mainstay of the national rare disease plans of the member states, including Italy. Early diagnosis and multidisciplinary care, particularly in severe or progressive disorder, are mandatory to treat disorders (when a specific treatment is available) and/or avoid life-threatening complications. According to the catchphrase "you can only diagnose what you know", it is intuitive how important is education and the "culture of suspect" in rare disease. In the last decade, a pre- and post-graduate academic planning on rare disease have been set up in Italy, with the aim to be comprehensive and up-to-date with the literature, traversal to both general physicians and all the specialties, longitudinal during all the study courses.

The covid-19 emergency in the words of the nurses . This special issue of AIR is dedicated to the direct professional experiences and personal testimonies of a sample of the nursing personnel during the most dramatic phase of the covid-19 pandemia in the most severely affected regions of Northern Italy (Lombardy, Piedmont, Veneto, Friuli, Trentino, Emilia Romagna Regions). The decision to adopt a research strategy aimed to give visibility and voice to colleagues representing some of the key hospitals of the regions obliged to a radical reorganisation of their structures and organisation of care, was adopted to catch from inside the crisis scenarios the expected mix of intense emotions (from anxiety, to fatigue, to personal and professional uncertainty, to the burden of impotence), and of needed technical creativity and efficiency which were requested to face a totally unexpected situation where guidelines could hardly be of help. The interview/diaries/focus groups were carefully planned not so much in terms of the contents, but with attention to the acceptance of the interviewed to enter in a free dialogue, with no QA, to be recorded, and to last for the time felt to be by both sides appropriate. The texts which are reported in this dossier are fragments of the recordings (overall more then 30 hours), without adjustments. It has been agreed that while all the names of the participants are provided as 'authors', the individual contributions are anonymous (not out of privacy consideration!) as they are part of a collective narrative, which reflects the great variability of the languages and of the perceived-expressed experiences and memories. The material has been organised in sections which are conceived as 'verbal snapshots' taken from the networks of care settings, but at the same time of the places and houses where the colleagues were literally full-time living, to assure unaccountable overtime working hours, and the requested 'safety distances' and lockdowns. The titles of the 8 sections coincide somehow with the principal components of the chain of activities and challenges which had to be faced: The changes in everyday's care, How to be prepared to the emergency, The teamwork, The loneliness and the isolation of the patients, The loneliness of the nurses, The difficult choices, The organization of the work and of the wards, change after covid-19. The core of the dossier is framed by boxes which provide also a minimum background of the administrative and epidemiological data on the pandemia in the regions of interest (it is interesting to remind that the central-southern areas of Italy have been far less affected), and a brief concluding reflection on reflection on the post-pandemia from the nursing point of view.

The indicators used in the Italian National Outcome Strategy does not include measurement of nursing care outcomes so these have not yet been assessed systematically in our country but only in the context of specific research projects. Positive and negative outcomes of nursing care have been documented in the literature, the latter associated with missed nursing care, a phenomenon that occurs when conditions are such that nurses are unable to deliver planned care to patients.To describe the rationale, methodology and main results achieved to date in the development of a regional policy aimed at establishing a panel of indicators for monitoring nursing care-sensitive outcomes hospitals in publicly funded hospitals in the Veneto Region (northern Italy).A plurennial, multi-method project based on [1] identification of selection criteria for a Minimum Data Set of indicators; [2] a rapid review of the literature and of the policies established internationally to measure nursing care-sensitive outcomes; [3] the establishment of an initial panel of indicators and evaluation of any critical issues with the chosen indicators, and [4] identification of the most appropriate tool for measuring missed nursing care.The medical and surgical units were considered to be the most suitable settings for the pilot study. Following the literature review, indicators that were already being monitored in the current regional information system were chosen, with the intent to prevent an additional administrative burden to nurses. By using a progressive consensus process, five outcome indicators (functional status, falls, pressure sores, urinary tract infections, aspiration pneumonia) and one process indicator (missed nursing care) were selected., and the tools for measuring the above-mentioned indicators and their related risks, were identified. A regional policy was then established to measure these indicators in a pilot phase, with the intent of implementing them as stable indicators to be measured in the new computerized hospital information system.An initial panel of nursing-sensitive outcome indicators has been defined to be used in Internal Medicine and General Surgery units of hospitals in Italy's Veneto Region. Despite its limitations, the project represents the first effort to create a regional policy to measure the contribution of nursing care to the health outcomes of patients and that will also the identification of potential relations with other variables such as personnel staffing and/or skill mix.

The Clinical Learning Quality Evaluation Index for nursing students.The Italian nursing programs, the need to introduce tools evaluating the quality of the clinical learning as perceived by nursing students. Several tools already exist, however, several limitations suggesting the need to develop a new tool.A national project aimed at developing and validating a new instrument capable of measuring the clinical learning quality as experience by nursing students.A validation study design was undertaken from 2015 to 2016. All nursing national programs (n=43) were invited to participate by including all nursing students attending regularly their clinical learning. The tool developed based upon a) literature, b) validated tools already established among other healthcare professionals, and c) consensus expressed by experts and nursing students, was administered to the eligible students.9606 nursing in 27 universities (62.8%) participated. The psychometric properties of the new instrument ranged from good to excellent. According to the findings, the tool consists in 22 items and five factors: a) quality of the tutorial strategies, b) learning opportunities; c) safety and nursing care quality; d) self-direct learning; e) quality of the learning environment.The tool is already used. Its systematic adoption may support comparison among settings and across different programs; moreover, the tool may also support in accrediting new settings as well as in measuring the effects of strategies aimed at improving the quality of the clinical learning.

A qualitative/quantitative study in two phases was undertaken to describe the economical crisis intensity, cost-containment interventions adopted locally, and their effects perceived in daily practice by Italian nurses. The main economic crisis effects reported by nurses were (a) the staff stress level has increased, (b) patients with social problems have increased, and (c) the workload has increased. Overall, nurses perceived moderate disadvantages due to the economical crisis; several cost-containment measures have been adopted at different levels of the National Health Service. atients in general seem frailer and nurses working in the community centers also seem frailer compared with nurses working at the hospital level. Changes in daily nursing practice both at the hospital and community levels are warning signs that should be monitored carefully for both their short and long-term negative impacts on patients, nurses, and the National Health Service.