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Programmazione dei servizi e degli interventi a favore delle persone affette da sclerosi laterale amiotrofica
Full text linkAmyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterized by progressive muscular paralysis reflecting degeneration of motor neurons in the primary motor cortex, corticospinal tracts, brainstem and spinal cord. Incidence (average around 1/50,000 per year) and prevalence (average around 1/20,000) are relatively uniform in Western countries, although foci of higher frequency have been reported in the Western Pacific. Overall, there is a slight male preponderance (male to female ratio of around 1.5:1). The mean age of onset for sporadic ALS is about 60 years. There are cases of patients with the disease in younger age. The onset of ALS is very insidious because the spectrum of symptoms is mostly similar to other neurodegenerative diseases. A specific diagnostic test does not yet exist and the course is variable and depends on the spinal or bulbar form. In some cases the course of disease is very rapid with a progressive loss of autonomy caused by the sudden aggravation of the symptoms which needs irreversible decisions and treatments (e.g. tracheostomy and PEG). A specific and resolutive therapy does not exist, but there are treatments aimed at improving patients quality of life: riluzole, that is the only drug that has been shown to extend survival, symptomatic treatments for sialorrhoea, cramps, pains and insomnia and rehabilitative devices to help the partial autonomy. Not least is the psychological impactof the disease include not only the patients but also on their families.
Because of the pathology features and the patients needs, in the public health strategies for rare diseases, a specific management and care protocol has been created only for ALS patients.
The project has been divided into several distinct phases.
At first, the care pathway has been created, taking into account the special needs and the aid services for the ALS patients. In accordance with the Wide Area Agreement (Veneto Region law no 2046 of 3rd July 2007), an interregional working group has been established. Skilled specialists were members of this task force to draw proposals for the protocol and the common guidelines. The interregional and multidisciplinary staff was made up of different health professionals (neurologists, pulmonologists, physiotherapists, coroner), workers of territorial public health agencies and patients associations from the Wide Area (i.e. Veneto Region, Friuli Venezia Giulia Region and Autonomous Provinces of Trento and Bolzano).
In accordance with the Evidence Based Medicine method, a critical review of current scientific evidence has been added to the personal experience of the working group members. International Scientific Societies documents and guide lines have been collected as well.
Work has taken place in the Veneto Rare Diseases Coordination offices and in the distance meetings. A web application has allowed to consult and download bibliography, post comments on definitions and treatment suggested and view the ones inserted by other participants. It was possible to have more information on the ALS patients situation, using the data from official sources (e.g. Veneto Region Rare Disease Register and territorial public health agencies).
A questionnaire-interview with 130 questions has been created. It was divided into various parts, each reflecting a different topic area. The questionnaire was aimed at knowing the patients and relatives needs, difficulties and problems in their daily life and identifying some possible suggests on their care program.
Consequently, new tools are provided to facilitate the transfer of knowledge and experience acquired in the previous steps and improve the level of the participation and collaboration of the different actors (health workers, patients representatives, etcetera). These tools have been chosen: the Agreement between Central State and Regions, the different regional laws on rare diseases, especially on ALS, the therapeutic protocols and care guide lines, the help line activities of the Veneto Rare Diseases Coordination, the interregional working group actions, the Coordination web site and the web application for the distance meeting and distance learning courses.
Due to the variety of the care, the multidisciplinary and the importance of the patients needs, the Wide Area members have decide to enhance the current informatic system for rare diseases, creating a dedicated folder for ALS. The goal was to use an unique language and information source.
Connecting all labelled reference centres, all territorial public health agencies, local pharmacies and hospitals - and in the future also the rehabilitation centres and the invalidity committee – this computerized system could be the first step for a homogenous and equal care system in the Wide AreaLa sclerosi laterale amiotrofica (SLA) è una malattia rara neurologica degenerativa e progressiva che presenta un'incidenza di 1 ogni 50.000 individui all'anno e una prevalenza di circa 1/20.000 relativamente uniformi nei paesi Occidentali; aree con una prevalenza maggiore sono state riportate nel Pacifico Occidentale. Il un rapporto M:F è quasi eguale, ma con una lieve preferenza per il genere maschile (1,5:1). L’esordio della forma sporadica si situa a 60 anni circa ma non mancano casi di persone che manifestano la malattia in età più giovanile. Il suo esordio è solitamente molto insidioso presentando una varietà di sintomi comuni ad altre malattie neurodegenerative. Non vi è ancora un test diagnostico specifico per tale malattia ed il suo decorso è variabile a seconda della forma spinale o bulbare. In alcuni casi è molto rapido con una progressiva perdita dell’autonomia causata da repentini peggioramenti della sintomatologia che richiedono decisioni e trattamenti talora irreversibili come la tracheostomia e la PEG. Non esiste una terapia specifica risolutiva ma tutta una serie di provvedimenti atti a migliorare la qualità di vita di questi pazienti: il riluzolo che sembra il trattamento, ad oggi, maggiormente in grado di rallentarne il decorso, le terapie sintomatiche per il trattamento della scialorrea, dei crampi, dei dolori, dell’insonnia, i presidi e gli ausili per favorire l’autonomia residua. Non ultimo è da annoverare l’impatto psicologico della patologia non solo sui pazienti ma anche sui loro familiari.
Per le caratteristiche proprie di questa patologia ed i bisogni delle persone che ne sono affette, all’interno dei piani di programmazione sanitaria a favore delle persone con malattia rara, si è deciso di creare un protocollo di assistenza e di presa in carico globale specifico per le persone con Sclerosi Laterale Amiotrofica.
Il progetto nella sua complessità è stato articolato in diverse fasi distinte. Inizialmente è stato necessario definire il percorso assistenziale e terapeutico tenendo conto dei bisogni peculiari delle persone affette da SLA e dei servizi di assistenza a loro dedicati. Come previsto dall’Accordo di Area Vasta (D.G.R. del Veneto n. 2046 del 3/07/2007), è stato insediato un Gruppo di Lavoro interregionale costituito da interlocutori privilegiati ai quali è stato affidato il compito di elaborare proposte per la definizione del protocollo stesso e per la produzione di linee guida concordate. Il Gruppo di Lavoro interregionale e multidisciplinare, era costituito da operatori provenienti dalle diverse realtà dell’Area Vasta (costituita da Regione Veneto, Regione Friuli Venezia Giulia e Province Autonome di Trento e Bolzano) e di diversa background professionale (neurologi, pneumologi, fisioterapisti, riabilitatori, medici legali) ma anche rappresentanti dei sevizi territoriali e delle associazioni d’utenza. Alla individuale esperienza portata dai singoli componenti del Gruppo si è affiancata una valutazione critica degli studi esistenti in letteratura scientifica secondo il metodo dell’Evidence Based Medicine (EBM) ricercando i migliori risultati tratti da Studi clinici (Clinical Trials) controllati e linee-guida di pratica clinica. Sono stati inoltre raccolti documenti e linee-guida prodotti da gruppi di lavoro di società scientifiche internazionali. L’attività del Gruppo di Lavoro si è svolta durante gli incontri presso la sede del Coordinamento Malattie Rare e durante gli incontri a distanza per i quali è stato predisposto un sistema web-based attraverso il quale consultare e scaricare il materiale bibliografico e inserire propri commenti su definizioni e/o trattamenti proposti, nonché visualizzare quelli inseriti dagli altri partecipanti. Si è continuato con l’ottenere una fotografia dei soggetti con SLA presenti nel territorio tramite i dati rilevabili da fonti ufficiali come il Registro Malattie Rare della regione Veneto e i servizi territoriali. Con l’obiettivo di capire i bisogni urgenti del paziente e la sua famiglia, difficoltà e criticità del percorso di ognuno e cogliere eventuali suggerimenti su come approntare il programma assistenziale a loro rivolto, è stato realizzato un questionario-intervista costituito da 130 item suddivisi per Aree di indagine.
Sono stati in seguito realizzati strumenti atti da una parte a trasferire nella pratica le conoscenze ottenute dalle due fasi precedenti e dall’altra a riorientare l’attitudine dei vari attori coinvolti, in diverso modo, nell’assistenza delle persone affette da SLA con il fondamentale intento di aumentare la loro partecipazione e collaborazione. Gli strumenti scelti sono stati: l’Accordo Stato Regioni, le varie delibere regionali per le malattie rare e nello specifico per la Sclerosi Laterale Amiotrofica, i protocolli terapeutici e le linee guida assistenziali, l’attività della linea telefonica presente presso il Coordinamento Malattie Rare, la continua attività dei Gruppi di Lavoro, il sito internet del Coordinamento, il sito web per gli incontri a distanza e i corsi di formazione.
Proprio per l’eterogeneità dell'assistenza fornita, la multidisciplinarietà coinvolta ed i bisogni assistenziali importanti, al fine di un unico linguaggio e un'unica fonte informativa, le Amministrazioni delle Regioni e delle Province autonome dell'Area Vasta hanno definito di potenziare il sistema informativo già in uso per la gestione delle malattie rare creando una cartella specifica dedicata alla SLA. Questo unico sistema computerizzato, collegando tutti i Centri accreditati, tutti i Distretti Sanitari e i Servizi Farmaceutici territoriali ed ospedalieri e, con il futuro obiettivo di aprirsi poi anche ai servizi di riabilitazione e alle commissioni di invalidità, vuole essere un primo passo per una assistenza equa ed omogea su tutto il territorio dell’Are
Diagnosis of pervasive developmental disorders: when and how? An area-based study about health providers
No full textBackground: Pervasive developmental disorders (PDDs) can be very difficult to diagnose in children and to communicate such a diagnosis to their parents. Families of children with PDD learn of their child’s diagnosis long after the first symptoms are noted in the child’s behavior.
Methods: An area-based survey was conducted to assess all social and health care providers taking care of patients with PDDs in the Veneto Region (North-East Italy).
Results: Only 28% of health care providers arrived at a definite diagnosis when the child was in his/her first year of age, 51% when the child was 2–3 years old and 21% from age of 4 years and up. On average, the latency between the time of the diagnosis and its communication to the family was 6.9 months. However, a number of families did not ever have a diagnosis communicated to them. Sometimes, 68% of the providers did not communicate a PDDs diagnosis to patient’s families, and 4% of them quite commonly.
Conclusion: The well-known delay in making a diagnosis of PDDs has two distinct components: one relating to the difficulty of confirming a diagnosis of PDDs, the other, hitherto unrecognized, relating to the family being notifie
Going Beyond Counting First Authors in Author Co-citation Analysis
Full text linkThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Full text link“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Appropriate Similarity Measures for Author Cocitation Analysis
Full text linkWe provide a number of new insights into the methodological discussion about author cocitation analysis. We first argue that the use of the Pearson correlation for measuring the similarity between authors’ cocitation profiles is not very satisfactory. We then discuss what kind of similarity measures may be used as an alternative to the Pearson correlation. We consider three similarity measures in particular. One is the well-known cosine. The other two similarity measures have not been used before in the bibliometric literature. Finally, we show by means of an example that our findings have a high practical relevance.information science;Pearson correlation;cosine;similarity measure;author cocitation analysis
Dispelling the Myths Behind First-author Citation Counts
Full text linkWe conducted a full-scale evaluative citation analysis study of scholars in the XML research field to explore just how different from each other author rankings resulting from different citation counting methods actually are, and to demonstrate the capability of emerging data and tools on the Web in supporting more realistic citation counting methods. Our results contest some common arguments for the continued
use of first-author citation counts in the evaluation of scholars, such as high correlations between author rankings by first-author citation counts and other citation
counting methods, and high costs of using more realistic citation counting methods that are not well-supported by the ISI databases. It is argued that increasingly available digital full text research papers make it possible for citation analysis studies to go beyond what the ISI databases have directly supported and to employ more
sophisticated methods
koamabayili/VECTRON-author-checklist: VECTRON author checklist
No full textWe have done our best to complete the author checklist relating to the use of animals in the hut study. Note that the objective for the hut study was to evaluate the IRS treatment applications for residual efficacy against Anopheles mosquitoes, including the local An. coluzzii mosquito population. Cows were only used to attract mosquitoes into the huts and no tests were carried out directly on the cows. The author checklist is intended for use with studies where experiments are carried out on animals, which is why we have had such difficulty in completing this for the hut study, as many of the questions do not relate to how the cows were used
Author-wise bibliometric analysis based on entropy.
No full textAuthor-wise bibliometric analysis based on entropy.</p
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