scholarly journals Italian national consensus statement on management and pharmacological treatment of phenylketonuria

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Alberto Burlina ◽  
Giacomo Biasucci ◽  
Maria Teresa Carbone ◽  
Chiara Cazzorla ◽  
Sabrina Paci ◽  
...  
Keyword(s):  
Disease Management ◽  
Good Practice ◽  
National Level ◽  
Real Life ◽  
Steering Committee ◽  
Evidence Based ◽  
Expert Survey ◽  
Survey Paper ◽  
Sapropterin Dihydrochloride ◽  
Consensus Group

Abstract Background Phenylketonuria (PKU) is a rare inherited metabolic disorder caused by defects in the phenylalanine-hydroxylase gene (PAH), the enzyme catalyzing the conversion of phenylalanine to tyrosine. PAH impairment causes phenylalanine accumulation in the blood and brain, with a broad spectrum of pathophysiological and neurological consequences for patients. Prevalence of disease varies, with peaks in some regions and countries, including Italy. A recent expert survey described the real-life of clinical practice for PKU in Italy, revealing inhomogeneities in disease management, particularly concerning approach to pharmacotherapy with sapropterin hydrochloride, analogous of the natural PAH co-factor, allowing disease control in a subset of patients. Therefore, the purpose of this paper is to continue the work initiated with the expert survey paper, to provide national guidances aiming to harmonize and optimize patient care at a national level. Participants The Consensus Group, convened by 10 Steering Committee members, consisted of a multidisciplinary crowd of 46 experts in the management of PKU in Italy. Consensus process The Steering Committee met in a series of virtual meeting in order to discuss on clinical focuses to be developed and analyzed in guidance statements, on the basis of expert practice based evidence, large systematic literature review previously performed in the expert survey paper, and evidence based consensus published. Statements were re-discussed and refined during consensus conferences in the widest audience of experts, and finally submitted to the whole consensus group for a modified-Delphi voting. Results Seventy three statements, divided in two main clinical areas, PKU management and Pharmacotherapy, achieved large consensus in a multidisciplinary group of expert in different aspects of disease. Importantly, these statements involve guidances for the use of sapropterin dihydrochloride, still not sufficiently implemented in Italy, and a set of good practice to approach the use of novel enzyme replacement treatment pegvaliase. Conclusions This evidence-based consensus provides a minimum set of guidances for disease management to be implemented in all PKU centers. Moreover, these guidances represent the first statement for sapropterin dihydrochloride use, implementation and standardization in Italy, and a guide for approaching pegvaliase treatment at a national level on a consistent basis.

scholarly journals Priorities for improving chemicals management in the WHO European Region—stakeholders’ views

2020 ◽  
Vol 30 (4) ◽  
pp. 812-817
Author(s):  
Joanne A Vincenten ◽  
Irina Zastenskaya ◽  
Peter Schröder-Bäck ◽  
Dorota Iwona Jarosinska
Keyword(s):  
Public Health ◽  
Negative Impact ◽  
Good Practice ◽  
National Level ◽  
World Health ◽  
Evidence Based ◽  
Political Commitment ◽  
Chemical Safety ◽  
Chemicals Management ◽  
The Impact

Abstract Background Prevention of the impact of chemicals on human health and the environment is an increasing focus of public health polices and policy makers. The World Health Organization European Centre for Environment and Health wanted to know what were stakeholders’ priorities for improving chemicals management and prevention. Methods Semi-structured interviews were undertaken with 18 diverse stakeholders to answer this question. The interview questionnaire was developed using current WHO chemical meeting reports, the Evidence Implementation Model for Public Health Systems and categories of the theory of diffusion. Stakeholder views were attained on three main questions within the questionnaire. (i) What priority actions should be undertaken to minimize the negative impact of chemicals? (ii) Who needs to be more involved and what roles should they have? (iii) How can science and knowledge on chemicals and health be translated into policies more effectively and what are the greatest barriers to overcome? Results Cross cutting issues, such as legislation strengthening and enforcement, further collection of information, capacity building, education and awareness raising were considered priorities. The responders had the same vision on roles and responsibilities of different stakeholders. The greatest barrier to adoption, implementation and enforcement of evidence-based policies reported was leadership and political commitment to chemical safety. Conclusions Priorities raised differed depending on knowledge, professional background and type of stakeholder. Factors influencing priority identification at the national level include international and global context, availability of information, knowledge of the current situation and evidence-based good practice, and risks and priorities identified through national assessments.

scholarly journals How to Develop and Implement Recommended Guidance for European Psychiatry?

2009 ◽  
Vol 24 (S1) ◽  
pp. 1-1
Author(s):  
W. Gaebel
Keyword(s):  
Health Care ◽  
Good Practice ◽  
Implementation Strategies ◽  
Steering Committee ◽  
Evidence Based ◽  
Pilot Work ◽  
Care Gaps ◽  
Clinical Questions ◽  
Methodological Aspects

One of the concrete projects resolved at the 2nd EPA European Platform of Psychiatrists meeting in Nice 2008 concerns the development and implementation of evidence-based treatment recommendations in psychiatry with an European dimension named "Recommended Guidance". The major objective is to improve quality of mental health care in Europe by providing evidence-based information and advice regarding core clinical questions and to identify and minimize health care gaps. As following steps it was targeted to establish a steering committee, to obtain clinical core priorities by contacting national psychiatric societies, to provide examples of good practice based on existing information, and to develop (first) "recommended guidance" for selected topics as pilot work. To promote this process, information regarding existing guidelines in psychiatry, methodological aspects of their development and evaluation as well as implementation strategies will be provided.

scholarly journals Luteal Phase Support in IVF: Comparison Between Evidence-Based Medicine and Real-Life Practices

2020 ◽  
Vol 11 ◽  
Author(s):  
Federica Di Guardo ◽  
Habib Midassi ◽  
Annalisa Racca ◽  
Herman Tournaye ◽  
Michel De Vos ◽  
...  
Keyword(s):  
Evidence Based Medicine ◽  
Luteal Phase ◽  
Real Life ◽  
Evidence Based ◽  
Luteal Phase Support ◽  
Based Medicine

Felnőttkori lágyéksérvek kezelésének alapelvei – az Európai Sérvsebészeti Társaság ajánlása

2010 ◽  
Vol 63 (5) ◽  
pp. 287-296 ◽  
Author(s):  
György Wéber
Keyword(s):  
Steering Committee ◽  
Evidence Based ◽  
European Hernia Society

Absztrakt Az Európai Sérvsebészeti Társaság (European Hernia Society – EHS) ajánlása a lágyéksérvek kezelésének teljes spektrumát magában foglalja, a diagnózistól a műtét utáni rehabilitációig. A vezérfonalat az EHS 14 tagországának vezető sérvsebészeiből álló munkacsoport állította össze. Az evidence-based megállapítások talaján álló ajánlást – megjelenése előtt – egy szaktekintélyekből álló steering committee mellett a tagországok sérvsebészeti társaságai is véleményezték. A „Guidelines”-t a 2008-as Európai Sérvsebészeti Kongresszuson, Sevillában külön szekcióban elemezték, illetve megjelent a Hernia 2009/4. számában. A munkacsoport tervei szerint az ajánlást 2012-ben ismét átdolgozzák, illetve tartalmát – a megjelenő közlemények és tapasztalatok alapján – folyamatosan aktualizálják. A vezérfonal könnyen adaptálható a helyi protokollokhoz, és jól szolgálja a továbbképzési, illetve minőségbiztosítási szempontokat, ezért fontosnak tartjuk szélesebb körben történő ismertetését.

scholarly journals Evaluating the national multisite implementation of dialectical behaviour therapy in a community setting: A mixed methods approach

2019 ◽  
Author(s):  
Daniel Flynn ◽  
Mary Joyce ◽  
Conall Gillespie ◽  
Mary Kells ◽  
Michaela Swales ◽  
...  
Keyword(s):  
Mixed Methods ◽  
National Level ◽  
Team Leader ◽  
Barriers And Facilitators ◽  
Future Research ◽  
Evidence Based ◽  
Community Settings ◽  
Team Leaders ◽  
Implementation Framework ◽  
Mixed Methods Approach

Abstract Background The implementation of evidence-based interventions for borderline personality disorder in community settings is important given that individuals with this diagnosis are often extensive users of both inpatient and outpatient mental health services. Although work in this area is limited, previous studies have identified facilitators and barriers to successful DBT implementation. This study seeks to expand on previous work by evaluating a coordinated implementation of DBT in community settings at a national level. The Consolidated Framework for Implementation Research (CFIR) [1] provided structural guidance for this national level coordinated implementation.Methods A mixed methods approach was utilised to explore the national multi-site implementation of DBT from the perspective of team leaders and therapists who participated in the coordinated training and subsequent implementation of DBT. Qualitative interviews with DBT team leaders ( n = 8) explored their experiences of implementing DBT in their local service and was analysed using content analysis. Quantitative surveys from DBT therapists ( n = 74) examined their experience of multiple aspects of the implementation process including orienting the system, and preparations and support for implementation. Frequencies of responses were calculated. Written qualitative feedback was analysed using content analysis.Results Five themes were identified from the interview data: team formation, implementation preparation, client selection, service level challenges and team leader role. Participants identified team size and support for the team leader as key points for consideration in DBT implementation. Key challenges encountered were the lack of system support to facilitate phone coaching and a lack of allocated time to focus on DBT. Implementation facilitators included having dedicated team members and support from management.Conclusions The barriers and facilitators identified in this study are broadly similar to those reported in previous research. Barriers and facilitators were identified across several domains of the CFIR and are consistent with a recently published DBT implementation Framework [2]. Future research should pay particular attention to the domain of characteristics of individuals involved in DBT implementation. The results highlight the importance of a mandated service plan for the coordinated implementation of an evidence-based treatment in a public health service.

scholarly journals Development of the Translating Allied Health Knowledge (TAHK) Framework

2019 ◽  
Vol 8 (7) ◽  
pp. 412-423 ◽  
Author(s):  
Danielle Hitch ◽  
Genevieve Pepin ◽  
Kate Lhuede ◽  
Sue Rowan ◽  
Susan Giles
Keyword(s):  
Knowledge Translation ◽  
Allied Health ◽  
Health Knowledge ◽  
Outcome Measurement ◽  
Steering Committee ◽  
Evidence Based ◽  
Collaborative Process ◽  
Academic Knowledge ◽  
Complex Process ◽  
Clinician Support

Background: While evidence-based practice is a familiar concept to allied health clinicians, knowledge translation (KT) is less well known and understood. The need for a framework that enables allied health clinicians to access and engage with KT was identified. The aim of this paper is to describe the development of the Translating Allied Health Knowledge (TAHK) Framework. Methods: An iterative and collaborative process involving clinician and academic knowledge partners was utilised to develop the TAHK Framework. Multiple methods were utilised during this process, including a systematic literature review, steering committee consultation, mixed methods survey, benchmarking and measurement property analysis. Results: The TAHK Framework has now been finalised, and is described in detail. The framework is structured around four domains – Doing Knowledge Translation, Social Capital for Knowledge Translation, Sustaining Knowledge Translation and Inclusive Knowledge Translation – under which 14 factors known to influence allied health KT are classified. The formulation of the framework to date has laid a rigorous foundation for further developments, including clinician support and outcome measurement. Conclusion: The method of development adopted for the TAHK Framework has ensured it is both evidence and practice based, and further amendments and modifications are anticipated as new knowledge becomes available. The Framework will enable allied health clinicians to build on their existing capacities for KT, and approach this complex process in a rigorous and systematic manner. The TAHK Framework offers a unique focus on how knowledge is translated by allied health clinicians in multidisciplinary settings.

scholarly journals The Use Of Geoinformation In Land Acquisition For Road Developments

2014 ◽  
Vol 22 (1) ◽  
pp. 29-35 ◽  
Author(s):  
Jan Kazak ◽  
Szymon Szewrański
Keyword(s):  
Good Practice ◽  
National Level ◽  
Land Acquisition ◽  
Raster Data ◽  
Administration System ◽  
Land Administration ◽  
Vector Version ◽  
Financial Consequences ◽  
Public Consultations

Abstract The development of new areas is associated with costs that partly burden public budgets. One example of such costs is the necessity of purchasing land for the construction of public roads. Geoinformation can be used to forecast such costs. In the era of transformation, the land administration system and transition from traditional (raster) data to an electronic (vector) version opens new possibilities for the use of geoinformation. Modern systems must satisfy certain requirements set out by the recipient as well as by legislation, on both the European and national level. They must also be powered by expertise gained in accordance with good practice. In this case, a property appraiser is the source of such information.. The study presents the possibility of using the CommunityViz system for forecasting the financial consequences of adopting the local plan for the area Jagodno II in Wroclaw. The paper also presents the possibility of using the results of the calculations during public consultations.

Which psychosocial interventions improve sex worker well-being? A systematic review of evidence from resource-rich countries

2021 ◽  
pp. bmjsrh-2021-201028
Author(s):  
Kevin Turner ◽  
Jane Meyrick ◽  
Danny Miller ◽  
Laura Stopgate
Keyword(s):  
Sex Workers ◽  
Real Life ◽  
Qualitative Evaluation ◽  
Psychosocial Interventions ◽  
Well Being ◽  
Evidence Base ◽  
Vulnerable Groups ◽  
Cochrane Library ◽  
Evidence Based ◽  
Eligibility Criteria

ObjectiveTo establish the state of the evidence base around psychosocial interventions that support well-being in sex workers in order to inform policy and practice within a resource-rich geographical context.MethodsPublished and unpublished studies were identified through electronic databases (PsychINFO, CINHAL Plus, MEDLINE, EMBASE, The Cochrane Library and Open Grey), hand searching and contacting relevant organisations and experts in the field. Studies were included if they were conducted in high-income settings with sex workers or people engaging in exchange or transactional sex, and evaluated the effect of a psychosocial intervention with validated psychological or well-being measures or through qualitative evaluation.ResultsA total of 19 202 studies were identified of which 10 studies met the eligibility criteria. The heterogeneity found dictated a narrative synthesis across studies. Overall, there was very little evidence of good quality to make clear evidence-based recommendations. Despite methodological limitations, the evidence as it stands suggests that peer health initiatives improve well-being in female street-based sex workers. Use of ecological momentary assessment (EMA), a diary-based method of collecting real-life behavioural data through the use of twice-daily questionnaires via a smartphone, increased self-esteem and behaviour change intentions.ConclusionsWork with sex workers should be based on an evidence-based approach. Limitations to the existing evidence and the constraints of this work with vulnerable groups are recognised and discussed.

Sign in / Sign up

Export Citation Format

Share Document