scholarly journals The first European consensus on principles of management for achondroplasia

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Valerie Cormier-Daire ◽  
Moeenaldeen AlSayed ◽  
Tawfeg Ben-Omran ◽  
Sérgio Bernardo de Sousa ◽  
Silvio Boero ◽  
...  
Keyword(s):  
Growth Factor Receptor ◽  
Optimal Care ◽  
Policy Makers ◽  
Delivery Of Care ◽  
Guiding Principles ◽  
High Level ◽  
The Life Course ◽  
Patient Advocacy Groups ◽  
Level Of Agreement

AbstractAchondroplasia is the most common type of skeletal dysplasia, caused by a recurrent pathogenic variant in the fibroblast growth factor receptor 3 (FGFR3). The management of achondroplasia is multifaceted, requiring the involvement of multiple specialties across the life course. There are significant unmet needs associated with achondroplasia and substantial differences in different countries with regard to delivery of care. To address these challenges the European Achondroplasia Forum (EAF), a network of senior clinicians and orthopaedic surgeons from Europe and the Middle East representative of the achondroplasia clinical community, came together with the overall aim of improving patient outcomes. The EAF developed a consensus on guiding principles of management of achondroplasia to provide a basis for developing optimal care in Europe. All members of the EAF were invited to submit suggestions for guiding principles of management, which were consolidated and then discussed during a meeting in December 2020. The group voted anonymously on the inclusion of each principle, with the requirement of a 75% majority at the first vote to pass the principle. A vote on the level of agreement was then held. A total of six guiding principles were developed, which cover management over the lifetime of a person with achondroplasia. The principles centre on the lifelong management of achondroplasia by an experienced multidisciplinary team to anticipate and manage complications, support independence, and improve quality of life. There is focus on timely referral to a physician experienced in the management of achondroplasia on suspicion of the condition, shared decision making, the goals of management, access to adaptive measures to enable those with achondroplasia to access their environment, and the importance of ongoing monitoring throughout adolescence and adulthood. All principles achieved the 75% majority required for acceptance at the first vote (range 91–100%) and a high level of agreement (range 8.5–9.6). The guiding principles of management for achondroplasia provide all healthcare professionals, patient advocacy groups and policy makers involved in the management of achondroplasia with overarching considerations when developing health systems to support the management of achondroplasia.

scholarly journals Civil Society Engagement and Policy Representation in Europe

2019 ◽  
Vol 52 (11) ◽  
pp. 1648-1676 ◽  
Author(s):  
Anne Rasmussen ◽  
Stefanie Reher
Keyword(s):  
Social Capital ◽  
Public Opinion ◽  
Civil Society ◽  
Policy Issue ◽  
Civil Society Organizations ◽  
Civic Culture ◽  
Policy Makers ◽  
Policy Representation ◽  
High Level

Since Tocqueville linked the quality of democracy in America to its vibrant civic culture, studies have explored the relationship between social capital and the quality of governance. Yet, few have examined the mechanisms between individual components of social capital and democracy in depth. This study focuses on the link between one component of social capital, civil society engagement, and the linkage between public opinion and policy. It argues that engagement in associations with an interest in the policy issue may stimulate correspondence between public opinion and policy through their ability to collect and disseminate information to policy makers and the public. The analysis of 20 specific policy issues from 30 European countries confirms these expectations: Issues that experience a high level of associational engagement display a stronger relationship between public opinion and policy. The findings underline the role civil society organizations can play in policy representation beyond engaging in interest advocacy.

scholarly journals Validating Joint External Evaluation reports with the quality of outbreak response in Ethiopia, Nigeria and Madagascar

2019 ◽  
Vol 4 (6) ◽  
pp. e001655 ◽  
Author(s):  
Richard Garfield ◽  
Maureen Bartee ◽  
Landry Ndriko Mayigane
Keyword(s):  
Large Scale ◽  
External Evaluation ◽  
Outbreak Response ◽  
Large Measure ◽  
Health Security ◽  
Public Health Infrastructure ◽  
High Level ◽  
Joint External Evaluation ◽  
Level Of Agreement

To date more than 100 countries have carried out a Joint External Evaluation (JEE) as part of their Global Health Security programme. The JEE is a detailed effort to assess a country’s capacity to prevent, detect and respond to population health threats in 19 programmatic areas. To date no attempt has been made to determine the validity of these measures. We compare scores and commentary from the JEE in three countries to the strengths and weaknesses identified in the response to a subsequent large-scale outbreak in each of those countries. Relevant indicators were compared qualitatively, and scored as low, medium or in a high level of agreement between the JEE and the outbreak review in each of these three countries. Three reviewers independently reviewed each of the three countries. A high level of correspondence existed between score and text in the JEE and strengths and weaknesses identified in the review of an outbreak. In general, countries responded somewhat better than JEE scores indicated, but this appears to be due in part to JEE-related identification of weaknesses in that area. The improved response in large measure was due to more rapid requests for international assistance in these areas. It thus appears that even before systematic improvements are made in public health infrastructure that the JEE process may assist in improving outcomes in response to major outbreaks.

scholarly journals Investigating the nature and quality of locally commissioned evaluations of the NHS Vanguard programme: an evidence synthesis

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Paul Wilson ◽  
Jenny Billings ◽  
Julie MacInnes ◽  
Rasa Mikelyte ◽  
Elizabeth Welch ◽  
...  
Keyword(s):  
Service Delivery ◽  
Large Scale ◽  
Evidence Synthesis ◽  
Policy Makers ◽  
Delivery Of Care ◽  
Wide Range ◽  
Registration Number ◽  
Resource Data

Abstract Background With innovation in service delivery increasingly viewed as crucial to the long-term sustainability of health systems, NHS England launched an ambitious new model of care (Vanguard) programme in 2015. Supported by a £350 million transformation fund, 50 Vanguard sites were to act as pilots for innovation in service delivery, to move quickly to change the way that services were delivered, breaking down barriers between sectors and improving the coordination and delivery of care. Methods As part of a national evaluation of the Vanguard programme, we conducted an evidence synthesis to assess the nature and quality of locally commissioned evaluations. With access to a secure, online hub used by the Vanguard and other integrated care initiatives, two researchers retrieved any documents from a locally commissioned evaluation for inclusion. All identified documents were downloaded and logged, and details of the evaluators, questions, methodological approaches and limitations in design and/or reporting were extracted. As included evaluations varied in nature and type, a narrative synthesis was undertaken. Results We identified a total of 115 separate reports relating to the locally commissioned evaluations. Five prominent issues relating to evaluation conduct were identified across included reports: use of logic models, number and type of evaluation questions posed, data sharing and information governance, methodological challenges and evaluation reporting in general. A combination of resource, data and time constraints means that evaluations often attempted to but did not fully address the wide range of questions posed by individual Vanguards. Conclusions Significant investment was made in independent local evaluations of the Vanguard programme by NHS England. This synthesis represents the only comprehensive attempt to capture methodological learning and may serve as a key resource for researchers and policy-makers seeking to understand investigating large-scale system change, both within the NHS and internationally. PROSPERO (Registration number: CRD42017069282).

scholarly journals Deconstructing social cohesion: towards an analytical framework for assessing social cohesion policies

2012 ◽  
Vol 3 (2) ◽  
pp. 39-54
Author(s):  
Menno Fenger
Keyword(s):  
Social Cohesion ◽  
Analytical Framework ◽  
Policy Makers ◽  
Policy Initiatives ◽  
Multiple Dimensions ◽  
Perceived Importance ◽  
Important Quality ◽  
Multi Level ◽  
High Level

Academics as well as policy-makers consider social cohesion as an important quality of cities. A high level of social cohesion is associated with a wide variety of positive characteristics of cities: for instance low crime rates, high economic growth, low unemployment and happy citizens. This has lead to a wide variety of policy initiatives explicitly or implicitly aimed at increasing social cohesion. The perceived importance remarkably contrasts with the lack of a clear definition and a widely agreed-upon analytical framework. The lack of conceptual consensus may be explained by the complexity of the concept. It has multiple dimensions and can be found on different institutional levels: from the level of states to the level of local neighbourhoods. In this article I develop an analytical framework that builds upon these multi-dimensional and multi-level characteristics and connect this with an attempt to classify policies aimed at increasing social cohesion.

scholarly journals Perspective: Standards for Research and Reporting on Low-Energy (“Artificial”) Sweeteners

2020 ◽  
Vol 11 (3) ◽  
pp. 484-491 ◽  
Author(s):  
David J Mela ◽  
John McLaughlin ◽  
Peter J Rogers
Keyword(s):  
Research Process ◽  
Evidence Base ◽  
Low Energy ◽  
Policy Makers ◽  
The Public ◽  
Potential Risks ◽  
New Research ◽  
High Level

ABSTRACT Widely differing views exist among experts, policy makers, and the general public with regard to the potential risks and benefits of reduced- or low-energy sweeteners (LES) in the diet. These views are informed and influenced by different types of research in LES, with differing hypotheses, designs, interpretation, and communication. Given the high level of interest in LES, and the public health relevance of the research evidence base, it is important that all aspects of the research process are framed and reported in an appropriate and balanced manner. In this Perspective, we identify and give examples of a number of issues relating to research and reviews on LES, which may contribute toward apparent inconsistencies in the content and understanding of the totality of evidence. We conclude with a set of recommendations for authors, reviewers and journal editors, as general guidance to improve and better standardize the quality of LES research design, interpretation, and reporting. These focus on clarity of underlying hypotheses, characterization of exposures, and the placement and weighting of new research within the wider context of related prior work.

scholarly journals Being a caregiver in the palliative care unit in the pandemic: Who can do it better?

2021 ◽  
Keyword(s):  
Palliative Care ◽  
Palliative Care Unit ◽  
Single Male ◽  
Infection Transmission ◽  
Palliative Care Units ◽  
Level Of Knowledge ◽  
High Level ◽  
The Relationship ◽  
Level Of Agreement

Background: During the Coronavirus Disease-2019 (COVID-19) pandemic, palliative care units and nursing homes became risky in terms of infection transmission. The measures that are taken in the general population have also been strictly applied for caregivers. However, to achieve success, the personal compliance of the caregivers is as important as setting the rules. Objectives: This study aimed to evaluate the demographic characteristics, knowledge levels, and attitudes towards the measures taken for pandemics of the caregivers who were caring for their patients in the palliative care unit. It was also attempted to evaluate the relationship between these parameters and their quality of life (QOL). Methods: The level of knowledge and the level of agreement with the measures with questions prepared by three physicians working in the palliative care unit were assessed in this study. The QOL was also evaluated using the 3-level version of EQ-5D (EQ-5D-3L). Results: Education, employment, smoking, as well as parental and marital status, were found to be related to a high level of knowledge. It has been shown that the level of knowledge is higher in female caregivers and those who were caregiving for less than three years. The caregivers of Alzheimer's disease patients were also revealed to know more about the COVID-19 pandemic. Single, male, employed, smoking, and experienced less than three years caregivers were seemed to have a higher level of agreement with the measures. In addition, it was concluded that the QOL was positively correlated with the level of knowledge and negatively correlated with the compliance of the measures. Conclusion: It is essential to know the characteristics and beliefs of the caregivers in pandemic management in palliative care; accordingly, more studies should be conducted on this issue.

Explanations for High Levels of Infant Mortality in Pakistan - A Dissenting View

1989 ◽  
Vol 28 (3) ◽  
pp. 251-258
Author(s):  
Akbar Zaidi
Keyword(s):  
Infant Mortality ◽  
Infant Mortality Rate ◽  
High Rate ◽  
Social Scientists ◽  
Policy Makers ◽  
Underdeveloped Countries ◽  
Per Capita ◽  
High Level ◽  
Important Objective

Over the years, as social scientists and economists have become critical of simply using the GNP per capita statistic as the major indicator for the level of development, especially in the case of underdeveloped countries, other more sensitive indicators, which reflect a broader range than does the GNP per capita, have begun to be preferred. One of the most important indicators to replace or supplement the GNP per capita concept is the Infant Mortality Rate (IMR) statistic. The importance of this indicator as a reflector of the level of development is further enhanced when one considers the fact that it was one of the three indicators chosen by Morris (1979) for his monumental Physical Quality of Ufe Index. Thus, the careful observation over time of the IMR is an important, albeit still crude, sign for the way a country is progressing. And given this importance, it becomes one of the main targets which needs to be addressed by policy-makers. However, before one is able to implement measures that bring this rate down, i.e., pushing the 'policy package', it is necessary to study carefully the actual causes that result in the high rate. Seeking tlxplanations for a high level of infant mortality, thus, becomes an important objective. The paper by Sathar (1987) is an attempt to do so.

scholarly journals Teledentistry in the diagnosis of oral lesions: A systematic review of the literature

2020 ◽  
Vol 27 (7) ◽  
pp. 1166-1172 ◽  
Author(s):  
Anacláudia Pereira da Costa Flores ◽  
Samara Andreolla Lazaro ◽  
Cynthia Goulart Molina-Bastos ◽  
Verônica Lucas de Oliveira Guattini ◽  
Roberto Nunes Umpierre ◽  
...  
Keyword(s):  
Systematic Review ◽  
Dental Students ◽  
Care Quality ◽  
Rural Populations ◽  
Final Decision ◽  
Oral Lesions ◽  
Clinical Consultation ◽  
High Level ◽  
Level Of Agreement

Abstract Objective The purpose of this systematic review is to summarize information on the use of teledentistry in the diagnosis of oral lesions. Materials and Methods A systematic literature search conducted in August 2018 included articles published until December 2018 in 4 databases. Two reviewers evaluated the search results separately. If they were uncertain as to whether to include an article, a third reviewer made the final decision. Studies related to the diagnosis of oral lesions using teledentistry were included. The methodological quality of the studies was analyzed using the Quality Assessment of Studies of Diagnostic Accuracy. Results Eleven articles were included in the study. The selected articles were published between 1999 and 2018, predominantly in developing countries. The professionals acting as patient examiners are dental students and dentists, as well as other health professionals. Most of the patients evaluated in the studies were from rural populations or locations distant from large centers. The tools used to obtain patient data were smartphones, videoconference, email, questionnaires, histopathological exams, and telemedicine applications and systems. Most studies concluded that there is a high level of agreement between teledentistry and clinical consultation and that the use of this resource for diagnostic purposes can reduce costs and the travel time to consult a specialist personally. Nine of the 11 studies were of good quality. Conclusions Teledentistry has the potential to improve the care quality related to diagnosis and management of oral lesions, shortening distances between patients who need specialized diagnoses and specialists.

Preliminary studies of eye judgements of the gammons of bacon pigs in relation to dissection data

1960 ◽  
Vol 2 (2) ◽  
pp. 175-185 ◽  
Author(s):  
D. P. Gatherum ◽  
G. Harrington ◽  
R. W. Pomeroy
Keyword(s):  
Cross Sections ◽  
The Cross ◽  
High Level ◽  
Visual Assessments ◽  
Level Of Agreement

1. Attributes desired in the gammons of bacon pigs are discussed, together with the methods whereby they are measured.2. An experiment is described in which 16 judges made visual assessments of the qualities of the gammons of 10 carcasses of bacon weight from photographs, both of the fresh carcasses and of the cured bacon sides.3. The judges did not show a high level of agreement in their rankings of the gammons. Although the overall rankings by the panel of the gammons on the fresh carcasses and on the bacon sides were similar, neither ranking was related to the composition or yield of the gammons.4. The judges showed better agreement in their rankings of photographs of the cut surfaces of these 10 gammons and the cross-sections of the cooked gammons produced from them; in this case their preferences were related to the lean content of the gammons.5. A second trial in which 25 judges scored 12 actual bacon sides for the quality of their gammons showed an even lower level of agreement between the judges' rankings, and again there was little agreement between the overall rankings of the panel and the results of dissections.

Heart Rate Recovery Changes during Competition Period in High-Level Basketball Players

2018 ◽  
Vol 1 (80) ◽  
Author(s):  
Audrius Gocentas ◽  
Anatoli Landõr ◽  
Aleksandras Kriščiūnas
Keyword(s):  
Heart Rate ◽  
Heart Rate Recovery ◽  
Team Sports ◽  
Basketball Players ◽  
Coeffi Cients ◽  
Competition Period ◽  
Monitoring Training ◽  
Intense Training ◽  
High Level

Research background and hypothesis. Replete schedule of competitions and intense training are features of contemporary team sports. Athletes, especially the most involved ones, may not have enough time to recover. As a consequence, aggregated fatigue can manifest in some undesirable form and affect athlete’s performance and health.Research aim. The aim of this study was to evaluate the changes in heart rate recovery (HRR) and investigate possible relations with sport-specifi c measures of effi cacy in professional basketball players during competition season.Research methods. Eight male high-level basketball players (mean ± SD, body mass, 97.3 ± 11.33 kg; height 2.02 ± 0.067 m, and age 23 ± 3.12 years) were investigated. The same basketball specifi c exercise was replicated several times from September till April during the practice sessions in order to assess the personal trends of HRR. Heart rate monitoring was performed using POLAR TEAM SYSTEM. Investigated athletes were ranked retrospectively according to the total amount of minutes played and the coeffi cients of effi cacy. Research results. There were signifi cant differences in the trends of HRR between the investigated players. The most effective players showed decreasing trends of HRR in all cases of ranking.Discussion and conclusions. Research fi ndings have shown that the quality of heart rate recovery differs between basketball players of the same team and could be associated with sport-specifi c effi cacy and competition playing time.Keywords: adaptation, autonomic control, monitoring training.

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