Quality of life in children and adolescents with congenital heart disease

Purpose: The Quality of life is currently a major topic discussed in our society. The World Health Organization (WHO) has been developing a unifying and transcultural definition of QOL. They considered it as 'the individual's perception of his or her position in life, within the cultural context and value system he or she lives in, and in relation to his or her goals, expectations, parameters and social relations. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships and their relationship to salient features of their environment (WHOQOL, 1997, p. 1). Congenital heart disease is the most prevalent congenital disease in Portugal. Despite the advances in cardiac treatment and an early correct diagnosis that could increase the survival of children with congenital heart disease, this condition influences the quality of life of children, adolescents and their parents. Knowing the perception of quality of life could help healthcare professionals, nurses in particular, providing suited care to the needs of these families, establishing priorities in their interventions, sensing predictors of a poor quality of life, promoting adherence to treatment and boosting compliance with treatment, and fostering greater satisfaction for these children, adolescents and their parents. 'As part of broader research and with the awareness that the chronic conditions could impact the quality of life and considering that all advances on treating congenital cardiac diseases we have defined this main objective: To determine the quality of life in children and adolescents with congenital heart disease (CHD) and the perception of their parents, as well as factors that influence it. Methods: It is a quantitative, descriptive and correlational research. The data collection tool was a questionnaire, which consisted of four parts: socio-demographic and educational characteristics, clinical characteristics, and quality of life, obtained using the Pediatric Cardiac Quality of Life Inventory ? PCQLI - (Marino, Tomlinson, Wernovsky, Drotar , Newburger, Mahony et al., 2010) translated into Portuguese. Data collection took place between February and July 2014, in compliance with ethical research guidelines. The sample comprised 59 children, 59 parents of children, 80 adolescents and 80 parents of adolescents. Results: The results indicated that children, adolescents, and their parents have high level of perceived health. The results are similar in all groups: children and parents and adolescents and parents. In the group of children, we observed the classification of "Good" in 66.10%, followed by the "Very Good" at 18.65% and "fair" in 15.25% of cases. The parents of the children responded in about half the cases that the health of their children was "good" (50.85%), "very good" in 30.51% "fair" in 11.86% and "Excellent "in 6.78%. In turn, the group of adolescents can be seen that 46.25% rate their health as "good", 32.50% as "very good", 16.25% as "Average" and 5% as "Excellent". Parents of teenagers classify the health of their children mostly as "good" in 42.50%, 31.25% as "very good", 20% as "fair" and 6.25% as "excellent". To point out that none of the respondents pointed out the option of a health status "Bad". About the quality of life, in general the results indicated that children, adolescents and their parents have high levels of quality of life, and that perceptions of parents and children are similar. Only in the children?s group (8 to 12 years old), was no influence of socio-demographic, school or clinical variables on quality of life observed. For adolescents (13 to 18 years old), school, special education, school retention, the age of diagnosis of congenital heart disease, cardiac catheterization and surgical intervention influenced their quality of life. Perception of quality of life of parents of children and of adolescents was influenced by socio-demographic and clinical variables. The results partly agree with the literature in this field. About the influence of some variables: The perception of quality of life expressed by children and adolescents with congenital heart disease and parents are related, with statistical significance. There were no statistically significant relationships between the quality of life of children and adolescents and their age, gender or socioeconomic status. Adolescents differ statistically significant between their quality of life and their education, the frequency of special education and the existence of grade retention. The severity of heart disease, the number of cardiac catheterizations or surgery and the presence of other health disorders are unrelated to the quality of life of children and adolescents. Adolescents revealed that the level of quality of life is influenced by the age of diagnosis of CHD by cardiac catheterization and surgery. For parents of children and adolescents gender and their education don?t influence their perception of quality of life. Only the socioeconomic status of parents of teens has statistically significant difference to quality of life. Parents of children and adolescents do not show statistically significant relationship between the perceived level of quality of life and severity of disease, age at diagnosis, the number of surgical interventions and the existence of other health disorders. There is a relationship of statistical significance between cardiac catheterization and the perceived quality of life by parents of adolescents; between the number of cardiac catheterizations and the perception of quality of life of parents of children; and between performing surgery and the perception of parents of children and adolescents. Conclusion: To analyze the quality of life of children and adolescents with CHD must be a key focus of attention in caring for this population, allowing the identification of individual differences, interests, preferences, and prevent potential problems. The knowledge acquired along with clinical experience contributes to improve the quality of life of children and families, facilitating their growth, psycho-emotional development and social integration. Nevertheless, the reading and interpretation of these results must be prudent and cautious, there are limitations to this research, including: the use of a range of specific quality of life for the Congenital heart disease in children, adolescents, and parents but whose validation process could not be completed in this study; the low prevalence of severe conditions in our sample; the absence of national studies to enable comparison with the results obtained. We intend to continue the process of validation of instrument and enlarge the research to Lisbon and Oporto, other major centers where the cardiac conditions can be treated.

Tannins in Ruminant Nutrition: Impact on Animal Performance and Quality of Edible Products

Tannins are widespread throughout the plant kingdom, occurring as hydrolysable and condensed tannins and at different levels in several animal feeding sources. Recent years have seen an increasing interest in the use of tannin-rich plants and plant extracts in ruminant diets for improving the quality of their edible products. Some results show that this strategy is effective in improving the fatty acid profile of meat and milk, increasing the level of health-beneficial fatty acids as well as enhancing the oxidative stability of the products. However, the use of tannin-rich feed in animal diets requires great care, due to its possible detrimental effects on animal performance and induction of metabolic disorders. Although promising, the results of studies on the effects of tannins on animal performance and quality of their products are still controversial, probably depending on type and chemical structure of tannins, amount ingested, composition of diet, and species of animal. In this chapter, the current knowledge regarding the effect of dietary tannins on animal performance and the quality of their products (meat and milk), particularly on the fatty acid profile, oxidative stability, and organoleptic properties, is reviewed. The tannin chemistry diversity and its occurrence in ruminant diets, as well as its beneficial and adverse effects on ruminants, will be briefly reviewed, and aspects related to oral cavity physiology, saliva production/composition, and postingestive effects will also be discussed.

Quality improvement of traditional dry fermented sausages based on innovative technological strategies

Dry fermented sausages are highly appreciated food specialties, mainly in Portugal and other southern European countries. Therefore, all research efforts aiming at improving the food quality and safety of traditional dry sausages are of interest, since they are likely to result in products with higher added value and quality standards most suited to the requirements and concerns of the modern consumers. Among those efforts, it may be highlighted the studies involving innovative processing parameters and technologies to overcome practical problems gathered in the meat industry, which are mostly associated with food quality and safety. Additionally, characterization of traditional dry sausages and rationalization of their processing are essential for further achievement of any official certification. Thus, this article attempts to point out some research lines of highest interest in meat science (and particularly to the broad variety of regional dry fermented sausages), towards to the valorisation of technological, nutritional and commercial features. In addition, it is here emphasized the importance for the continuous improvement of the quality and safety of meat products as a way to respond to the current concerns regarding its consumption and the general advices in reducing its daily intake.

Natural variation in expression of genes associated with carotenoid biosynthesis and accumulation in cassava (Manihot esculenta Crantz) storage root.

ABSTRACT: BACKGROUND: Cassava (Manihot esculenta Crantz) storage root provides a staple food source for millions of people worldwide. Increasing the carotenoid content in storage root of cassava could provide improved nutritional and health benefits. Because carotenoid accumulation has been associated with storage root color, this study characterized carotenoid profiles, and abundance of key transcripts associated with carotenoid biosynthesis, from 23 landraces of cassava storage root ranging in color from white-to-yellow-to-pink. This study provides important information to plant breeding programs aimed at improving cassava storage root nutritional quality. RESULTS: Among the 23 landraces, five carotenoid types were detected in storage root with white color, while carotenoid types ranged from 1 to 21 in storage root with pink and yellow color. The majority of storage root in these landraces ranged in color from pale-to-intense yellow. In this color group, total ß-carotene, containing all-E-, 9-Z-, and 13-Z-ß-carotene isomers, was the major carotenoid type detected, varying from 26.13 to 76.72 %. Although no ?-carotene was observed, variable amounts of a ?-ring derived xanthophyll, lutein, was detected; with greater accumulation of ?-ring xanthophylls than of ß-ring xanthophyll. Lycopene was detected in a landrace (Cas51) with pink color storage root, but it was not detected in storage root with yellow color. Based on microarray and qRT-PCR analyses, abundance of transcripts coding for enzymes involved in carotenoid biosynthesis were consistent with carotenoid composition determined by contrasting HPLC-Diode Array profiles from storage root of landraces IAC12, Cas64, and Cas51. Abundance of transcripts encoding for proteins regulating plastid division were also consistent with the observed differences in total ß-carotene accumulation. CONCLUSIONS: Among the 23 cassava landraces with varying storage root color and diverse carotenoid types and profiles, landrace Cas51 (pink color storage root) had low LYCb transcript abundance, whereas landrace Cas64 (intense yellow storage root) had decreased HYb transcript abundance. These results may explain the increased amounts of lycopene and total ß-carotene observed in landraces Cas51 and Cas64, respectively. Overall, total carotenoid content in cassava storage root of color class representatives were associated with spatial patterns of secondary growth, color, and abundance of transcripts linked to plastid division. Finally, a partial carotenoid biosynthesis pathway is proposed.

Developing a supportive culture for teaching and learning : a university, faculty and school perspective

In the early 1990's the University of Salford was typical of most pre-1992 Universities in that whilst students provided much of it's income, little attention was paid to pedagogy. As Warren Piper (1994) observed, University teachers were professional in their subject areas but generally did not seek to acquire a pedagogy of HE. This was the case in Alsford. Courses were efficiently run but only a minority of staff were engaged in actively considering learning and teaching issues. Instead staff time was spent on research and commercial activity.----- In the mid-1990's the teaching environment began to change significantly. As well as Dearing, the advent of QAA and teaching quality reviews, Salford was already experiencing changes in the characteristics of its student body. Wideing access was on our agenda before it was so predominant nationally. With increasing numbers and heterogeneity of students as well as these external factors, new challenges were facing the University and teaching domain.----- This paper describes how a culture which values teaching, learning and pedagogic inquiry is being created in the university. It then focuses on parts of this process specific to the Faculty of Business and Informatics, namely the Faculty's Learning and Teaching Research Network and the establishment of the Centre for Construction Education in the School of Construction and Property Management.----- The Faculty of Business and Informatics' Learning and Teaching Research Network aims to raise the profile, quality and volume of pedagogic research across the five schools in the faculty. The initiative is targeted at all academics regardless of previous research experience. We hope to grow and nurture research potential where it exists and to acknowledge and use the existing expertise of subject-based researchers in collaborative ventures. We work on the principle that people are deliged to share what they know but need appreciation and feedback for doing so. A further ain is to surface and celebrate the significant amount of tacit knowledge in the area of pedagogy evidenced by the strength of student and employer feedback in many areas of the faculty's teaching.----- The Faculty embraces generic and core management expertise but also includes applied management disciplines in information systems and construction and property management where internationally leading research activities and networked centres of excellence have been established. Drawing from this experience, and within the context of the Faculty network, a Centre for Construction Education is being established with key international external partners to develop a sustainable business model of an enterprising pedagogic centre that can undertake useful research to underpin teaching in the Faculty whilst offering sustainable business services to allow it to benefit from pump-priming grant funding.----- Internal and external networking are important elements in our plans and ongoing work. Key to this are our links with the LTSN subject centres (BEST and CEBE) and the LTSN generic centre. The paper discusses networking as a concept and gives examples of practices which have proved useful in this context.----- The academic influences on our approach are also examined. Dixon’s (2000) work examining how a range of companies succeed through internal knowledge sharing has provided a range of transferable practices. We also examine the notion of dialogue in this context, defined by Ballantyne (1999) as ‘The interactive human process of reasoning together which comes into being through interactions based on spontaneity or need and is enabled by trust’ Social constructionist principles of Practical Authorship (Shotter, 1993, Pavlica, Holman and Thorpe, 1998)) have also proved useful in developing our perspective on learning and knowledge creation within our community of practice.

Electronic states of trans-polyacetylene, poly(p-phenylene vinylene) and sp-hybridised carbon species in amorphous hydrogenated carbon probed by resonant Raman scattering

Inclusions of sp-hybridised, trans-polyacetylene [trans-(CH)x] and poly(p-phenylene vinylene) (PPV) chains are revealed using resonant Raman scattering (RRS) investigation of amorphous hydrogenated carbon (a-C:H) films in the near IR – UV range. The RRS spectra of trans-(CH)x core Ag modes and the PPV CC-H phenylene mode are found to transform and disperse as the laser excitation energy ћωL is increased from near IR through visible to UV, whereas sp-bonded inclusions only become evident in UV. This is attributed to ћωL probing of trans-(CH)x chain inhomogeneity and the distribution of chains with varying conjugation length; for PPV to the resonant probing of phelynene ring disorder; and for sp segments, to ћωL probing of a local band gap of end-terminated polyynes. The IR spectra analysis confirmed the presence of sp, trans-(CH)x and PPV inclusions. The obtained RRS results for a-C:H denote differentiation between the core Ag trans-(CH)x modes and the PPV phenylene mode. Furthermore, it was found that at various laser excitation energies the changes in Raman spectra features for trans-(CH)x segments included in an amorphous carbon matrix are the same as in bulk trans-polyacetylene. The latter finding can be used to facilitate identification of trans-(CH)x in the spectra of complex carbonaceous materials.

Towards ubiquitous city : concept, planning, and experiences in the Republic of Korea

Information and communication technologies (ICTs) had occupied their position on knowledge management and are now evolving towards the era of self-intelligence (Klosterman, 2001). In the 21st century ICTs for urban development and planning are imperative to improve the quality of life and place. This includes the management of traffic, waste, electricity, sewerage and water quality, monitoring fire and crime, conserving renewable resources, and coordinating urban policies and programs for urban planners, civil engineers, and government officers and administrators. The handling of tasks in the field of urban management often requires complex, interdisciplinary knowledge as well as profound technical information. Most of the information has been compiled during the last few years in the form of manuals, reports, databases, and programs. However frequently, the existence of these information and services are either not known or they are not readily available to the people who need them. To provide urban administrators and the public with comprehensive information and services, various ICTs are being developed. In early 1990s Mark Weiser (1993) proposed Ubiquitous Computing project at the Xerox Palo Alto Research Centre in the US. He provides a vision of a built environment which digital networks link individual residents not only to other people but also to goods and services whenever and wherever they need (Mitchell, 1999). Since then the Republic of Korea (ROK) has been continuously developed national strategies for knowledge based urban development (KBUD) through the agenda of Cyber Korea, E-Korea and U-Korea. Among abovementioned agendas particularly the U-Korea agenda aims the convergence of ICTs and urban space for a prosperous urban and economic development. U-Korea strategies create a series of U-cities based on ubiquitous computing and ICTs by a means of providing ubiquitous city (U-city) infrastructure and services in urban space. The goals of U-city development is not only boosting the national economy but also creating value in knowledge based communities. It provides opportunity for both the central and local governments collaborate to U-city project, optimize information utilization, and minimize regional disparities. This chapter introduces the Korean-led U-city concept, planning, design schemes and management policies and discusses the implications of U-city concept in planning for KBUD.

E-Government and the digital divide

Many governments world wide are attempting to increase accountability, transparency, and the quality of services by adopting information and communications technologies (ICTs) to modernize and change the way their administrations work. Meanwhile e-government is becoming a significant decision-making and service tool at local, regional and national government levels. The vast majority of users of these government online services see significant benefits from being able to access services online. The rapid pace of technological development has created increasingly more powerful ICTs that are capable of radically transforming public institutions and private organizations alike. These technologies have proven to be extraordinarily useful instruments in enabling governments to enhance the quality, speed of delivery and reliability of services to citizens and to business (VanderMeer & VanWinden, 2003). However, just because the technology is available does not mean it is accessible to all. The term digital divide has been used since the 1990s to describe patterns of unequal access to ICTs—primarily computers and the Internet—based on income, ethnicity, geography, age, and other factors. Over time it has evolved to more broadly define disparities in technology usage, resulting from a lack of access, skills, or interest in using technology. This article provides an overview of recent literature on e-government and the digital divide, and includes a discussion on the potential of e-government in addressing the digital divide.

A study of vibration and vibration control of ship structures

This paper examines the vibration characteristics and vibration control of complex ship structures. It is shown that input mobilities of a ship structure at engine supports, due to out-of-plane force or bending moment excitations, are governed by the flexural stiffness of the engine supports. The frequency averaged input mobilities of the ship structure, due to such excitations, can be represented by those of the corresponding infinite beam. The torsional moment input mobility at the engine support can be estimated from the torsional response of the engine bed section under direct excitation. It is found that the inclusion of ship hull and deck plates in the ship structure model has little effect on the frequency-averaged response of the ship structure. This study also shows that vibration propagation in complex ship structures at low frequencies can be attenuated by imposing irregularities to the ring frame locations in ships. Vibration responses of ship structures due to machinery excitations at higher frequencies can be controlled by structural modifications of the local supporting structures such as engine beds in ships.

Authentic and conventional assessment in Singapore schools : an empirical study of teacher assignments and student work

This is an empirical examination of the quality of teacher assignments and student work in Singapore schools. Using a theoretical framework based on principles of authentic assessment and intellectual quality, two sets of criteria and scoring rubrics were developed for the training of expert teachers to judge the quality of assignments and student work. Following rigorous training, the inter-rater reliability of expert teacher scoring was high. Samples of teacher assignments and student work were collected in English, social studies, mathematics, and science subject areas from a random stratified sample of 30 elementary schools and 29 high schools. For both grade levels, there were significant differences for the authentic intellectual quality of teachers’ assignments by subject area. Likewise, the differences of authentic intellectual quality for student work were significant and varied by subject area. Subject area effect was large. The correlations between the quality of teachers’ assignment tasks and student work were strong and significant at both grade levels. Where teachers set more intellectually demanding tasks, students were more likely to generate work or artefacts judged to be of higher quality. The findings suggest that teacher professional development in authentic intellectual assessment task design can contribute to the improvement of student learning and performance. It is argued that this will be a key requisite of educational systems like Singapore that are seeking to expand pedagogy and student outcomes beyond a focus on factual and rote knowledge.

Maternal support for autonomy : relationships with persistence for children with Down syndrome and typically developing children

Maternal behaviors and child mastery behaviors were examined in 25 children with Down syndrome and 43 typically developing children matched for mental age (24–36 months). During a shared problem-solving task, there were no group differences in maternal directiveness or support for autonomy, and mothers in the two groups used similar verbal strategies when helping their child. There were also no group differences in child mastery behaviors, measured as persistence with two optimally challenging tasks. However, the two groups differed in the relationships of maternal style with child persistence. Children with Down syndrome whose mothers were more supportive of their autonomy in the shared task displayed greater persistence when working independently on a challenging puzzle, while children of highly directive mothers displayed lower levels of persistence. For typically developing children, persistence was unrelated to maternal style, suggesting that mother behaviors may have different causes or consequences in the two groups.

Development of a colorimetric assay for heparanase activity suitable for kinetic analysis and inhibitor screening

The role that heparanase plays during metastasis and angiogenesis in tumors makes it an attractive target for cancer therapeutics. Despite this enzyme’s significance, most of the assays developed to measure its activity are complex. Moreover, they usually rely on labeling variable preparations of the natural substrate heparan sulfate, making comparisons across studies precarious. To overcome these problems, we have developed a convenient assay based on the cleavage of the synthetic heparin oligosaccharide fondaparinux. The assay measures the appearance of the disaccharide product of heparanase-catalyzed fondaparinux cleavage colorimetrically using the tetrazolium salt WST-1. Because this assay has a homogeneous substrate with a single point of cleavage, the kinetics of the enzyme can be reliably characterized, giving a Km of 46 μM and a kcat of 3.5 s−1 with fondaparinux as substrate. The inhibition of heparanase by the published inhibitor, PI-88, was also studied, and a Ki of 7.9 nM was determined. The simplicity and robustness of this method, should, not only greatly assist routine assay of heparanase activity but also could be adapted for high-throughput screening of compound libraries, with the data generated being directly comparable across studies.

Formative and reflective measurement and validation mismatch in survey research : an archival analysis of information systems success constructs 1985-2007

The generic IS-success constructs first identified by DeLone and McLean (1992) continue to be widely employed in research. Yet, recent work by Petter et al (2007) has cast doubt on the validity of many mainstream constructs employed in IS research over the past 3 decades; critiquing the almost universal conceptualization and validation of these constructs as reflective when in many studies the measures appear to have been implicitly operationalized as formative. Cited examples of proper specification of the Delone and McLean constructs are few, particularly in light of their extensive employment in IS research. This paper introduces a four-stage formative construct development framework: Conceive > Operationalize > Respond > Validate (CORV). Employing the CORV framework in an archival analysis of research published in top outlets 1985-2007, the paper explores the extent of possible problems with past IS research due to potential misspecification of the four application-related success dimensions: Individual-Impact, Organizational-Impact, System-Quality and Information-Quality. Results suggest major concerns where there is a mismatch of the Respond and Validate stages. A general dearth of attention to the Operationalize and Respond stages in methodological writings is also observed.

Constructing quality : the Hong Kong Housing Department journey

This paper explores the ‘journey’ along the ‘never ending quality road’ undertaken by the Hong Kong Housing Department over the last 15 years. It briefly covers the early history of public housing in Hong Kong, the catalytic effect brought about by the discovery of the infamous 26 sub-standard blocks in the mid-80s leading to the subsequent major improvements to process control and structural quality in the period 1985-1990. It then moves onto a discussion of initiatives taken since 1991, including the formation of the List of Building Contractors and the implementation of the Performance Assessment Scoring System (PASS). The paper ends with a discussion of the current status of quality issues within the Department and touches on future initiatives being developed to further enhance the quality of public housing in Hong Kong.

Whither culture? Australian horror films and the limitations of cultural policy

Cultural policy that attempts to foster the Australian film industry’s growth and development in an era of globalisation is coming under increasing pressure. Throughout the 2000s, there has been a substantial boom in Australian horror films led by ‘runaway’ horror film Saw (2004), Wolf Creek (2005), and Undead (2003), achieving varying levels of popularity and commercial success worldwide. However, emerging within a national cinema driven by public subsidy and valuing ‘quality’ and ‘cultural content’ over ‘entertainment’ and ‘commercialism’, horror films have generally been antithetical to these objectives. Consequently, the recent boom in horror films has occurred largely outside the purview and subvention of cultural policy. This paper argues that global forces and emerging production and distribution models are challenging the ‘narrowness’ of cultural policy – a narrowness that mandates a particular film culture, circumscribes certain notions of value and limits the variety of films produced domestically. Despite their low-culture status, horror films have been well suited to the Australian film industry’s financial limitations, they are a growth strategy for producers, and a training ground for emerging filmmakers.