Using health-related quality of life instruments for children with long-term conditions : On the basis of a national quality registry system

Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments. Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system. Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings. Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations. Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.

The susceptibility of digital signatures to fraud in the National Electronic Conveyancing System : an analysis

Public key cryptography, and with it,the ability to compute digital signatures, have made it possible for electronic commerce to flourish. It is thus unsurprising that the proposed Australian NECS will also utilise digital signatures in its system so as to provide a fully automated process from the creation of electronic land title instrument to the digital signing, and electronic lodgment of these instruments. This necessitates an analysis of the fraud risks raised by the usage of digital signatures because a compromise of the integrity of digital signatures will lead to a compromise of the Torrens system itself. This article will show that digital signatures may in fact offer greater security against fraud than handwritten signatures; but to achieve this, digital signatures require an infrastructure whereby each component is properly implemented and managed.

Social studies disciplinary knowledge: Tensions between state curriculum and national assessment requirements

In this chapter, we are particularly concerned with making visible the general principles underlying the transmission of Social Studies curriculum knowledge, and considering it in light of a high-stakes mandated national assessment task. Specifically, we draw on Bernstein’s theoretical concept of pedagogic models as a tool for analysing orientations to teaching and learning. We introduce a case in point from the Australian context: one state Social Studies curriculum vis-a-vis one part of the Year Three national assessment measure for reading. We use our findings to consider the implications for the disciplinary knowledge of Social Studies in the communities in which we are undertaking our respective Australian Research Council Linkage project work (Glasswell et al.; Woods et al.). We propose that Social Studies disciplinary knowledge is being constituted, in part, through power struggles between different agencies responsible for the production and relay of official forms of state curriculum and national literacy assessment. This is particularly the case when assessment instruments are used to compare and contrast school results in highly visible web based league tables (see, for example, http://myschoolaustralia.ning.com/).

National health and hospital network for Australia's future : Implications for emergency medicine

The proposals arising from the agreement reached between the Rudd government and the States and Territories (except Western Australia) in April 2010 represent the most fundamental realignment of health responsibilities since the creation of Medicare in 1984. They will change the health system, and the structures that will craft its future direction and design. These proposals will have a significant impact on Emergency Medicine; an impact from not only the system-wide effects of the proposals but also those that derive from the specific recommendations to create an activity-based funding mechanism for EDs, to implement the four hour rule and to develop a performance indicator framework for EDs. The present paper will examine the potential impact of the proposals on Emergency Medicine to inform those who work within the system and to help guide further developments. More work is required to better evaluate the proposals and to guide the design and development of specific reform instruments. Any such efforts should be based upon a proper analysis of the available evidence, and a structured approach to research and development so as to deliver on improved services to the community, and on improved quality and safety of emergency medical care.

Access to meaningful relationships through virtual instruments and ensembles

This workshop focuses upon research about the qualities of community in music and of music in community facilitated by technologically supported relationships. Generative media systems present an opportunity for users to leverage computational systems to form new relationships through interactive and collaborative experiences. Generative music and art are a relatively new phenomenon that use procedural invention as a creative technique to produce music and visual media. Early systems have demonstrated the potential to provide access to collaborative ensemble experiences for users with little formal musical or artistic expertise. This workshop examines the relational affordances of these systems evidenced by selected field data drawn from the Network Jamming Project. These generative performance systems enable access to unique ensembles with very little musical knowledge or skill and offer the possibility of interactive relationships with artists and musical knowledge through collaborative performance. In this workshop we will focus on data that highlights how these simulated experiences might lead to understandings that may be of social benefit. Conference participants will be invited to jam in real time using virtual interfaces and to evaluate purposively selected video artifacts that demonstrate different kinds of interactive relationship with artists, peers, and community and that enrich the sense of expressive self. Theoretical insights about meaningful engagement drawn from the longitudinal and cross cultural experiences will underpin the discussion and practical presentation.

Global Lessons from Fitzgerald : From State and National to Global Integrity Systems

Tony Fitzgerald’s visionary leap was to see beyond localised, individual wrongdoing. He suggested remedies that were systemic, institutionalised, and directed at underlying structural problems that led to corruption. His report said ‘the problems with which this Inquiry is concerned are not merely associated with individuals, but are institutionalized and related to attitudes which have become entrenched’ (Fitzgerald Report 1989, 13). His response was to suggest an enmeshed system of measures to not only respond reactively to future corruption, but also to prevent its recurrence through improved integrity systems. In the two decades since that report the primary focus of corruption studies and anti-corruption activism has remained on corruption at the local level or within sovereign states. International activism was largely directed at co-ordinating national campaigns and to use international instruments to make these campaigns more effective domestically. This reflects the broader fact that, since the rise of the nation state, states have comprised the majority of the largest institutional actors and have been the most significant institution in the lives of most individuals. This made states the ‘main game in town’ for the ‘governance disciplines’ of ethics, law, political science and economics.

The momentum effect in competitions : field evidence from tennis matches

It is often suggested that there is a psychological advantage to be leading in a competition. It is, however, hard to identify such an effect econometrically. Using a Regression Discontinuity Design over a large dataset of tennis matches (N=634,095) the present paper exploits the randomised variation in first set results that occurs when the first set is decided by a close tie break (N=72,294). I find that winning the first set has a significant and strong effect on the result of the second set. A player who wins a close first set tie break will, on average, win one game more in the second set. I discuss the likely economic and psychological explanations of this phenomenon.

Bail and remand for young people in Australia : a national research project

Funded and endorsed by the Australasian Juvenile Justice Administrators, this is one of the first national scale research reports into the bail and remand practices for young Australians. A young person can be placed in custody on remand (ie refused bail) after being arrested by police in relation to a suspected criminal offence, before entering a plea, while awaiting trial, during trial or awaiting sentence. Although custodial remand plays an important role in Western criminal justice systems, minimising the unnecessary use of remand is important given the obligations Australia has under several UN instruments to use, as a last resort, youth detention of any kind. This research identifies trends in the use of custodial remand and explores the factors that influence its use for young people nationally and in each of Australia’s jurisdictions.

Prosecution of maritime pirates : the national court is dead—long live the national court

Piracy is one of the main maritime security concerns in the contemporary world. The number of piracy incidents is increasing rapidly, which is highly problematic for maritime security. Although international law provides universal jurisdiction for the prosecution of maritime pirates, the actual number of prosecutions is alarmingly low compared to the number of incidents of piracy. Despite many states becoming parties to the relevant international conventions, they are reluctant to establish the necessary legal and institutional frameworks at the national level for the prosecution of pirates. The growing incidences of piracy and the consequential problems associated with prosecuting pirates have created doubts about the adequacy of the current international legal system, which is fully dependent on national courts for the prosecution of pirates. This article examines the possible ways for ensuring the effective prosecution of pirates. Contrary to the different proposals forwarded by researchers in the wake of Somali piracy for the establishment of international judicial institutions for the prosecution of pirates, this article argues that the operationalization of national courts through the proper implementation of relevant international legal instruments within domestic legal systems is the most viable solution. However, this article submits that the operationalization of national courts will not be very successful following the altruistic model of universal adjudicative jurisdiction. A state may enact legislation implementing universal jurisdiction but will not be very interested in prosecuting a pirate in its national court if it has no relation with the piratical incident. Rather, it will be successful if the global community seriously implement the Convention for the Suppression of Unlawful Acts against the Safety of Maritime Navigation (SUA Convention), which obligates the states that have some connection with a piratical incident to prosecute pirates in their national courts.

Review of Diagnostic Screening Instruments for Alcohol and Other Drug Use and Other Psychiatric Disorders

In recent years there has been a growing recognition that many people with drug or alcohol problems are also experiencing a range of other psychiatric and psychological problems. The presence of concurrent psychiatric or psychological problems is likely to impact on the success of treatment services. These problems vary greatly, from undetected major psychiatric illnesses that meet internationally accepted diagnostic criteria such as those outlined in the Diagnostic and Statistical Manual (DSM-IV) of the American Psychiatric Association (1994), to less defined feelings of low mood and anxiety that do not meet diagnostic criteria but nevertheless impact on an individual’s sense of wellbeing and affect their quality of life. Similarly, the presence of a substance misuse problem among those suffering from a major psychiatric illness, often goes undetected. For example, the use of illicit drugs such as cannabis and amphetamine is higher among those individuals suffering from schizophrenia (Hall, 1992) and the misuse of alcohol in people suffering from schizophrenia is well documented (e.g., Gorelick et al., 1990; Searles et al., 1990; Soyka et al., 1993). High rates of alcohol misuse have also been reported in a number of groups including women presenting for treatment with a primary eating disorder (Holderness, Brooks Gunn, & Warren, 1994), individuals suffering from post-traumatic stress disorder (Seidel, Gusman and Aubueg, 1994), and those suffering from anxiety and depression. Despite considerable evidence of high levels of co-morbidity, drug and alcohol treatment agencies and mainstream psychiatric services often fail to identify and respond to concurrent psychiatric or drug and alcohol problems, respectively. The original review was conducted as a first step in providing clinicians with information on screening and diagnostic instruments that may be used to assess previously unidentified co-morbidity. The current revision was conducted to extend the original review by updating psychometric findings on measures in the original review, and incorporating other frequently used measures that were not previously included. The current revision has included information regarding special populations, specifically Indigenous Australians, older persons and adolescents. The objectives were to: ● update the original review of AOD and psychiatric screening/diagnostic instruments, ● recommend when these instruments should be used, by whom and how they should be interpreted, ● identify limitations and provide recommendations for further research, ● refer the reader to pertinent Internet sites for further information and/or purchasing of assessment instruments.

Integrated Sensor Systems for Vessels of Opportunity, National Oceanographic Centre, Southampton, UK, October 10-12,2006 : workshop proceedings

The use of self-contained, low-maintenance sensor systems installed on commercial vessels is becoming an important monitoring and scientific tool in many regions around the world. These systems integrate data from meteorological and water quality sensors with GPS data into a data stream that is automatically transferred from ship to shore. To begin linking some of this developing expertise, the Alliance for Coastal Technologies (ACT) and the European Coastal and Ocean Observing Technology (ECOOT) organized a workshop on this topic in Southampton, United Kingdom, October 10-12, 2006. The participants included technology users, technology developers, and shipping representatives. They collaborated to identify sensors currently employed on integrated systems, users of this data, limitations associated with these systems, and ways to overcome these limitations. The group also identified additional technologies that could be employed on future systems and examined whether standard architectures and data protocols for integrated systems should be established. Participants at the workshop defined 17 different parameters currently being measured by integrated systems. They identified that diverse user groups utilize information from these systems from resource management agencies, such as the Environmental Protection Agency (EPA), to local tourism groups and educational organizations. Among the limitations identified were instrument compatibility and interoperability, data quality control and quality assurance, and sensor calibration andlor maintenance frequency. Standardization of these integrated systems was viewed to be both advantageous and disadvantageous; while participants believed that standardization could be beneficial on many levels, they also felt that users may be hesitant to purchase a suite of instruments from a single manufacturer; and that a "plug and play" system including sensors from multiple manufactures may be difficult to achieve. A priority recommendation and conclusion for the general integrated sensor system community was to provide vessel operators with real-time access to relevant data (e.g., ambient temperature and salinity to increase efficiency of water treatment systems and meteorological data for increased vessel safety and operating efficiency) for broader system value. Simplified data displays are also required for education and public outreach/awareness. Other key recommendations were to encourage the use of integrated sensor packages within observing systems such as 100s and EuroGOOS, identify additional customers of sensor system data, and publish results of previous work in peer-reviewed journals to increase agency and scientific awareness and confidence in the technology. Priority recommendations and conclusions for ACT entailed highlighting the value of integrated sensor systems for vessels of opportunity through articles in the popular press, and marine science. [PDF contains 28 pages]

Fisheries statutory instruments 1950-93 [collection of salmon and fisheries legislation with special respect to Cumbria]

This document is a collection of legislative documents relating to fisheries, especially Statutory Instruments, with special regards to the county Cumbria in the north of England. This includes Orders on salmon and trout spanning the years 1950-1993.

Major and trace element analytical methods of the National Status and Trends Program: 2000-2006

This document contains analytical methods that detail the procedures for determining major and trace element concentrations in bivalve tissue and sediment samples collected as part of the National Status and Trends Program (NS&T) for the years 2000-2006. Previously published NOAA Technical Memoranda NOS ORCA 71 and 130 (Lauenstein and Cantillo, 1993; Lauenstein and Cantillo, 1998) detail trace element analyses for the years 1984-1992 and 1993-1996, respectively, and include ancillary, histopathology, and contaminant (organic and trace element) analytical methods. The methods presented in this document for trace element analysis were utilized by the NS&T Mussel Watch and Bioeffects Projects. The Mussel Watch Project has been monitoring contaminants in bivalves and sediment for over 20 years, and is the longest active contaminant monitoring program operating in U.S. costal waters. Approximately 280 Mussel Watch sites are monitored on biennial and decadal timescales using bivalve tissue and sediment, respectively. The Bioeffects Project applies the sediment quality approach, which uses sediment contamination measurements, toxicity tests and benthic macroinfauna quantification to characterize pollution in selected estuaries and coastal embayments. Contaminant assessment is a core function of both projects. Although only one contract laboratory was used by the NS&T Program during the specified time period, several analytical methods and instruments were employed. The specific analytical method, including instrumentation and detection limit, is noted for each measurement taken and can be found at http://NSandT.noaa.gov. The major and trace elements measured by the NS&T Program include: Al, Si, Cr, Mn, Fe, Ni, Cu, Zn, As, Se, Sn, Sb, Ag, Cd, Hg, Tl and Pb.

Energy-Momentum of a Cosmological Brane Model and the Gauge Hierarchy

We analyze in this paper the general covariant energy-momentum tensor of the gravitational system in general five-dimensional cosmological brane-world models. Then through calculating this energy-momentum for the cosmological generalization of the Randall-Sundrum model, which includes the original RS model as the static limit, we are able to show that the weakness of the gravitation on the "visible" brane is a general feature of this model. This is the origin of the gauge hierarchy from a gravitational point of view. Our results are also consistent with the fact that a gravitational system has vanishing total energy.

Angular momentum of a brane-world model

In this paper we discuss the properties of the general covariant angular momentum of a five-dimensional brane-world model. Through calculating the total angular momentum of this model, we are able to analyze the properties of the total angular momentum in the inflationary RS model. We show that the space-like components of the total angular momentum of the inflationary RS model are all zero while the others are non-zero, which agrees with the results from ordinary RS model.