A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

Use ‘4Rs’ criteria to assess papers

We propose a '4R' approach to assessing reported research, underpinned by statistical rigour (see J. T. Leek and R. D. Peng Nature 520, 612; 2015). These 4Rs denote reproduction, replication, robustness and revelation...

A values analysis of attitudes towards the use of law to prevent obesity: How might these values inform public health law theory and practice?

This thesis asks whether values, like government duty, individual responsibility, community and social justice, influence the way that scholars and research participants think about the use of law to prevent obesity. It explores the way participants speak about values when expressing their support for or against a variety of government regulatory interventions, including taxation, food labelling reforms and advertising restrictions. This research contributes to our understanding of theories of public health law and public health ethics. The qualitative findings also have implications for policy development, in advocating for a variety of government interventions to prevent obesity.

Water use and wastewater discharge of industrial sector in China

Problem of water scarcity has been increasingly severe in China. Though industrial sectors play important role for the rapid economic growth, and they consumes water and discharge wastewater. The purpose of this study is to examine the efficiency of water use and wastewater discharge in comparison with those of other inputs and production output in Chinese industry. Measuring efficiency of each input and output factor from 2002 to 2008, we find the average inefficiencies of industrial water use and industrial wastewater discharge are higher than those of capital, labor, and production output in China. In addition, the productivity levels to save water in the water shortage areas are not higher compared to the others. The water use inefficiency has a high dispersion especially in the regions where the amounts of water resources per capita is less than 3000 cubic meter.

Hepatitis C and initiates into injecting drug use among young people: Part I: The first shot

Explores how young people in Australia first come to inject drugs and how they learn about hepatitis C and sterile injecting drug use. Background on hepatitis C; Reasons for injecting drugs; Selection criteria for young people's participation in the i2i Project.

Use of online health information to manage children’s health care: A prospective study investigating parental decisions

Background The use of the internet to access information is rapidly increasing; however, the quality of health information provided on various online sites is questionable. We aimed to examine the underlying factors that guide parents' decisions to use online information to manage their child's health care, a behaviour which has not yet been explored systematically. Methods Parents (N=391) completed a questionnaire assessing the standard theory of planned behaviour (TPB) measures of attitude, subjective norm, perceived behavioural control (PBC), and intention as well as the underlying TPB belief-based items (i.e., behavioural, normative, and control beliefs) in addition to a measure of perceived risk and demographic variables. Two months later, consenting parents completed a follow-up telephone questionnaire which assessed the decisions they had made regarding their use of online information to manage their child's health care during the previous 2 months. Results We found support for the TPB constructs of attitude, subjective norm, and PBC as well as the additional construct of perceived risk in predicting parents' intentions to use online information to manage their child's health care, with further support found for intentions, but not PBC, in predicting parents' behaviour. The results of the TPB belief-based analyses also revealed important information about the critical beliefs that guide parents' decisions to engage in this child health management behaviour. Conclusions This theory-based investigation to understand parents' motivations and online information-seeking behaviour is key to developing recommendations and policies to guide more appropriate help-seeking actions among parents.

Is comfort important for optimal use of child restraints?

Suboptimal restraint use, particularly the incorrect use of restraints, is a significant and widespread problem among child vehicle occupants, and increases the risk of injury. Previous research has identified comfort as a potential factor influencing suboptimal restraint use. Both the real comfort experienced by the child and the parent’s perception of the child’s comfort are reported to influence the optimal use of restraints. Problems with real comfort may lead the child to misuse the restraint in their attempt to achieve better comfort whilst parent-perceived discomfort has been reported as a driver for premature graduation and inappropriate restraint choice. However, this work has largely been qualitative. There has been no research that objectively studies either the association between real and parental perceived comfort, or any association between comfort and suboptimal restraint use. One barrier to such studies is the absence of validated tools for quantifying real comfort in children. We aimed to develop methods to examine both real and parent-perceived comfort and examine their effects on suboptimal restraint use. We conducted online parent surveys (n=470) to explore what drives parental perceptions of their child’s comfort in restraint systems (study 1) and used data from field observation studies (n=497) to examine parent-perceived comfort and its relationship with observed restraint use (study 2). We developed methods to measure comfort in children in a laboratory setting (n=14) using video analysis to estimate a Discomfort Avoidance Behaviour (DAB) score, pressure mapping and adapted survey tools to differentiate between comfortable and induced discomfort conditions (study 3). Preliminary analysis of our recent online survey of Australian parents (study 1) indicates that 23% of parents report comfort as a consideration when making a decision to change restraints. Logistic regression modelling of data collected during the field observation study (study 2) revealed that parent-perceived discomfort was not significantly associated with premature graduation. Contrary to expectation, children of parents who reported that their child was comfortable were almost twice as likely to have been incorrectly restrained (p<0.01, 95% CI 1.24 - 2.77). In the laboratory study (study 3) we found our adapted survey tools did not provide a reliable measurement of real comfort among children. However our DAB score was able to differentiate between comfortable and induced discomfort conditions and correlated well with pressure mapping. Our results suggest that while some parents report concern about their child’s comfort, parent-reported comfort levels were not associated with restraint choice. If comfort is important for optimal restraint use, it is likely to be the real comfort of the child rather than that reported by the parent. The method we have developed for studying real comfort can be used in naturalistic studies involving child occupants to further understand this relationship. This work will be of interest to vehicle and child restraint manufacturers interested in improving restraint design for young occupants as well as researchers and other stakeholders interested in reducing the incidence of restraint misuse among children.

Dr. Matthew Rimmer takes a closer look at Fair Use

For this week's Favorites of the Week, Dr. Matthew Rimmer wanted to focus in on some of the specific points that came up in the Congressional hearing on fair use earlier this week. While a bit different than our usual "favorites of the week" post, it's a really fantastic in-depth look at some of the issues, which I'm sure many of you will enjoy.

Natural hazards and land use planning: How resilient must a landowner be?

The past decade has seen an increase in the occurrence of natural hazards and the experience in Australia has led to a reconsideration of the planning for natural hazards by government and to the adoption of a whole-of-nation resilience-based approach to disaster management. A key component of creating community resilience is the integration of disaster management with government and community strategic planning in relation to the social, built, economic and natural environments. Joint responsibility of government and the community for ‘land use planning systems and building control arrangements [which] reduce, as far as is practicable, community exposure to unreasonable risks from known hazards’, is a critical element of a resilient community. As the responsibility for the implementation of land use planning policies in Australia is generally with local governments, this paper will examine whether, in light of improved predictive technology, the failure of a local government to adequately foresee and make provision for a known hazard will give rise to liability for damage or loss of property caused by that hazard.

Public use and perceptions of emergency departments: A population survey

Objectives To inform demand management strategies aimed at reducing congestion in EDs by: (i) identifying public use of EDs, decision-making and reasons; and (ii) measuring acceptance of alternative care models. Methods A cross-sectional telephone survey of a random sample of Queensland population aged 18 years or older residing in a dwelling unit in Queensland that could be contacted on a land-based telephone service was conducted. One person per household was selected according to a predetermined algorithm to ensure sex and regional balance were interviewed. The main outcome measures were: ED use, attitudes towards ED staff and services, and alternative models of care. Results The final sample included a total of 1256 respondents (response rate = 40.3%). Twenty-one per cent attended EDs in the preceding 12 months. The decision to attend was made by patients (51%), health and medical professionals (31%), and others (18%). The main reasons included perceived severity of the illness (47%), unavailability of alternative services (26%) and better care (11%). Most respondents agreed with more flexible care models of service delivery including incentives for general practitioners (90%), private health insurance coverage for ED use (89%), and enhanced roles for paramedics and nurses. Conclusions Main reason for attending ED is perceived severity of illness, followed by lack of alternative care. The majority of both consumers and the public are in favour of more flexible care models. However, further research is necessary to detail those alternatives and to test and validate their effectiveness.

A fair use project for Australia: Copyright law and creative freedom

This essay provides a critical assessment of the Fair Use Project based at the Stanford Center for Internet and Society. In evaluating the efficacy of the Fair Use Project, it is worthwhile considering the litigation that the group has been involved in, and evaluating its performance. Part 1 outlines the history of the Stanford Center for Internet and Society, and the aims and objectives of the Fair Use Project. Part 2 considers the litigation in Shloss v. Sweeney over a biography concerning Lucia Joyce, the daughter of the avant-garde literary great, James Joyce. Part 3 examines the dispute over the Harry Potter Lexicon. Part 4 looks at the controversy over the Shepard Fairey poster of President Barack Obama, and the resulting debate with Associated Press. Part 5 of the essay considers the intervention of the Fair Use Project as an amicus curiae in the ‘Column case’. Part 6 explores the participation of the Fair Use Project as an amicus curiae in the litigation over 60 Years Later, an unauthorised literary sequel to J.D. Salinger’s The Catcher in the Rye. Part 7 of the essay investigates the role of the Fair Use project in disputes over copyright law and musical works. Part 8 investigates the role of the Fair Use Project as an advocate in disputes over copyright law, fair use, documentary films, and internet videos. The conclusion has main three arguments. First, it contends that Australia should establish a Fair Use Project to support creative artists in litigation over copyright exceptions. Second, it maintains that Australia should adopt a flexible, open-ended defence of fair use, and draw upon the rich jurisprudence in the United States on the fair use doctrine. Finally, this paper argues that support should be given at an international level to the proposal for a Treaty on Access to Knowledge.

The freedom to tinker: Patent law and experimental use

This article considers the origins and the development of the defence of experimental use in patent law - the ’freedom to tinker'. It explores the impact of such an exemption upon a number of important industries - such as agriculture, biotechnology, and pharmaceutical drugs. This article takes a comparative approach in its analysis of patent law and experimental use. It highlights the competing norms, and lack of harmonization between a number of jurisdictions - including the United States, the European Union, and Australia. Section 2 provides a critique of the development of the common law defence of experimental use in the United States. It considers a series of precedents - including Roche Products Inc v Bolar Pharmaceuticals, Madey v Duke University, Integra Lifesciences I Ltd v Merck KgaA, and Applera v MJ Research. Section 3 explores the operation of patent law and experimental use in European jurisdictions. It looks at a number of significant precedents in the United Kingdom, the Netherlands, France, Italy, and Germany. Section 4 considers the policy debate in a number of forums over the defence of experimental use in Australia. It examines the controversy over Genetic Technologies Limited asking research organisations to obtain a licence in respect of its patents associated with non-coding DNA and genomic mapping. It also considers the inquiries of the Australian Law Reform Commission and the Advisory Council on Intellectual Property, as well as the impact of the TRIPS Agreement and the Australia-United States Free Trade Agreement. The conclusion contends that there is a need for a broad-based defence of experimental use for all the member states of the Organisation for Economic Co-operation and Development.

Technological adoption and use after mass market displacement: The case of the LP record

This paper investigates the reasons why some technologies, defying general expectations and the established models of technological change, may not disappear from the market after having been displaced from their once-dominant status. Our point of departure is that the established models of technological change are not suitable to explain this as they predominantly focus on technological dominance, giving attention to the technologies that display highest performance levels and gain greatest market share. And yet, technological landscapes are rife with technological designs that do not fulfil these conditions. Using the LP record as an empirical case, we propose that the central mechanism at play in the continuing market presence of once-dominant technologies is the recasting of their technological features from the functional-utilitarian to the aesthetic realm, with an additional element concerning communal interaction among users. The findings that emerge from our quantitative textual analysis of over 200,000 posts on a prominent online LP-related discussion forum (between 2002 and 2010) also suggest that the post-dominance technology adopters and users appear to share many key characteristics with the earliest adopters of new technologies, rather than with late-stage adopters which precede them.