Palliative care phase : inter-rater reliability and acceptability in a national study

Background: The concept of palliative care consisting of five distinct, clinically meaningful, phases (stable, unstable, deteriorating, terminal and bereavement) was developed in Australia about 20 years ago and is used routinely for communicating clinical status, care planning, quality improvement and funding. Aim: To test the reliability and acceptability of revised definitions of Palliative Care Phase. Design: Multi-centre cross-sectional study involving pairs of clinicians independently rating patients according to revised definitions of Palliative Care Phase. Setting/participants: Clinicians from 10 Australian palliative care services, including 9 inpatient units and 1 mixed inpatient/community-based service. Results: A total of 102 nursing and medical clinicians participated, undertaking 595 paired assessments of 410 patients, of which 90.7% occurred within 2 h. Clinicians rated 54.8% of patients in the stable phase, 15.8% in the unstable phase, 20.8% in the deteriorating phase and 8.7% in the terminal phase. Overall agreement between clinicians’ rating of Palliative Care Phase was substantial (kappa = 0.67; 95% confidence interval = 0.61–0.70). A moderate level of inter-rater reliability was apparent across all participating sites. The results indicated that Palliative Care Phase was an acceptable measure, with no significant difficulties assigning patients to a Palliative Care Phase and a good fit between assessment of phase and the definition of that phase. The most difficult phase to distinguish from other phases was the deteriorating phase. Conclusion: Policy makers, funders and clinicians can be confident that Palliative Care Phase is a reliable and acceptable measure that can be used for care planning, quality improvement and funding purposes.

Incorporating human-factors in car-following models : a review of recent developments and research needs

Over the past decades there has been a considerable development in the modeling of car-following (CF) behavior as a result of research undertaken by both traffic engineers and traffic psychologists. While traffic engineers seek to understand the behavior of a traffic stream, traffic psychologists seek to describe the human abilities and errors involved in the driving process. This paper provides a comprehensive review of these two research streams. It is necessary to consider human-factors in {CF} modeling for a more realistic representation of {CF} behavior in complex driving situations (for example, in traffic breakdowns, crash-prone situations, and adverse weather conditions) to improve traffic safety and to better understand widely-reported puzzling traffic flow phenomena, such as capacity drop, stop-and-go oscillations, and traffic hysteresis. While there are some excellent reviews of {CF} models available in the literature, none of these specifically focuses on the human factors in these models. This paper addresses this gap by reviewing the available literature with a specific focus on the latest advances in car-following models from both the engineering and human behavior points of view. In so doing, it analyses the benefits and limitations of various models and highlights future research needs in the area.

Addressing factory needs in cane variety selection

Cane fibre content has increased over the past ten years. Some of that increase can be attributed to new varieties selected for release. This paper reviews the existing methods for quantifying the fibre characteristics of a variety, including fibre content and fibre quality measurements – shear strength, impact resistance and short fibre content. The variety selection process is presented and it is reported that fibre content has zero weighting in the current selection index. An updated variety selection approach is proposed, potentially replacing the existing selection process relating to fibre. This alternative approach involves the use of a more complex mill area level model that accounts for harvesting, transport and processing equipment, taking into account capacity, efficiency and operational impacts, along with the end use for the bagasse. The approach will ultimately determine a net economic value for the variety. The methodology lends itself to a determination of the fibre properties that have a significant impact on the economic value so that variety tests can better target the critical properties. A low-pressure compression test is proposed as a good test to provide an assessment of the impact of a variety on milling capacity. NIR methodology is proposed as a technology to lead to a more rapid assessment of fibre properties, and hence the opportunity to more comprehensively test for fibre impacts at an earlier stage of variety development.

A little learning is a dangerous thing: Factors influencing the increased identification of special educational needs from the perspective of education policymakers and school practitioners

This article considers the increased identification of special educational needs in Australia’s largest education system from the perspectives of senior public servants, regional directors, principals, school counsellors, classroom teachers, support class teachers, learning support teachers and teaching assistants (n = 30). While their perceptions of an increase generally align with the story told by official statistics, participants’ narratives reveal that school-based identification of special educational needs is neither art nor science. This research finds that rather than an objective indication of the number and nature of children with SEN, official statistics may be more appropriately viewed as a product of funding eligibility and the assumptions of the adults who teach, refer and assess children who experience difficulties in school and with learning.

Blended learning : meeting the needs of distance education students

This thesis involved research into the barriers and enablers that existed for a cohort of mature-aged education support students engaging with blended learning through distance education. The findings that emerged from this research indicated that a flexible model of blended learning is possible in this context. The findings shed light on the experiences of novice technology users' participation in blended learning. The study highlighted the significance of factors such as isolation, technology, communication, connectivity, prior learning, and the growth of self-efficacy that influenced learner engagement.

Prevalence, predictors, and correlates of supportive care needs among women 3–5 years after a diagnosis of endometrial cancer

Purpose The purpose of this study is to examine the prevalence, sociodemographic and clinical predictors, and physical and psychosocial correlates of unmet needs among women 3–5 years following treatment for endometrial cancer. Methods Women with endometrial cancer completed a survey around the time of diagnosis and again 3–5 years later. The follow-up survey asked women about their physical and psychosocial functioning and supportive care needs (CaSUN). Multivariable-adjusted logistic regression identified the predictors and correlates of women’s unmet needs 3–5 years after diagnosis. Results Of the 629 women who completed the cancer survivors’ unmet needs measure (CaSUN), 24 % (n = 153) women reported one or more unmet supportive care needs in the last month. Unmet needs at 3–5 years post-diagnosis were predicted by younger age (OR = 4.47; 95 % CI: 2.09–9.56) and advanced disease stage at diagnosis (OR = 2.47; 95 % CI: 1.38–4.45) and correlated with greater cancer symptoms (OR = 1.78; 95 % CI: 1.05–3.02), lower limb swelling (OR = 2.50; 95 % CI: 1.51–4.15), symptoms of anxiety (OR = 2.21; 95 % CI: 1.31–3.72), and less availability of social support (OR = 3.42; 95 % CI: 1.92–6.11). Women with a history of comorbidities (OR = 0.47; 95 % CI: 0.27–0.82) and those living in a rural area at the time of diagnosis (OR = 0.56; 95 % CI: 0.34–0.92) were less likely to report unmet needs. Conclusions Sociodemographic, health, and psychosocial factors seem important for identifying women who will or will not have unmet needs several years following endometrial cancer. Longitudinal assessments of people’s needs over the course of their cancer trajectory may be an effective way to identify areas that should receive further attention by health providers.

Assembly and disassembly of temporary public spaces : establishing the theoretical needs

Contemporary cities no longer offer the same types of permanent environments that we planned for in the latter part of the twentieth century. Our public spaces are increasingly temporary, transient, and ephemeral. The theories, principles and tactics with which we designed these spaces in the past are no longer appropriate. We need a new theory for understanding the creation, use, and reuse of temporary public space. Moe than a theory, we need new architectural tactics or strategies that can be reliably employed to create successful temporary public spaces. This paper will present ongoing research that starts that process through critical review and technical analysis of existing and historic temporary public spaces. Through the analysis of a number of public spaces, that were either designed for temporary use or became temporary through changing social conditions, this research identifies the tactics and heuristics used in such projects. These tactics and heuristics are then analysed to extract some broader principles for the design of temporary public space. The theories of time related building layers, a model of environmental sustainability, and the recycling of social meaning, are all explored. The paper will go on to identify a number of key questions that need to be explored and addressed by a theory for such developments: How can we retain social meaning in the fabric of the city and its public spaces while we disassemble it and recycle it into new purposes? What role will preservation have in the rapidly changing future; will exemplary temporary spaces be preserved and thereby become no longer temporary? Does the environmental advantage of recycling materials, components and spaces outweigh the removal or social loss of temporary public space? This research starts to identify the knowledge gaps and proposes a number of strategies for making public space in the age of temporary, recyclable, and repurposing of our urban infrastructure; a way of creating lighter, cheaper, quicker, and temporary interventions.

Incidence, risk factors and estimates of a woman's risk of developing secondary lower limb lymphedema and lymphedema-specific supportive care needs in women treated for endometrial cancer

Objectives: Few studies have assessed the risk and impact of lymphedema among women treated for endometrial cancer. We aimed to quantify cumulative incidence of, and risk factors for developing lymphedema following treatment for endometrial cancer and estimate absolute risk for individuals. Further, we report unmet needs for help with lymphedema-specific issues. Methods: Women treated for endometrial cancer (n = 1243) were followed-up 3–5 years after diagnosis; a subset of 643 completed a follow-up survey that asked about lymphedema and lymphedema-related support needs. We identified a diagnosis of secondary lymphedema from medical records or self-report. Multivariable logistic regression was used to evaluate risk factors and estimates. Results: Overall, 13% of women developed lymphedema. Risk varied markedly with the number of lymph nodes removed and, to a lesser extent, receipt of adjuvant radiation or chemotherapy treatment, and use of nonsteroidal anti-inflammatory drugs (pre-diagnosis). The absolute risk of developing lymphedema was > 50% for women with 15 + nodes removed and 2–3 additional risk factors, 30–41% for those with 15 + nodes removed plus 0–1 risk factors or 6–14 nodes removed plus 3 risk factors, but ≤ 8% for women with no nodes removed or 1–5 nodes but no additional risk factors. Over half (55%) of those who developed lymphedema reported unmet need(s), particularly with lymphedema-related costs and pain. Conclusion: Lymphedema is common; experienced by one in eight women following endometrial cancer. Women who have undergone lymphadenectomy have very high risks of lymphedema and should be informed how to self-monitor for symptoms. Affected women need greater levels of support.

Perceived needs for supported self-management of type 2 diabetes : a qualitative investigation of the potential for a web-based intervention

The estimated one million Australians with type 2 diabetes face significant risks of morbidity and premature mortality. Inadequate diabetes self-management is associated with poor glycaemic control, which is further impaired by comorbid dysphoria. Regular access to ongoing self-management and psychological support is limited, especially in rural and regional locations. Web-based interventions can provide complementary support to patients’ usual care. Semi-structured interviews were undertaken with two samples that comprised (a) 13 people with type 2 diabetes and (b) 12 general practitioners (GPs). Interviews explored enablers and barriers to self-care, emotional challenges, needs for support, and potential web-based programme components. Patients were asked about the potential utility of a web-based support programme, and GPs were asked about likely circumstances of patient referral to it. Thematic analysis was used to summarise responses. Most perceived facilitators and barriers to self-management were similar across the groups. Both groups highlighted the centrality of dietary self-management, valued shared decision-making with health professionals, and endorsed the idea of web-based support. Some emotional issues commonly identified by patients varied to those perceived by GPs, resulting in different attributions for impaired self-care. A web-based programme that supported self-management and psychological/emotional needs appears likely to hold promise in yielding high acceptability and perceived utility.

Maternal employment, work experiences, and financial well-being of Australian mothers who care for young children with special health care needs

The employment and work experiences of mothers who care for young children with special health care needs is the focus of this study. It addresses a gap in the research literature, by providing an understanding of how mothers’ caring role may affect employment conditions, family life, and financial well-being. Quantitative data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children. The current study employs a matched case–control methodology to compare the experiences of a group of 292 mothers whose children (aged 4-5 years) with long-term special health care needs with those mothers whose children were typically developing. There were few differences between the two groups with regard to job characteristics and job quality. There were significant differences between the two groups with regard to work–family balance. Fewer mothers with children with special health care needs reported work having a positive effect on family functioning.

The educational context and services of children with additional needs in their first years of school in Australia

In Australia, children with additional needs are now primarily educated in mainstream regular classes and schools. While discussion has focused on teacher attitudes, teacher preparation and professional development to support the academic progress of children with additional needs, there is limited research examining the educational contexts and services provided to such children in Australian schools. This descriptive paper examines the educational contexts of 563 Australian children with additional needs, in reference to 3600 of their typically developing peers. Data in relation to educational setting, retention, prevalence of additional needs, access to specialist services, learning support, and individual programming are reported.

The silent and apparent neurological injury in transcatheter aortic valve implantation study (SANITY) : concept, design and rationale

Background The incidence of clinically apparent stroke in transcatheter aortic valve implantation (TAVI) exceeds that of any other procedure performed by interventional cardiologists and, in the index admission, occurs more than twice as frequently with TAVI than with surgical aortic valve replacement (SAVR). However, this represents only a small component of the vast burden of neurological injury that occurs during TAVI, with recent evidence suggesting that many strokes are clinically silent or only subtly apparent. Additionally, insult may manifest as slight neurocognitive dysfunction rather than overt neurological deficits. Characterisation of the incidence and underlying aetiology of these neurological events may lead to identification of currently unrecognised neuroprotective strategies. Methods The Silent and Apparent Neurological Injury in TAVI (SANITY) Study is a prospective, multicentre, observational study comparing the incidence of neurological injury after TAVI versus SAVR. It introduces an intensive, standardised, formal neurologic and neurocognitive disease assessment for all aortic valve recipients, regardless of intervention (SAVR, TAVI), valve-type (bioprosthetic, Edwards SAPIEN-XT) or access route (sternotomy, transfemoral, transapical or transaortic). Comprehensive monitoring of neurological insult will also be recorded to more fully define and compare the neurological burden of the procedures and identify targets for harm minimisation strategies. Discussion The SANITY study undertakes the most rigorous assessment of neurological injury reported in the literature to date. It attempts to accurately characterise the insult and sustained injury associated with both TAVI and SAVR in an attempt to advance understanding of this complication and associations thus allowing for improved patient selection and procedural modification.

Investigating tween children's capacity to conceptualise the complex issue of wellbeing

Wellbeing is an area that has gained increased global focus, particularly when considering children’s lives. With the growing focus on children’s wellbeing, it is apparent that this is an important aspect that is being considered in the policy and provision designed for children. The decision-making surrounding wellbeing provision for children typically occurs without the direct input of the children that these services are designed to benefit. With the children’s capacities being variably considered in wider society, opportunities for children to participate in decision-making on matters that affect them are often limited. The absence of children’s perspectives on matters that affect their lives, such as wellbeing, reveal that adults may be missing a key perspective when seeking to understand and cater for children’s wellbeing needs. This article outlines the results of a study that investigated how children aged 8 to 12 years o age (tweens) defined and conceptualised wellbeing. This article proposes that children can be included in the conceptualisation and development of policy and provision designed to benefit them and argues for increased presence of the voice and participation of children in wider societal initiatives.

Supporting the needs of public health decision-makers and review authors in the UK

Introduction Systematic reviews, through the synthesis of multiple primary research studies, can be powerful tools in enabling evidence-informed public health policy debate, development and action. In seeking to optimize the utility of these reviews, it is important to understand the needs of those using them. Previous work has emphasized that researchers should adopt methods that are appropriate to the problems that public health decision-makers are grappling with, as well as to the policy context in which they operate.1,2 Meeting these demands poses significant methodological challenges for review authors and prompts a reconsideration of the resources, training and support structures available to facilitate the efficient and timely production of useful, comprehensive reviews. The Cochrane Public Health Group (CPHG) was formed in 2008 to support reviews of complex, upstream public health topics. The majority of CPHG authors are from the UK, which has historically been at the forefront of efforts to promote the production and use of systematic reviews of research relevant to public health decision-makers. The UK therefore provides a suitably mature national context in which to examine (i) the current and future demands of decision-makers to increase the use, value and impact of evidence syntheses; (ii) the implications this has for the scope and methods of reviews and (iii) the required action to build and support capacity to conduct such reviews.

Further development of discrete computational techniques for calculation of restricted diffusion propagators in porous media

Magnetic resonance is a well-established tool for structural characterisation of porous media. Features of pore-space morphology can be inferred from NMR diffusion-diffraction plots or the time-dependence of the apparent diffusion coefficient. Diffusion NMR signal attenuation can be computed from the restricted diffusion propagator, which describes the distribution of diffusing particles for a given starting position and diffusion time. We present two techniques for efficient evaluation of restricted diffusion propagators for use in NMR porous-media characterisation. The first is the Lattice Path Count (LPC). Its physical essence is that the restricted diffusion propagator connecting points A and B in time t is proportional to the number of distinct length-t paths from A to B. By using a discrete lattice, the number of such paths can be counted exactly. The second technique is the Markov transition matrix (MTM). The matrix represents the probabilities of jumps between every pair of lattice nodes within a single timestep. The propagator for an arbitrary diffusion time can be calculated as the appropriate matrix power. For periodic geometries, the transition matrix needs to be defined only for a single unit cell. This makes MTM ideally suited for periodic systems. Both LPC and MTM are closely related to existing computational techniques: LPC, to combinatorial techniques; and MTM, to the Fokker-Planck master equation. The relationship between LPC, MTM and other computational techniques is briefly discussed in the paper. Both LPC and MTM perform favourably compared to Monte Carlo sampling, yielding highly accurate and almost noiseless restricted diffusion propagators. Initial tests indicate that their computational performance is comparable to that of finite element methods. Both LPC and MTM can be applied to complicated pore-space geometries with no analytic solution. We discuss the new methods in the context of diffusion propagator calculation in porous materials and model biological tissues.