bluuebunny/crossref_metadata_2025 huggingface dataset:
Prenatal and newborn screening for hemoglobinopathies
Authors: Hoppe C. C.
Published: April 2013

The hemoglobinopathies encompass a heterogeneous group of disorders associated with mutations in both the alpha‐globin and beta‐globin genes. Increased immigration of high‐risk populations has prompted the implementation of prenatal and newborn screening programs for hemoglobinopathies across Europe and North America. In Canada, the UK, and other European countries, prenatal screening to identify hemoglobinopathy carriers and offer prenatal diagnostic testing to couples at risk is linked to newborn screening, while in the United States, it is still not universally performed. The structure of screening programs, whether prenatal or postnatal, universal or selective, varies greatly among these countries and within the United States. The laboratory methods used to identify hemoglobinopathies are based on the prevalence of hemoglobinopathies within the population and the type of screening performed.

Advances in molecular testing have facilitated the diagnosis of complex thalassemias and sickling disorders observed in ethnically diverse populations. This review summarizes the current approaches and methods used for carrier detection, prenatal diagnosis, and newborn screening.
Body Temperature, Blood Infection Parameters, and Outcome of Thrombolysis-Treated Ischemic Stroke Patients
Authors: Tiainen Marjaana , Meretoja Atte , Strbian Daniel , Suvanto Joel , Curtze Sami , Lindsberg Perttu J. , Soinne Lauri , Tatlisumak Turgut ,   for the Helsinki Stroke Thrombolysis Registry Group‡
Published: April 2013

Background and Aims

Body temperature, inflammation, and infections may modify response to thrombolytic therapy. We studied their associations with clinical improvement after intravenous thrombolysis and three-month outcome.

Methods

We included 985 consecutive acute ischemic stroke patients treated with intravenous thrombolysis at the Helsinki University Central Hospital during 1995–2008. Body temperature, blood leukocyte count, and C-reactive protein levels were analyzed on arrival and at day one. Clinical improvement was defined as National Institutes of Health Stroke Scale score decrease of ≥4 points or a score of 0 at 24 h. Functional outcome was assessed at three-months with the modified Rankin Scale dichotomized at 0–2 (good) vs. 3–6 (poor). Associations were tested with multivariable logistic regression analysis.

Results

Of the baseline variables, lower C-reactive protein independently predicted clinical improvement at 24 h (odds ratio 0·94 per 5 mg/L; 95% confidence interval 0·89–1·00; P = 0·03), whereas higher leukocyte count (odds ratio 1·10 per E9/L; 1·03–1·17; P < 0·01) and C-reactive protein (odds ratio 1·07 per 5 mg/L; 1·01–1·14; P = 0·02) were associated with poor three-month outcome. When body temperature increased over the first 24 h, clinical improvement after thrombolysis was unlikely (odds ratio 0·66 per °C; 0·45–0·95; P = 0·03) and poor outcome more common (odds ratio 1·63 per °C; 1·24–2·14; P < 0·001). Elevated leukocytes at baseline increased the risk of symptomatic intracerebral hemorrhage (odds ratio 1·07 per E9/L; 1·00–1·13; P= 0·04).

Conclusion

A lower level of systemic inflammation at time of thrombolysis may be associated with clinical improvement and good outcome at three-months. Increase in body temperature during the first 24 h associates with lack of clinical improvement and worse patient outcome.
Use of oxybutynin for treating plantar hyperhidrosis
Authors: Wolosker Nelson , de Campos José Ribas Milanez , Kauffman Paulo , Yazbek Guilherme , Neves Samantha , Puech‐Leao Pedro
Published: April 2013

Background

To evaluate the effectiveness and patient satisfaction with the use of oxybutynin at low doses for treating plantar hyperhidrosis.

Methods

From January 2007 to December 2010, 35 consecutive patients with plantar hyperhidrosis were treated with oxybutynin. Data were collected from 30 patients (five patients were lost to follow‐up). During the first week, patients received 2.5 mg of oxybutynin once a day, 2.5 mg twice a day from the eighth to the 42nd day, and from the 43rd day to the end of the 12th week, 5 mg twice a day. All of the patients underwent two evaluations: before and after the oxybutynin treatment, using a clinical questionnaire, and a clinical protocol for quality of life.

Results

More than 70% of patients experienced an improvement in plantar hyperhidrosis. Most of the patients showed improvements in quality of life (66.6%). The side effects were minor, the most frequent being dry mouth (76.7%).

Conclusion

Treatment of plantar hyperhidrosis with oxybutynin presents good results and improves quality of life. We believe that this therapeutic alternative is an excellent choice for the initial treatment of plantar hyperhidrosis.
Cost‐effectiveness of pharmacotherapy forCOPDin ambulatory care: a review
Authors: Simoens Steven
Published: April 2013

Rationale, aims and objectives

This article conducts a literature review about the cost‐effectiveness of pharmacotherapy for chronic obstructive pulmonary disease (COPD) in ambulatory care.

Methods

Relevant economic evaluations were identified by searching Medline (PubMed) and the National Health Service (NHS) Economic Evaluation Database. The search strategy focused on literature reviews and primary economic evaluations. Economic evaluations were included, which compared pharmacotherapy forCOPD, chronic bronchitis or pulmonary emphysema with an alternative in terms of costs and health outcomes.

Results

The majority of economic evaluations show that pharmacotherapy forCOPDin ambulatory care is cost‐effective. Cost‐effectiveness derives from an improvement in lung function and a reduction in the number of exacerbations, which translates into cost savings from fewer hospitalizations. Pharmacotherapy also tends to be more cost‐effective in patients with more severeCOPD. When applying these results to a specific country or setting, the cost‐effectiveness of pharmacotherapy will depend on the distribution ofCOPDseverity among patients, the alternative with which pharmacotherapy is compared, the impact of pharmacotherapy on exacerbations, costs and treatment patterns of exacerbations, and price of pharmacotherapy. Economic evaluations tended to suffer from short‐time horizons, restricted scope of included costs and use of various health outcome measures.

Conclusions

There is a case to be made in favour of economic evaluations from the societal perspective that are based on a decision‐analytic model to allow for extrapolation beyond the duration of clinical trials and that use generic health outcome measures such as quality‐adjusted life years.
Design and Construction of a Batch Oven for Investigation of Industrial Continuous Baking Processes
Authors: Andresen Mette Stenby , Risum Jørgen , Adler‐Nissen Jens
Published: April 2013

A new batch oven has been constructed to mimic industrial convection tunnel ovens for research and development of continuous baking processes. The process parameters (air flow, air temperature, air humidity, height of baking area and the baking band velocity) are therefore highly controllable and adjustable over a wide range of settings. It is possible to monitor the product weight and temperature continuously during baking. The simultaneous measuring of mass and a window allowing for visual (e.g., by video recording) control is unique for this experimental batch oven. Two validation steps have been carried out. The uniformity of heating in the oven was assessed by measurements of local heat transfer coefficients and confirmed by baking tests. The methods showed that the oven is able to heat and bake uniformly across the baking area. Hereafter, the oven was validated against a commercial 10‐m tunnel oven, with a butter cookie as the test product. The investigated quality parameters for the butter cookies were mass loss and surface browning, where the uniformity of browning was evaluated subjectively against a scale of standards and objectively by L* value measurements. Good reproducibility of the baking was documented over a range of temperatures (160C to 190C).

Practical Applications

The purpose of this paper is to describe a new specially designed pilot scale batch oven. The batch oven is designed and constructed to imitate the baking processes in continuous tunnel ovens with forced convection. Experimental work in the new batch oven will increase knowledge of how the environment and baking conditions influence the quality of bakery products in continuous tunnel ovens.
Divergent successional pathways of stand development following fire in aCalifornia closed‐cone pine forest
Authors: Harvey Brian J. , Holzman Barbara A.
Published: April 2013

Questions

What are the major trends in vegetation community structure and forest stand structure over a 14‐yr post‐fire period in aCalifornia closed‐cone pine forest? Which biotic and abiotic factors best explain variation in stand structure at different stages of post‐fire succession, and does the relative importance of these factors remain constant? Is there evidence of multiple successional pathways of forest stand development?

Location

Post‐firePinus muricata(bishop pine) forests atPointReyesNationalSeashore,CA,USA.

Methods

We quantified post‐fire vegetation change from field data collected 1, 2, 6 and 14 yr following stand‐replacing wildfire that occurred in 1995. General linear models were used to assess trends in composition (plant functional groups and species diversity) and generalized linear models were used to assess trends in stand structure (post‐fireP. muricatadensity) and determine the relative importance of abiotic and biotic factors on stand structure in different early‐successional post‐fire years.

Results

Species richness and diversity peaked in the first 2 yr following fire, and then declined through year 14. Initial post‐fireP. muricatatree regeneration was high (mean 249 750 stems·ha−1in year 1) and remained well above pre‐fire stand density levels by year 14 (mean 15 179 stems·ha−1). Post‐fireP. muricataseedling density was associated with topographic factors in years 1 and 2, negatively associated with cover of a non‐native herb in year 2, and negatively associated with cover of an early/mid‐successional shrub and positively associated with slope in years 6 and 14. Two alternative pathways of post‐fire stand development have emerged by year 14. A high‐density, closed‐canopy pathway (mean 40 875 stems·ha−1) with early intra‐specific thinning resulted on steep slopes and ridges with low shrub cover. In contrast, a low‐density, open‐canopy pathway (mean 1250 stems·ha−1) resulted on gentle slopes and where shrub cover was high.

Conclusions

This study provides evidence of divergent successional pathways and illustrates the importance of early‐successional species interactions and topography on longer‐term stand development trajectories in serotinous conifer forests. Early heterogeneity in vegetation establishment set the course for variability in stand structure in mid‐seral stages and may persist into later stages.
Validation of the Paediatric Food Allergy Quality of Life Questionnaire (PFA‐QL)
Authors: Knibb Rebecca C. , Ibrahim Nur F. , Petley Rachel , Cummings Amanda J. , King Rosemary M. , Roberts Graham , Erlewyn‐Lajeunesse Michel , Lucas Jane S. A.
Published: April 2013

Background

The Paediatric Food Allergy Quality of Life Questionnaire (PFA‐QL) was the first tool to be developed for assessing health‐related quality of life (QoL) in children with food allergy. It has been used in a number of published studies, but has not been validated.

Objective

The aim of the current study was to validate child (PFA‐QL) and parent–proxy (PFA‐QL‐PF) versions of the scale in a specialist allergy clinic and in parents of children with food allergy.

Methods

For the clinic sample, a generic QoL scale (PedsQL) and the PFA‐QL were completed by 103 children (age 6–16 yrs) with peanut or tree nut allergy; test–retest reliability of the PFA‐QL was tested in 50 stable patients. For the non‐clinical sample, 756 parents of food allergic children completed the PFA‐QL‐PF, the Child Health Questionnaire (CHQ‐PF50), Food Allergy Quality of Life Parental Burden Scale (FAQL‐PB) and a Food Allergy Impact Measure.

Results

The PFA‐QL and PFA‐QL‐PF had good internal consistency (α's of 0.77–0.82), and there was moderate‐to‐good agreement between the generic‐ and disease‐specific questionnaires. The PFA‐QL was stable over time in the clinic sample, and in both samples, girls were reported to have poorer QoL than boys.

Conclusions

The PFA‐QL and PFA‐QL‐PF are reliable and valid scales for use in both clinical and non‐clinical populations. Unlike other available tools, they were developed and validated in the UK and thus provide a culture‐specific choice for research, clinical trials and clinical practice in the UK. Validation in other countries is now needed.
Variable presentation of primary immune deficiency: Two cases with CD3 gamma deficiency presenting with only autoimmunity
Authors: Tokgoz Huseyin , Caliskan Umran , Keles Sevgi , Reisli İsmail , Guiu Isabel Sánchez , Morgan Neil V.
Published: April 2013

Background

CD3 chain expression defects including CD3 gamma, epsilon, delta, and zeta chain subunits, are autosomal recessive inherited severe combined immunodeficiencies (SCID). The phenotype is usually T‐B+NK+ SCID with lymphopenia where the clinical findings may be mild (CD3γ) or severe (CD3δ, ε, ζ) owing to the underlying molecular defect. There is limited information about the disease in literature.

Methods

Here, we present two siblings from non‐consanguineous family with autoimmunity including Evans syndrome, autoimmune hepatitis, nephrotic syndrome, and Hashimoto's thyroiditis and with no previous history of infections. To define the molecular basis of the disease, we performed linkage analysis around the CD3 receptor cluster and found consistent linkage to this region.

Results

The patient one displayed low TCRαβ expression, low IgG, low IgA, low IgM, low CD3, low CD4, low CD8. The patient two also displayed low TCRαβ expression and low anti‐HBs titer. We went onto identify a homozygous splicing mutation (IVS2‐1G>C) in the two affected individuals in the CD3γ gene.

Discussion

To date, only four cases have been reported with CD3γ deficiency. Occasionally, the patients present with only autoimmunity including autoimmune hemolytic anemia, vitiligo, Hashimoto's thyroiditis, and autoimmune enteropathy. However, Evans syndrome, autoimmune hepatitis, and nephrotic syndrome have not been reported in previous cases. We believe that our cases will contribute to the literature.
Co‐Pay and Feel Okay: Self‐Rated Health Status After a Health Insurance Reform
Authors: Paloyo Alfredo R.
Published: April 2013

Objective

The reliability of general self‐rated health status is examined using the reform of the public health insurance system of Germany in 2004 as a source of exogenous variation. The reform introduced a co‐payment for ambulatory doctor visits and increased the co‐payments for prescription drugs.

Methods

This natural experiment allows identification of the causal impact of the program on self‐assessed health (SAH). A difference‐in‐differences estimator is applied to estimate the effect of the reform on SAH.

Results

Using data from the German Socio‐Economic Panel, the results indicate that the reform improved the treatment group's average SAH even when there was no discernible impact on actual health.

Conclusion

The exercise reveals the sensitivity of SAH to a perturbation in the insurance system. More objective measures of health may be needed to acquire an accurate assessment of general health when the health system is in flux.
Representation in Hybrid Regimes: Constituency and Party Influences on Legislative Voting in the Russian Duma 1996–1999
Authors: Bagashka Tanya
Published: April 2013

Objectives

The objectives of the study were to establish whether district ideology was reflected in legislator ideal points in the 1996–1999 Duma.

Methods

I integrate for the first time individual‐level survey data on citizen attitudes to economic reform, the major dimension of political conflict in Russia in the 1990s, with individual legislator voting records from the 1996 to 1999 Duma. Using a Bayesian method, I estimate legislator ideal points as a function of individual and district characteristics and an individually specific random shock to assess the direct effect of district ideology and party membership.

Results

According to my results, legislators were responsive to district preferences on salient legislation such as final passage votes and key votes.

Conclusions

The findings have implications for the effects of a mixed electoral system, which was introduced in many young democracies in Eastern Europe and Latin America. The broader conclusion of the study is that the electoral incentives in the single‐member district component of the election can encourage legislative responsiveness even in a “partial” democracy such as Russia.
Temperature, light and nitrate sensing coordinate Arabidopsis seed dormancy cycling, resulting in winter and summer annual phenotypes
Authors: Footitt Steven , Huang Ziyue , Clay Heather A. , Mead Andrew , Finch‐Savage William E.
Published: April 2013

Seeds use environmental cues to sense the seasons and their surroundings to initiate the life cycle of the plant. The dormancy cycling underlying this process is extensively described, but the molecular mechanism is largely unknown. To address this we selected a range of representative genes from published array experiments in the laboratory, and investigated their expression patterns in seeds of Arabidopsis ecotypes with contrasting life cycles over an annual dormancy cycle in the field. We show how mechanisms identified in the laboratory are coordinated in response to the soil environment to determine the dormancy cycles that result in winter and summer annual phenotypes. Our results are consistent with a seed‐specific response to seasonal temperature patterns (temporal sensing) involving the gene DELAY OF GERMINATION 1 (DOG1) that indicates the correct season, and concurrent temporally driven co‐opted mechanisms that sense spatial signals, i.e. nitrate, via CBL‐INTERACTING PROTEIN KINASE 23 (CIPK23) phosphorylation of the NITRATE TRANSPORTER 1 (NRT1.1), and light, via PHYTOCHROME A (PHYA). In both ecotypes studied, when all three genes have low expression there is enhanced GIBBERELLIN 3 BETA‐HYDROXYLASE 1 (GA3ox1) expression, exhumed seeds have the potential to germinate in the laboratory, and the initiation of seedling emergence occurs following soil disturbance (exposure to light) in the field. Unlike DOG1, the expression of MOTHER of FLOWERING TIME (MFT) has an opposite thermal response in seeds of the two ecotypes, indicating a role in determining their different dormancy cycling phenotypes.
Measurement of the Thermal Conductivity of Silicon Dioxide Nanofluid and Development of Correlations
Authors: Sahoo Bhaskar C. , Das Debendra K. , Vajjha Ravikanth S. , Satti Jagannadha R.
Published: April 2013

Experimental investigations were carried out for the determination of thermal conductivity of silicon dioxide (SiO2) nanoparticles dispersed in 60% ethylene glycol and 40% water by mass. Experiments conducted in a temperature range of 20 °C to 90 °C and for several particle volumetric concentrations up to 10% showed that the ratio of thermal conductivity of nanofluid to that of the base fluid increased with an increase in temperature and volumetric concentration. As an example, as much as a 20% enhancement in thermal conductivity was evidenced for a particle volumetric concentration of 10% at 87 °C. Comparison of experimental results of this nonmetallic nanoparticles suspension with the well-known model developed by Hamilton and Crosser for microparticles suspensions, exhibits that this model underpredicts the thermal conductivity of nanofluids. Therefore, a new correlation has been derived following recent models developed for metallic nanoparticles suspensions, which is a combination of the Hamilton–Crosser model plus a term due to the Brownian motion. This new correlation expresses the thermal conductivity of silicon dioxide nanofluid as a function of temperature, volumetric concentration and the properties of the base fluid and the nanoparticles.
Systems and Capacity to Address Noncommunicable Diseases in Low- and Middle-Income Countries
Authors: Ali Mohammed K. , Rabadán-Diehl Cristina , Flanigan John , Blanchard Claire , Narayan K. M. Venkat , Engelgau Michael
Published: April 2013

Further progress in addressing noncommunicable diseases in low- and middle-income countries will require strengthening of both capacity and systems.
Systematic Analysis of Challenge-Driven Improvements in Molecular Prognostic Models for Breast Cancer
Authors: Margolin Adam A. , Bilal Erhan , Huang Erich , Norman Thea C. , Ottestad Lars , Mecham Brigham H. , Sauerwine Ben , Kellen Michael R. , Mangravite Lara M. , Furia Matthew D. , Vollan Hans Kristian Moen , Rueda Oscar M. , Guinney Justin , Deflaux Nicole A. , Hoff Bruce , Schildwachter Xavier , Russnes Hege G. , Park Daehoon , Vang Veronica O. , Pirtle Tyler , Youseff Lamia , Citro Craig , Curtis Christina , Kristensen Vessela N. , Hellerstein Joseph , Friend Stephen H. , Stolovitzky Gustavo , Aparicio Samuel , Caldas Carlos , Børresen-Dale Anne-Lise
Published: April 2013

An open challenge to model breast cancer prognosis revealed that collaboration and transparency enhanced the power of prognostic models.
Enterococcus faecium Biofilm Formation: Identification of Major Autolysin AtlA
Efm
, Associated Acm Surface Localization, and AtlA
Efm
-Independent Extracellular DNA Release
Authors: Paganelli Fernanda L. , Willems Rob J. L. , Jansen Pamela , Hendrickx Antoni , Zhang Xinglin , Bonten Marc J. M. , Leavis Helen L.
Published: April 2013

Enterococcus faecium
is an important multidrug-resistant nosocomial pathogen causing biofilm-mediated infections in patients with medical devices. Insight into
E. faecium
biofilm pathogenesis is pivotal for the development of new strategies to prevent and treat these infections. In several bacteria, a major autolysin is essential for extracellular DNA (eDNA) release in the biofilm matrix, contributing to biofilm attachment and stability. In this study, we identified and functionally characterized the major autolysin of
E. faecium
E1162 by a bioinformatic genome screen followed by insertional gene disruption of six putative autolysin genes. Insertional inactivation of locus tag EfmE1162_2692 resulted in resistance to lysis, reduced eDNA release, deficient cell attachment, decreased biofilm, decreased cell wall hydrolysis, and significant chaining compared to that of the wild type. Therefore, locus tag EfmE1162_2692 was considered the major autolysin in
E. faecium
and renamed
atlA

Efm

. In addition, AtlA
Efm
was implicated in cell surface exposure of Acm, a virulence factor in
E. faecium
, and thereby facilitates binding to collagen types I and IV. This is a novel feature of enterococcal autolysins not described previously. Furthermore, we identified (and localized) autolysin-independent DNA release in
E. faecium
that contributes to cell-cell interactions in the
atlA

Efm

mutant and is important for cell separation. In conclusion, AtlA
Efm
is the major autolysin in
E. faecium
and contributes to biofilm stability and Acm localization, making AtlA
Efm
a promising target for treatment of
E. faecium
biofilm-mediated infections.

IMPORTANCE
Nosocomial infections caused by
Enterococcus faecium
have rapidly increased, and treatment options have become more limited. This is due not only to increasing resistance to antibiotics but also to biofilm-associated infections. DNA is released in biofilm matrix via cell lysis, caused by autolysin, and acts as a matrix stabilizer. In this study, we identified and characterized the major autolysin in
E. faecium
, which we designated AtlA
Efm
.
atlA

Efm

disruption resulted in resistance to lysis, reduced extracellular DNA (eDNA), deficient cell attachment, decreased biofilm, decreased cell wall hydrolysis, and chaining. Furthermore, AtlA
Efm
is associated with Acm cell surface localization, resulting in less binding to collagen types I and IV in the
atlA

Efm

mutant. We also identified AtlA
Efm
-independent eDNA release that contributes to cell-cell interactions in the
atlA

Efm

mutant. These findings indicate that AtlA
Efm
is important in biofilm and collagen binding in
E. faecium
, making AtlA
Efm
a promising target for treatment of
E. faecium
infections.
High-dose daptomycin monotherapy curesStaphylococcus epidermidis‘endotipsitis’ after failure of conventional therapy
Authors: Colston Julia Marie , Scarborough Matthew , Collier Jane , Bowler Ian C J W
Published: April 2013

A 67-year-old gentleman developed persistentStaphylococcus epidermidisbacteraemia following transjugular intrahepatic portal shunting. ‘Endotipsitis’ was diagnosed. Conventional therapy with a vancomycin infusion, amikacin and rifampicin failed after 17 days. He was cured with a 6-week course of high-dose (8 mg/kg) daptomycin monotherapy.
Therapeutic use exemptions (TUEs) at the Olympic Games 1992–2012
Authors: Fitch Kenneth D
Published: April 2013

The need for therapeutic use exemptions (TUEs) or the permitted use of Prohibited Substances and Prohibited Methods by athletes to treat significant medical conditions arose when several classes of drugs used commonly in medicine were prohibited in sport by the International Olympic Committee (IOC) during the 1980s. However, although the IOC Medical Commission (IOC-MC) gave qualified support for the concept to formally start at the 1992 Barcelona Olympics, the Commission's fears that athletes might abuse the mechanism resulted in minimal publicity and its non-inclusion in the Medical Code of the Olympic Movement for 8 years. TUEs would not be widely publicised until the advent of the World Anti-Doping Agency which not only approved the principles of TUEs as developed by the IOC's Medications Advisory Committee (MAC) in 1991, but also introduced the name of TUE. Several changes to the Prohibited List have resulted in TUEs being necessary for substances that were permitted 20 years ago as disclosed in a review of TUEs approved at the 11 Olympic Games that the IOC's MAC, later the TUE Committee (TUEC), has operated. The IOC and its TUEC played a pivotal role in developing the concept of TUE which is now globally accepted.
ACP FOR HEALTHY OLDER ADULTS: STRATEGIES AND TOOLS FOR A PUBLIC HEALTH APPROACH
Authors: Street A , Threlkeld G , Blackford J , Bidstrup B , Downing J
Published: April 2013

Background

Engaging older community-dwelling healthy adults in ACP discussions is an international public health challenge that requires social strategies to ensure uptake of ACP in non clinical settings.

Aim

The entrust-u study developed and tested an approach to ACP with older adults in rural communities that addressed guiding values, appointment of a decision maker, content of ACP discussions for healthy adults, documenting conversations and informing GPs.

Methods

Collaborative action research was conducted over three cycles of planning, action, evaluation and reflection to develop and test the entrust-u process. We tested the use of life review, ecomaps and the ‘Go Wish’ game as strategies through interviews, focus groups and analysis of life reviews with 25 older people, 7 palliative care volunteers and four co-ordinators.

Results

25/25 older people completed a Future Wishes document, 18/25 appointed a substitute decision maker and 14/16 requested a follow up letter to their GP. All volunteers completed or re-visited their own MEPOAs and Future Wishes documents. We developed and refined a volunteer training module to be included in the Palliative Care Volunteers Kit that included a Train the Trainer process and a manual for coordinators of volunteers.

Discussion

Discussions on preparation for death require a range of strategies and tools. We worked collaboratively with rural community palliative care services to initiate discussions on facing death and ACP through a three-stage flexible structured interview process.

Conclusion

Entrust-u used a variety of tools and strategies to successfully involve palliative care volunteers in conducting ACP discussions with older people.
UNDERGRADUATE NURSING STUDENTS' PERCEPTIONS ABOUT WEST AUSTRALIAN ADVANCE CARE PLANNING LEGISLATION
Authors: Smith V G
Published: April 2013

Background

In an undergraduate nursing programme, discussions of what advanced care planning means to individuals resulted in some students questioning whether advanced care planning legislation in Western Australia goes far enough or if it should also include voluntary active euthanasia.

Aim

The purpose of these classroom discussions was to ensure future Registered Nurses had a clear understanding of the limits of the WA ACP legislation in relation to their legal obligations as a registered health professional.

Methods

Qualitative methods were used including observation of class presentations, student interviews and opinions, written essays. Thematic analysis was applied to these data.

Results

Themes included: the conflict between personal versus professional ethics; clear understand that WA ACP legislation covers what a person may refuse, but does not include mode of death; individual conflict about what the words ‘beneficence’ and ‘non-maleficence’ really mean; the legal fact no-one has the right to self-determination about their death.

Discussion

The Ethics and Law unit successfully challenges students' notions about patients' autonomous rights versus clinician obligation for non-maleficence and beneficence.

Conclusion

Students demonstrate a depth of comprehension and compassion about WA ACP legislation, and significantly, how this may impact on their role as Registered Nurses in the future.
ADVANCE CARE PLANNING: A PARENT'S PERSPECTIVE
Authors:   TBC
Published: April 2013

No abstract
PERCEPTIONS OF BENEFITS AND BARRIERS IN CONDUCTING ADVANCE CARE PLANNING: A CROSS-SECTIONAL SURVEY OF TRAINED ADVANCE CARE PLANNING FACILITATORS
Authors: Ng R , Chong R
Published: April 2013

Background

Since 2010, within Tan Tock Seng Hospital (TTSH), pilot projects in advance care planning (ACP) were initiated with patients with chronic disease, organ failure and advanced illnesses such as terminal cancer.

Aim

To evaluate the attitudes and perceptions of trained ACP facilitators in TTSH.

Method

An anonymous cross-sectional survey in the form of a questionnaire was administered to all certified ACP facilitators in the hospital.

Results

A total of 59 trained facilitators, comprising nurses (36%), doctors (29%), medical social workers (25%) and case managers (8%) responded to the survey. Majority (95%) of respondents favour ACP and 86% consider ACP as one of their roles. More than 90% respondents felt that ACP promotes patient-centred care, improves communication, and reduces burden of decision making on families. Most of the time (53%), initiation of ACP was by doctors.

90% respondents felt that ACP is challenging to conduct. Major barriers to conducting ACP are lack of time (66%), perception of low receptivity to ACP in patients' families (53%), patients' lack of understanding of ACP (50%) as well as language barriers (48%).

Discussion

While the attitudes of trained facilitators towards ACP are largely positive, there are significant barriers to ACP facilitation, namely a lack of time.

Conclusion

Whilst it helps to spread advocacy for and practice of ACP in training facilitators from multiple healthcare disciplines, there is also a need for careful consideration of resource allocation such as dedicated ACP facilitators, for successful implementation of ACP.
DEVELOPING AND IMPLEMENTING A CANCER SPECIFIC MODEL OF ADVANCE CARE PLANNING IN AN AUSTRALIAN CANCER CENTRE: LESSONS FROM PRACTICE
Authors: Baird Angela , O'Callaghan Clare , Michael Natasha
Published: April 2013

Background

Despite increasing evidence that Advance Care Planning (ACP) can improve end-of-life care, the majority of cancer patients do not engage in this initiative. A key barrier to this is

Aim

To develop a multifaceted programme of service development, education, and research to meet specific organisational needs as well as national and accreditation requirements on ACP in Australia.

Method

Results

We will present the successes and challenges of various interventions undertaken including:

Electronic enhancement of current Health Information Services to ensure visibility of information and to allow for a more dynamic system to document ongoing conversations

Design of ACP documents to reflect the complex nature of decision making in the cancer population

Design of appropriate information materials and interventions to allow for healthcare decisions to be documented throughout the cancer trajectory

Methods to identify and target learning needs for staff in a cancer centre

Policy development and identification of key performance indicators for the cancer populations.

Utilisation of a comprehensive research programme to inform and evaluate the above strategies

Conclusion

The implementation of a cancer specific model of ACP is a complex intervention requiring the development of an organised clinical microsystem. Challenges which emerge throughout the implementation process will be delineated. Lessons learned will guide ongoing development of the disease specific ACP model in the cancer centre and its feasibility will be examined in a Phase II study of patients with advanced cancer.
PRACTICE OF CONSULTATION FOR ADVANCE DIRECTIVES IN GERMANY: A PILOT STUDY OF CONSULTANTS TRAINED BY A BAVARIAN HOSPICE ACADEMY
Authors: Petri S , Marckmann G
Published: April 2013

Background

Apart from the pilot projectbeizeiten begleiten, Advance Care Planning (ACP) programmes are still not widely implemeted in Germany. There is, however, an increasing number of organisations and individuals offering consultation for advance directives (ADs). So far, there is hardly any knowledge about their consulting profile and thereby the quality of ACP in Germany.

Aim

To assess the current status of organisation, actual practice and possible improvement of AD-consultation in Germany and thereby the need for structured ACP-programmes.

Methods

A pilot study using a written questionnaire (Likert-Scale) completed by 33 consultants participating in a follow up meeting of a Bavarian Hospice Academy.

Results

A typical consultation is initiated by the consulted individual himself, takes between 60–90 min and includes one meeting. The age of the consults is predominately between 61–80 years, they seem to be healthy. 27% of the participants has no or rarely knowledge about the health status of the consults. 97% use the same form for AD (Bayerisches Staatsministerium der Justiz), 100% inform about a proper custody. 91% suggest to invite a person of trust and report a positive experience of such an integration. They never or rarely exchange with other care providers.

Discussion

The results of this pilot study show that these current AD consultation practices do not yet fully meet the quality criteria of international ACP-programmes (eg, initiatiate conversations, ACP process with several meetings, planning with health care provider, update of plans).

Conclusion

It underlines the need for more comprehensive ACP-programmes.
MAPPING THE ROLE AND FUNCTION OF CARE ADVISORS WORKING FOR THE MOTOR NEURONE DISEASE ASSOCIATION (WA)
Authors: Smith V G
Published: April 2013

Background

The role and function of Care Advisors working for the Motor Neurone Disease Association of Western Australia (MNDA[WA]) has been poorly defined or explained. The high turnover of cares has been suggested to be caused by ‘terminal burnout’ due to the ongoing support carers provide to people living with an aggressive, degenerative neurological condition with death often occurring within months of diagnosis.

Aim

The purpose of this research will be to describe the role and function of the MNDA (WA) Care Advisors, find if there are supports for these clinicians which are currently not being met, with the intention of increasing retention of staff.

Methods

Qualitative methods will be used including: a literature review of current best practice; observation of interactions with clients; Care Advisor interviews; MND patient interviews about what they see as the role and function of Care Advisors; and review of any workplace guidelines, policies and procedures relating to supportive measures available to the Care Advisors. Thematic analysis will be applied to these data.

Results

Results will be presented to the key organisations to underpin development of a supportive framework for Care Advisors. This information will also be submitted to various journals to advance the general world knowledge about MND carers.

Discussion

The discussion at this point relates to the anticipated findings and potential benefits of the research. It is anticipated this research may be generalisable to carers for other disease conditions.

Conclusion

The research will generate increased knowledge and understanding about the role and function of Care Advisors working with people living with MND.
USING A TEMPLE-BASED EDUCATION PROGRAMME ON BLOOD PRESSURE REDUCTION AMONG BUDDHIST ELDERLY IN RURAL UTTARADIT PROVINCE, NORTHERN THAILAND
Authors: Stewart O , Yamarat K , Holroyd E , Neeser K J , Lertmaharit S , Phuangnak P
Published: April 2013

Background

There has been substantial debate about the contribution of religious practices to alleviating hypertension with some established evidence among African American. However, Buddhist settings, there has been limited studies of effect of religion on blood pressure reduction.

Aim

To determine the effectiveness of a Buddhist temple-based education programme on blood pressure reduction and improving the behavioural changes of exercise, salt intake, intention to visit the physician as well as antihypertensive medications.

Methods

A quasi-experimental design was adopted. The study comprised of; (1) the intervention group and (2) the control group. Both groups consisted of 73 persons aged 60 years and above. Data was obtained at baseline and 6 months after the intervention. Temple committee members were trained to be as programme educators. Posters of knowledge about high blood pressure or modifying behaviours on exercise, salt intake and visiting the physician/on antihypertensive medications were placed in strategic locations within the temple environment.

Results

Significant reduction in systolic blood pressure was found among participants of the intervention group (p<0.001). Moreover, systolic blood pressure in the intervention group was found to be significantly lower than that of the control group (p<0.05). In addition, significant behavioural improvement in regards to exercise and salt intake were found among participants of the intervention group compared to the control group (exercise = p<0.001; salt intake=p<0.001). However, no significant difference between the intervention and control groups was detected on diastolic blood pressure (p=0.746) and behaviour on visiting the physician/on antihypertensive medications (p=0.340).

Discussion

Specific aspect of temple-based education programme can be advocated to an effective way to reduce blood pressure and improve behavioural changes on exercise and salt intake.

Conclusion

Nurses should consider including an advocacy for adapting regular Buddhist temple practice in the protocols for hypertensive Buddhist elderly.
ADVANCE CARE PLANNING FOR DEMENTIA PATIENTS
Authors: McGee Andrew
Published: April 2013

Background

There is currently some debate about the extent to which advance decisions, advance statements of wishes and preferences, or other forms of advanced care planning should be followed when they are undertaken by a patient who subsequently loses capacity. Two main arguments commonly advanced to support the claim that these forms of advanced planning are problematic are: (a) the person who loses capacity is not the same person as the one who had capacity; and (b) the person retains certain autonomy in addition to welfare interests and so cannot be bound by priorly taken decisions or expressed wishes.

Aim

This paper re-examines these two main arguments in the context of dementia patients. It rejects the first argument. However, it argues that the second argument is important and is often correct. Its correctness can only be determined in a case by case basis, taking into account all relevant circumstances. Nonetheless, this has implications for how we ought to draw up an advance decision that is to be legally binding, and for whether we ought to consider alternative forms of advance care planning. One alternative put forward in theNuffield Dementia Report 2009is a form of proxy decision making. This paper examines that proposal.

Methods

Conceptual analysis of arguments (a) and (b), with some reference to the relevance of a recent English case to advance statements of wishes and preferences.

Results

The paper concludes that argument (a) can be rejected, but that argument (b) is sound and has implications for the forms of advance care planning we ought to adopt in the case of dementia patients, and for the shape that current advance decisions now take.

Discussion

A form of proxy decision making might be the best way of resolving the dilemma about how to respect autonomy and welfare interests that survive the loss of capacity in dementia patients.

Conclusion

The form of proxy decision making proposed in theNuffield Dementia Report 2009is the best way of solving the dilemma and might be preferable to legally binding advance decisions.
IMPLEMENTATION OF ADVANCE CARE PLANNING (ACP) IN GENERAL PRACTICE THROUGH THE PROVISION OF OUTREACH ACP FACILITATORS
Authors: Mann J , Milner R
Published: April 2013

Background

Following the success of the smaller 2010 pilot study, this initiative was 12 month collaboration between Barwon Health's Respecting Patient Choices (RPC) program, 18 General Practice Clinics from within the Barwon region and the Barwon Medicare Local.

Table 1

General Practice ACP Activity 2012

ActivityGP Project ActivityOverall Program Activity (Total Activity)Referrals13452071Completed Plans11741531Declined2561Deceased16139

Aim

To engage with General Practitioners in providing advance care planning (ACP) to their patients demonstrating a sustainable ACP model for general practice.

Methods

Funding provided by Barwon Health for 2.0 EFT ACP Facilitator positions.

Key stakeholders were engaged and Memorandum of Understanding developed.

Participating practices were identified through an expression of interest and GPs were encouraged to complete their own ACP. Patients with chronic or life limiting illness and aged were the target population including other interested individuals. This was achieved via the >75 Health Assessment, Chronic Disease Management Planning and routine consultations. Engagement with GP staff occurred collaboratively with Barwon Medicare Local throughout the project period.

Results

Providing trained staff from a funded ACP program to 18 practices in the Geelong region has resulted in 1350 referrals for ACP and a completion rate of 87% (1174). From this cohort, there have been 295 in-patient episodes of care with a number of ACP's implemented as required.

Discussion

Similar findings to the smaller 2010 pilot study have been demonstrated through patients exhibiting a high rate of acceptance, participation, document completion and satisfaction when ACP is provided through GP's.

Conclusion

This larger study has demonstrated that General Practice is integral to the commencement of ACP discussions in the community, where there is established trust and confidence and whilst patients are ‘relatively well’, in the absence of acute illnesses. Barwon Health's catchment includes a higher proportion of older persons in comparison to the state average and is therefore significant that the general awareness of ACP is raised routinely within the community.

Table 2

Barwon Health's Respecting Patient Choices program data

2006–2007 (2 years)20082009201020112012Referrals5004405347368012045Contacts10341473198126524521Completed plans2481972693634061509Declined2219302358Reviews24214433711912Deaths683689106135135
ADVANCED CARE PLANNING WITHIN JEWISH ETHICAL PRINCIPLES
Authors: Rousso R , Lefebure M
Published: April 2013

Background

Advanced care planning requires ethno-specific organisations to balance the local regulations concerning respect for individual decision making and respect for cultural guidance regarding service provision. Unfortunately, these guidelines often do not agree. At Jewish Care, an ethno-specific organisation, this is particularly significant because secular end of life care provisions will more often than not conflict with the values guiding the medical and nursing care within the organisation.

Aim

To develop an ethno-specific Advanced Care Plan that takes into account government guidelines and is respectful of religious imperatives guiding end of life care.

Methods

Utilising an external survey and an internal interview process, statistical data and results were collected identifying a gap between a cultural imperative and present contemporary thoughts of the dynamic community we serve.

Results

A person-centred advanced care has was developed to enable our ethno-specific organisation to support residents/clients and their families with care that meets their needs whilst also providing support within a Jewish ethical framework. This new model has successfully bridged the gap between cultural imperatives and respecting individual resident and client choice.

Discussion

We have found that this new model overcomes the boundary of confliction and assists to alleviate many if not all fears and uncertainties pertaining to accommodating residents' and clients' personal wishes regarding their future medical preferences and end of life care.

Conclusion

It is proposed that the model developed by Jewish Care Victoria may be helpful for other ethno-specific organisations facing similar challenges regarding a conflict between respecting individual wishes within a national secular framework, whilst having regard to ethnic-religious guiding principles.
Analytical approach for estimating ground deformation profile induced by normal faulting in undrained clay
Authors: Cai Q.P. , Ng Charles W.W.
Published: April 2013

Although theoretical models have been developed to predict the location of the failure surface in soil induced by bedrock faulting, no analytical tool is available to estimate subsurface ground deformation. In this paper, a newly developed semi-empirical approach is introduced and developed for calculating surface and subsurface deformations induced by normal faulting in undrained clay. Based on observations from centrifuge model tests, the ground deformation mechanisms are identified by three regions; namely, a stationary zone, a shearing zone, and a rigid body zone. By using an error function to represent vertical displacement continuously, the ground deformation profile can be described quantitatively. It is revealed that the ground deformation profile depends on vertical displacement of the bedrock hanging wall, soil thickness, dip angle of the bedrock fault plane, and a shape parameter that is a function of the undrained shear modulus normalized by the undrained shear strength. Validation and consistent agreement are obtained between calculated ground deformation profiles and other independent centrifuge test results and reported numerical data.