bluuebunny/crossref_metadata_2025_split huggingface dataset:
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

AbstractBackgroundThe 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.ObjectiveThe 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.MethodsFor 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.ResultsThe 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.ConclusionsThe 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

AbstractBackgroundCD3 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.MethodsHere, 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.ResultsThe 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.DiscussionTo 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

ObjectiveThe 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.MethodsThis 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.ResultsUsing 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.ConclusionThe 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

ObjectivesThe objectives of the study were to establish whether district ideology was reflected in legislator ideal points in the 1996–1999 Duma.MethodsI 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.ResultsAccording to my results, legislators were responsive to district preferences on salient legislation such as final passage votes and key votes.ConclusionsThe 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

SummarySeeds 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.
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

ABSTRACT

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.
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

BackgroundEngaging 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.AimThe 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.MethodsCollaborative 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.Results25/25 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.DiscussionDiscussions 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.ConclusionEntrust-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

BackgroundIn 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.AimThe 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.MethodsQualitative methods were used including observation of class presentations, student interviews and opinions, written essays. Thematic analysis was applied to these data.ResultsThemes 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.DiscussionThe Ethics and Law unit successfully challenges students' notions about patients' autonomous rights versus clinician obligation for non-maleficence and beneficence.ConclusionStudents 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.
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

BackgroundSince 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.AimTo evaluate the attitudes and perceptions of trained ACP facilitators in TTSH.MethodAn anonymous cross-sectional survey in the form of a questionnaire was administered to all certified ACP facilitators in the hospital.ResultsA 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%).DiscussionWhile the attitudes of trained facilitators towards ACP are largely positive, there are significant barriers to ACP facilitation, namely a lack of time.ConclusionWhilst 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

BackgroundDespite 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 isAimTo 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.MethodResultsWe 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 conversationsDesign of ACP documents to reflect the complex nature of decision making in the cancer populationDesign of appropriate information materials and interventions to allow for healthcare decisions to be documented throughout the cancer trajectoryMethods to identify and target learning needs for staff in a cancer centrePolicy development and identification of key performance indicators for the cancer populations.Utilisation of a comprehensive research programme to inform and evaluate the above strategiesConclusionThe 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

BackgroundApart 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.AimTo assess the current status of organisation, actual practice and possible improvement of AD-consultation in Germany and thereby the need for structured ACP-programmes.MethodsA pilot study using a written questionnaire (Likert-Scale) completed by 33 consultants participating in a follow up meeting of a Bavarian Hospice Academy.ResultsA 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.DiscussionThe 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).ConclusionIt 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

BackgroundThe 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.AimThe 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.MethodsQualitative 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.ResultsResults 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.DiscussionThe 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.ConclusionThe 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

BackgroundThere 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.AimTo 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.MethodsA 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.ResultsSignificant 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).DiscussionSpecific 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.ConclusionNurses should consider including an advocacy for adapting regular Buddhist temple practice in the protocols for hypertensive Buddhist elderly.