bluuebunny/crossref_metadata_2025 huggingface dataset:
Prevalence of Serum Bactericidal Antibody to Serogroup C Neisseria meningitidis in England a Decade after Vaccine Introduction
Authors: Ishola David A. , Borrow Ray , Findlow Helen , Findlow Jamie , Trotter Caroline , Ramsay Mary E.
Published: May 2012

Serogroup C meningococcal disease incidence and carriage declined rapidly in the United Kingdom after infant serogroup C conjugate vaccination was introduced in 1999, with catch-up vaccination for children under 18 years. Antibody levels and effectiveness waned quickly in children vaccinated at 2, 3, and 4 months of age. Therefore, in 2006, the current revised schedule of doses at 3, 4, and 12 months was introduced. This study assessed age-specific protection in 2009 compared with data from historical prevaccination and early postvaccination studies. Rabbit complement serum bactericidal antibody (SBA) was measured in anonymously banked serum samples collected in England in 2009 (n= 1,174), taking titers of ≥8 as protective. Age-stratified proportions of SBA titers that were ≥8 and geometric mean titers were compared. SBA titers varied markedly by birth cohort and time since vaccination. Overall, 35% of samples (95% confidence interval [CI], 33 to 38%) had titers that were ≥8. Only in cohorts eligible for catch-up vaccination did the majority of individuals have protective antibody levels. Antibody levels were higher in children eligible for vaccination at primary and secondary school ages, compared to those eligible below the age of 5 years. In those eligible for completed vaccination under the current schedule, protective levels were very modest and there was no evidence of superiority to cohorts that were eligible for the previous schedule. This supports a need for older childhood or adolescent booster vaccination in those previously eligible for vaccination during the infant, toddler, or preschool periods, to maintain direct protection and potentially enhance population immunity.
Quantification of Mycobacterium avium subsp. paratuberculosis Strains Representing Distinct Genotypes and Isolated from Domestic and Wildlife Animal Species by Use of an Automatic Liquid Culture System
Authors: Abendaño Naiara , Sevilla Iker , Prieto José M. , Garrido Joseba M. , Juste Ramon A. , Alonso-Hearn Marta
Published: May 2012

Quantification of 11 clinical strains of
Mycobacterium avium
subsp.
paratuberculosis
isolated from domestic (cattle, sheep, and goat) and wildlife (fallow deer, deer, wild boar, and bison) animal species in an automatic liquid culture system (Bactec MGIT 960) was accomplished. The strains were previously isolated and typed using IS
1311
PCR followed by restriction endonuclease analysis (PCR-REA) into type C, S, or B. A strain-specific quantification curve was generated for each
M. avium
subsp.
paratuberculosis
strain by relating the time to detection in the liquid culture system to the estimated log
10
CFU in each inoculum. According to their growth curves, the tested
M. avium
subsp.
paratuberculosis
strains were classified into two distinct groups. The first group included the S-type strain isolated from goat and all the sheep strains with C, S, and B genotypes. A second group contained the C- and B-type strains isolated from cattle, goat, and wildlife animals with the exception of the fallow deer strain. The strains isolated from cattle or sheep showed similar strain-specific standard curves irrespective of their genotype. In contrast, the strains isolated from goat or from wildlife animal species varied in their rates of growth in liquid culture. Universal-standard curves and algorithms for the quantification of each group of strains were generated. In addition, the liquid culture system was compared with a real-time quantitative PCR system for the quantification of the 11
M. avium
subsp.
paratuberculosis
strains. Correlations between the estimated log
10
CFU and
M. avium
subsp.
paratuberculosis
DNA copy numbers were very high for all the tested strains (
R
≥ 0.9).
Molecular Typing and Resistance Analysis of Travel-Associated Salmonella enterica Serotype Typhi
Authors: Tatavarthy A. , Sanderson R. , Peak K. , Scilabro G. , Davenhill P. , Cannons A. , Amuso P.
Published: May 2012

Salmonella enterica
serotype Typhi is a human pathogen causing 12 to 30% mortality and requiring antibiotic therapy to control the severity of the infection. Typhoid fever in United States is often associated with foreign travel to areas of endemicity. Increasing resistance to multiple drugs, including quinolones, is associated with decreased susceptibility to ciprofloxacin (DCS). We investigated 31 clinical strains isolated in Florida from 2007 to 2010, associated with travel to six countries, to examine the clonal distribution of the organism and apparent nalidixic acid (NAL) resistance. The strains were isolated from blood or stool of patients aged 2 to 68 years. The isolates were subtyped by ribotyping and pulsed-field gel electrophoresis. Susceptibilities to 15 antimicrobials were determined, and the isolates were screened for integrons and gyrase A gene mutations. Both typing techniques effectively segregated the strains. Identical clones were associated with different countries, while diverse types coexisted in the same geographic location. Fifty-one percent of the strains were resistant to at least one antimicrobial, and five were resistant to three or more drugs (multidrug resistant [MDR]). All 12 isolates from the Indian subcontinent were resistant to at least one drug, and 83% of those were resistant to NAL. Three of the MDR strains harbored a 750-bp integron containing the
dfr7
gene. Ninety-three percent of the resistant strains showed a DCS profile. All the NAL-resistant strains contained point mutations in the quinolone resistance-determining region of
gyrA
. This study affirms the global clonal distribution, concomitant genetic heterogeneity, and increased NAL resistance of
S. enterica
serovar Typhi.
Multiclonal Origin of Macrolide-Resistant Mycoplasma pneumoniae Isolates as Determined by Multilocus Variable-Number Tandem-Repeat Analysis
Authors: Liu Yang , Ye Xinye , Zhang Hong , Xu Xiaogang , Wang Minggui
Published: May 2012

There was a high percentage of macrolide resistance in
Mycoplasma pneumoniae
clinical isolates in China. The genetic relatedness of macrolide-resistant
M. pneunomiae
strains was investigated using the multilocus variable-number tandem-repeat assay (MLVA). Among 152
M. pneunomiae
isolates, the 137 macrolide-resistant strains were clustered into 15 MLVA types, indicating that the high macrolide resistance rate in
M. pneumoniae
is a result of the dissemination of the multiple resistant clones.
Field Evaluation of a Simple Fluorescence Method for Detection of Viable Mycobacterium tuberculosis in Sputum Specimens during Treatment Follow-Up
Authors: Schramm Birgit , Hewison Cathy , Bonte Laurence , Jones Warren , Camélique Olivier , Ruangweerayut Ronnatrai , Swaddiwudhipong Witaya , Bonnet Maryline
Published: May 2012

Simple tuberculosis (TB) treatment monitoring tools are needed. We assessed the performance of fluorescein-diacetate (FDA) smear microscopy for detection of viable
Mycobacterium tuberculosis
in sputum specimens (
n
= 288) of TB cases under treatment compared to culture (17.4% culture positivity). FDA sensitivity was moderate (83.7% [95% confidence interval {CI}, 70.3 to 92.6]), and specificity was low (66.1% [59.5 to 72.2]). The good negative predictive value (94.8% [90.1 to 97.8]) and negative likelihood ratio (0.2) suggest using this method to rule out treatment failure in settings without access to culture.
Complementation of the Function of Glycoprotein H of Human Herpesvirus 6 Variant A by Glycoprotein H of Variant B in the Virus Life Cycle
Authors: Oyaizu Hiroko , Tang Huamin , Ota Megumi , Takenaka Nobuyuki , Ozono Keiichi , Yamanishi Koichi , Mori Yasuko
Published: May 2012

Human herpesvirus 6 (HHV-6) is a T-cell-tropic betaherpesvirus. HHV-6 can be classified into two variants, HHV-6 variant A (HHV-6A) and HHV-6B, based on genetic, antigenic, and cell tropisms, although the homology of their entire genomic sequences is nearly 90%. The HHV-6A glycoprotein complex gH/gL/gQ1/gQ2 is a viral ligand that binds to the cellular receptor human CD46. Because gH has 94.3% amino acid identity between the variants, here we examined whether gH from one variant could complement its loss in the other. Recently, we successfully reconstituted HHV-6A from its cloned genome in a bacterial artificial chromosome (BAC) (rHHV-6ABAC). Using this system, we constructed HHV-6ABAC DNA containing the HHV-6B gH (BgH) gene instead of the HHV-6A gH (AgH) gene in
Escherichia coli
. Recombinant HHV-6ABAC expressing BgH (rHHV-6ABAC-BgH) was successfully reconstituted. In addition, a monoclonal antibody that blocks HHV-6B but not HHV-6A infection neutralized rHHV-6ABAC-BgH but not rHHV-6ABAC. These results indicate that HHV-6B gH can complement the function of HHV-6A gH in the viral infectious cycle.
Pathogenicity and Mucosal Transmissibility of the R5-Tropic Simian/Human Immunodeficiency Virus SHIV
AD8
in Rhesus Macaques: Implications for Use in Vaccine Studies
Authors: Gautam Rajeev , Nishimura Yoshiaki , Lee Wendy R. , Donau Olivia , Buckler-White Alicia , Shingai Masashi , Sadjadpour Reza , Schmidt Stephen D. , LaBranche Celia C. , Keele Brandon F. , Montefiori David , Mascola John R. , Martin Malcolm A.
Published: May 2012

There is an urgent need to develop new pathogenic R5 simian/human immunodeficiency viruses (SHIVs) for the evaluation of candidate anti-HIV vaccines in nonhuman primates. Here, we characterize swarm SHIV
AD8
stocks, prepared from three infected rhesus macaques with documented immunodeficiency at the time of euthanasia, for their capacity to establish durable infections in macaques following inoculation by the intravenous (i.v.) or intrarectal (i.r.) route. All three viral stocks (SHIV
AD8-CE8J
, SHIV
AD8-CK15
, and SHIV
AD8-CL98
) exhibited robust replication
in vivo
and caused marked depletion of CD4
+
T cells affecting both memory and naïve CD4
+
T lymphocyte subsets following administration by either route. Eleven of 22 macaques inoculated with the new SHIV
AD8
stocks were euthanized with clinical symptoms of immunodeficiency and evidence of opportunistic infections (
Pneumocystis
,
Candida
, and
Mycobacterium
). A single but unique founder virus, also present in the SHIV
AD8-CE8J
swarm stock, was transmitted to two animals following a single i.r. inoculation of approximately 3 50% animal infectious doses, which is close to the threshold required to establish infection in all exposed animals. Because the three new SHIV
AD8
viruses are mucosally transmissible, exhibited tier 2 sensitivity to anti-HIV-1 neutralizing antibodies, deplete CD4
+
T lymphocytes
in vivo
, and induce AIDS in macaques, they are eminently suitable as challenge viruses in vaccine experiments.
Inhibiting Early-Stage Events in HIV-1 Replication by Small-Molecule Targeting of the HIV-1 Capsid
Authors: Kortagere Sandhya , Madani Navid , Mankowski Marie K. , Schön Arne , Zentner Isaac , Swaminathan Gokul , Princiotto Amy , Anthony Kevin , Oza Apara , Sierra Luz-Jeannette , Passic Shendra R. , Wang Xiaozhao , Jones David M. , Stavale Eric , Krebs Fred C. , Martín-García Julio , Freire Ernesto , Ptak Roger G. , Sodroski Joseph , Cocklin Simon , Smith Amos B.
Published: May 2012

The HIV-1 capsid (CA) protein plays essential roles in both early and late stages of virl replication and has emerged as a novel drug target. We report hybrid structure-based virtual screening to identify small molecules with the potential to interact with the N-terminal domain (NTD) of HIV-1 CA and disrupt early, preintegration steps of the HIV-1 replication cycle. The small molecule 4,4′-[dibenzo[
b,d
]furan-2,8-diylbis(5-phenyl-1H-imidazole-4,2-diyl)]dibenzoic acid (CK026), which had anti-HIV-1 activity in single- and multiple-round infections but failed to inhibit viral replication in peripheral blood mononuclear cells (PBMCs), was identified. Three analogues of CK026 with reduced size and better drug-like properties were synthesized and assessed. Compound I-XW-053 (4-(4,5-diphenyl-1H-imidazol-2-yl)benzoic acid) retained all of the antiviral activity of the parental compound and inhibited the replication of a diverse panel of primary HIV-1 isolates in PBMCs, while displaying no appreciable cytotoxicity. This antiviral activity was specific to HIV-1, as I-XW-053 displayed no effect on the replication of SIV or against a panel of nonretroviruses. Direct interaction of I-XW-053 was quantified with wild-type and mutant CA protein using surface plasmon resonance and isothermal titration calorimetry. Mutation of Ile37 and Arg173, which are required for interaction with compound I-XW-053, crippled the virus at an early, preintegration step. Using quantitative PCR, we demonstrated that treatment with I-XW-053 inhibited HIV-1 reverse transcription in multiple cell types, indirectly pointing to dysfunction in the uncoating process. In summary, we have identified a CA-specific compound that targets and inhibits a novel region in the NTD-NTD interface, affects uncoating, and possesses broad-spectrum anti-HIV-1 activity.
What potential research participants want to know about research: a systematic review
Authors: Kirkby Helen Michelle , Calvert Melanie , Draper Heather , Keeley Thomas , Wilson Sue
Published: May 2012

Objective

To establish the empirical evidence base for the information that participants want to know about medical research and to assess how this relates to current guidance from the National Research Ethics Service (NRES).

Data sources

Medline, Web of Science, Applied Social Sciences Index and Abstracts, Sociological abstracts, Health Management Information Consortium, Cochrane Library, thesis index's, grey literature databases, reference and cited article lists, key journals, Google Scholar and correspondence with expert authors.

Study selection

Original research studies published between 1950 and October 2010 that asked potential participants to indicate how much or what types of information they wanted to be told about a research study or asked them to rate the importance of a specific piece of information were included.

Study appraisal and synthesis methods

Studies were appraised based on the generalisability of results to the UK potential research participant population. A metadata analysis using basic thematic analysis was used to split results from papers into themes based on the sections of information that NRES recommends should be included in a participant information sheet.

Results

14 studies were included. Of the 20 pieces of information that NRES recommend should be included in patient information sheets for research pooled proportions could be calculated for seven themes. Results showed that potential participants wanted to be offered information about result dissemination (91% (95% CI 85% to 95%)), investigator conflicts of interest (48% (95% CI 27% to 69%)), the purpose of the study (76% (95% CI 27% to 100%)), voluntariness (39% (95% CI 2% to 100%)), how long the research would last (61% (95% CI 16% to 97%)), potential benefits (57% (95% CI 7% to 98%)) and confidentiality (44% (95% CI 10% to 82%)). The level of detail participants wanted to know was not explored comprehensively in the studies. There was no empirical evidence to support the level of information provision required by participants on the remaining seven items.

Conclusions

There is limited empirical evidence on what potential participants want to know about research. The existing empirical evidence suggests that individuals may have very different needs and a more tailored evidence-based approach may be necessary.
‘Phaco–ECP’: combined endoscopic cyclophotocoagulation and cataract surgery to augment medical control of glaucoma
Authors: Lindfield Dan , Ritchie Robert W , Griffiths Michael FP
Published: May 2012

Objectives

Does phaco–ECP reduce intraocular pressure? Is phaco–ECP safe?

Design

Retrospective case note review of all patients undergoing phaco–ECP between June 2008 and June 2009. All glaucoma subtypes were included.

Setting

Single District General Hospital Ophthalmology Department within the UK.

Participants

58 participants case notes reviewed. Mean age 79.0 years (SD ±9.8).

Interventions

All patients received combined cataract surgery and endoscopic cyclophotocoagulation.

Outcome measures

Follow-up was 1 day, 1 week, 1, 3, 6, 12, 18 and 24 months for intraocular pressure (IOP) measurement. Number of medications, visual acuity and presence of complications were also assessed.

Results

Of the 58 cases performed, 56 case notes (97%) were available for analysis. Mean age 79.0 years (SD ±9.8). Mean pre-procedural IOP was 21.54 mm Hg (95% CI 19.86 to 23.22, n=56). Mean IOP was 14.43 mm Hg (95% CI 13.65 to 15.21, n=53) at 18 months and 14.44 mm Hg (95% CI 13.63 to 15.25, n=41) at 24 months. The mean drop from baseline to 18 and 24 months was 7.1 mm Hg. Statistically significant decrease in IOP was demonstrated at all time points (p<0.001). Mean medication usage was 1.97 agents (95% CI 1.69 to 2.25) at baseline, 1.96 agents (95% CI 1.70 to 2.22) at 18 months and 2.07 agents (95% CI 1.76 to 2.38) at 24 months. No statistically significant change throughout.

Conclusions

This study confirms the safety of phaco–ECP. In this case series, the IOP-lowering effect was significant at all time points; however, the effect of cataract surgery alone was not controlled. A randomised controlled trial is required to draw efficacy conclusions. The authors proposed endoscopic cyclophotocoagulation's main role is to optimise control of low-risk glaucoma of low-risk patients at the time of cataract surgery. However, the authors do not propose that phaco–ECP is a substitute for filtration surgery in high-risk eyes or when low target pressures (<14 mm Hg) are indicated.
Anxiety and depressive disorders are associated with delusional-like experiences: a replication study based on a National Survey of Mental Health and Wellbeing
Authors: Saha Sukanta , Scott James , Varghese Daniel , McGrath John
Published: May 2012

Objectives

There is growing evidence that delusional-like experiences (DLE) are associated with common mental disorders. In particular, a National Mental Health Survey conducted in Australia during 2007 reported an association between DLE and both anxiety disorder and major depressive disorder (MDD). However, the previous study did not examine this association with respect to subtypes of anxiety disorder nor with severity of MDD. The aim of this study was to examine the associations between DLE and both anxiety disorder and MDD in more detail based on an independent population sample.

Design

Cross-sectional study.

Setting

Subjects were drawn from the Australian Survey of Mental Health and Wellbeing 1997 using a stratified multistage area sampling of persons living in private dwellings in all States and Territories of Australia.

Participants

Approximately 13 600 private dwellings were initially selected with one person aged 18 years or older from each dwelling invited to participate. In total, 10 641 individuals participated in the survey.

Primary and secondary outcome measures

The Composite International Diagnostic Interview was used to identify individuals with DLE and Diagnostic and Statistical Manual of Mental Disorder, Fourth Edition (DSM IV) lifetime diagnoses of anxiety disorders and MDD. The influence of various anxiety disorders and MDD on DLE was assessed with logistic regression.

Results

Having a lifetime diagnosis of either any anxiety disorder or MDD was significantly associated with the endorsement of DLE. The association was found for each of the main anxiety disorders when examined separately. There was a dose–response relationship between increasing severity of MDD and higher odds of DLE endorsement.

Conclusions

DLE are associated with a wide range of anxiety disorders and are more prevalent in those with MDD. Understanding the relationship between DLE, anxiety disorders and depression may provide insights into shared pathways that underpin both psychotic disorders and common mental disorders.
Focused sonographic examination of the heart, lungs and deep veins in an unselected population of acute admitted patients with respiratory symptoms: a protocol for a prospective, blinded, randomised controlled trial: Figure 1
Authors: Laursen Christian Borbjerg , Sloth Erik , Lassen Annmarie Touborg , Christensen René dePont , Lambrechtsen Jess , Madsen Poul Henning , Henriksen Daniel Pilsgaard , Davidsen Jesper Rømhild , Rasmussen Finn
Published: May 2012

Introduction

Patients admitted to hospital with acute respiratory symptoms remain a diagnostic challenge for the emergency physician. The use of focused sonography may improve the initial diagnostics, as most of the diseases, commonly seen and misdiagnosed in patients with acute respiratory symptoms, can be diagnosed with sonography. The protocol describes a prospective, blinded, randomised controlled trial that aims to assess the diagnostic impact of a pragmatic implementation of focused sonography of the heart, lungs and deep veins as a diagnostic modality in acute admitted patients with respiratory symptoms.

Methods and analysis

The primary outcome of the study is the number of patients with a correct presumptive diagnosis within 4 h of admission to the emergency department. The patient is randomised to either an intervention or a control group. In the intervention group, the usual initial diagnostic work up is supplemented by focused sonographic examination of the heart, lungs and deep veins of the legs. In the control group, usual diagnostic work up is performed. The χ2test, alternatively the Fischer exact test will be used, to establish whether there is a difference in the distribution of the total number of patients with a correct/incorrect ‘4 h’ presumptive diagnosis in the control group and in the intervention group.

Ethics and dissemination

This clinical trial is performed according to the Declaration of Helsinki and has been approved by the Regional Scientific Ethical Committee for Southern Denmark and the Danish Data Protection Agency. The results of the trial will be published according to the CONSORT statement with the extension for pragmatic trials. The results of the trial will be published in a peer-reviewed scientific journal regardless of the outcome.

Trial registration number

This study is registered athttp://clinicaltrials.gov, registration numberNCT01486394.
‘They patiently heard what we had to say…this felt different to me’: the palliative care needs and care experiences of advanced cancer patients and their families in Bangladesh
Authors: Dehghan Rogieh , Ramakrishnan Jairam , Uddin-Ahmed Nezzan , Harding Richard
Published: May 2012

Background

In 2008, 70% of cancer deaths occurred in low- and middle-income countries. This study aimed to describe the needs and experiences of patients and families who received palliative care in Bangladesh, and those of the providing clinicians, in order to inform fledgling service development.

Methods

Patients, family members and specialist palliative care physicians (n=20) participated in a cross-sectional semistructured qualitative study. Following peer review of coding units, relational codes were established and a resulting frame constructed.

Results

The data fit well within the existing domains of palliative care, as respondents described the family-wide distress and impact of the disease, psychological, physical and social problems. However, the contextual experience of cancer in this setting revealed particular challenges, as respondents described anger, helplessness and mistrust towards existing (non-palliative) healthcare. Poor patient–doctor communication and unmet need for information contributed greatly to these poor experiences. By contrast, experience of palliative care was explained in radically different terms, with a clear shift in the nature of the interaction and resulting care, to bring effective communication and relief from suffering.

Conclusion

To alleviate the distress to cancer patients and their families, it is essential for oncologists to receive adequate training in palliative care, especially in communication, holistic assessment and information giving. To meet the massive challenge in a country like Bangladesh, palliative care should be mainstreamed into the existing healthcare system for a feasible and sustainable public health approach.
Advanced care planning for people with intellectual and developmental disabilities
Authors: A. Savage T. , Moro T. , Boyden J. , Brown A. , Kavanaugh K.
Published: May 2012

Over 4 million people in the U.S. have an intellectual or developmental disability (I/DD). While most people with I/DD have an equivalent life expectancy to that of the general population they experience numerous barriers to quality health care at the end of life. End-of-life care, including advanced care planning, is not well understood for individuals with I/DD. In order to elucidate end-of-life care for people with I/DD, a qualitative, exploratory approach was used to collect focus group and individual interview data from individuals with I/DD and their family and staff caregivers. Participants were recruited from four community agencies. While people with I/DD were able to discuss their experiences when they lost someone close to them, it proved challenging to describe concrete issues such as advanced care planning and medical care at the end of life. The family members' and staff vividly recalled their experiences when their loved one was at the end of life. The quality of care received was variable. Some participants described compassionate care, while others perceived a poor quality of care. In general, it was reported that individuals with I/DD were not involved in advanced care planning and rarely had formal plans in place. The aim of this paper is to present end-of-life care for people with I/DD as perceived by their family and staff caregivers and to discuss the barriers to end-of-life care and advanced care planning for people with I/DD. Recommendations for including people with I/DD in their end of life care will be discussed.
Injecting social technology into advance care planning
Authors: Kraft J
Published: May 2012

Communication and conversation among an individual, loved ones and a health care provider are essential to effective advance care planning (ACP). The most common approach to ACP currently anchors to rigid paper forms. However, Web-based educational and assistance tools are being developed to help an individual successfully engage in ACP.

Web-based social technology (eg, Twitter, Facebook, LinkedIn, Google+) currently enables groups of people to communicate efficiently with members and transfer, store, maintain and update various forms of information (eg, text, audio, pictures, video). Consequently, new social technology is now being developed for ACP to leverage these innovative communication tools.

Social technology for ACP works by connecting together networks of individuals to easily share and access text, audio and video wishes. People generally have difficulty initiating ACP conversations, and social technology can have a normalising effect that stimulates ACP conversations by creating a common place to engage in ACP. Once a conversation is initiated, ACP social technology provides dynamic Web-based tools for recording, sharing and maintaining wishes over a lifetime. In emergencies, health professionals can immediately gain access to wishes made available by the patient.

Current foreseen limitations will diminish over time. The elderly will become increasingly computer and Internet savvy, and younger generations are becoming more aware of ACP. If multiple ACP social technology platforms become widely used, cross-communication among various platforms is possible.

As the world's population ages and exponential growth of technology continues, innovations like social technology can help people more effectively engage in ACP communication.
Integrating palliative care and end of life care concepts for surgical ICU patients and staff
Authors: Browning Melissa , Wright Benson , Kleinpell Ruth
Published: May 2012

Integrating palliative care and end of life care principles can be challenging in a surgical ICU setting as traditional goals of care for surgical patients are focused on promoting recovery. Because of this, the staff in the SICU formed a palliative care committee and a series of initiatives were implemented to promote education and awareness of palliative care and end of life care issues, as well as identify triggers for palliative care consultations, as a part of the post surgical care for patients with complex conditions. These interventions included establishing a palliative care journal club which was held monthly and reviewed topics ranging from the family or surgeon perspective of end of life care or how to approach surgeons to discuss palliative care, participation in Schwartz Grand Rounds that promoted a discussion on complicated length of stays for transplant patients, and development of a weekly family support group.

Pre-intervention surveys were completed on nursing staff attitudes and knowledge of palliative and end of life care. Results showed that 77% of nurses did not have palliative care education and 57% said no or didn't know if palliative care was compatible with aggressive care. Post-implementation surveys will be conducted in spring 2012. This presentation will further describe the initiatives that proved beneficial in engaging ICU nurses in discussion and learning of palliative care and end of life care concepts. Strategies that were used to promote education for clinical nurses and the results of post implementation benefit assessments will be highlighted.
Increasing all staff awareness and skills to promote the conversation: a multi-staff, regional education approach
Authors: Matthiesen M , Wrigley K
Published: May 2012

As part of the National End of Life Strategy recommendations and the Northwest Evaluation of Dying Matters Week 2010, Greater Manchester Cheshire Cancer Network aimed to provide enhanced communication skills training to all staff to achieve the following aims:

Engaging both public and professionals in end of life conversations/advance care planning.

Forging community alliances around end of life conversations and care.

GMCCN and the Conversations for Life programme delivered a nationally endorsed approach to assist staff in overcoming the fear of starting these conversations with patients/clients in order to support patient-centred care. “Local champions' were identified to recruit staff and a series of staff development days were held and evaluated across the region. Multi-service staff attended each session, providing greater awareness of the need and benefits of early conversations, multi-disciplinary team communication and enhanced patient-centred planning. Enhanced staff attitudes and approaches were found to support local strategies around end of life, palliative care and care-pathway interventions in various settings: community, care home, acute trust and those working in long-term conditions. Outcomes and evaluations to date from more than 143 participating staff and commissioners will be shared.
A survey of advance care planning in care homes following the GSF care homes training
Authors: Stobbart-Rowlands Margaret , Thomas Keri , Giles Lucy
Published: May 2012

Advance Care Planning has been introduced as an integral part of The Gold Standards Framework (GSF) Care Homes Training Programme in end of life care to over 2000 care homes in the UK over the last 7 years. The standard for GSF accreditation that they have to attain is that “every resident is offered an ACP discussion”. The GSFCH training programme is a comprehensive phased programme which includes many aspects of end of life care, with over 2000 trained care homes and 300 care homes having attained full accreditation. A feedback survey of accredited homes was undertaken in 2010 and showed:-

▶

An increase from minimal use of ACP in care homes to over 90% residents included.

▶

Advance Care Planning contributed to an increase in home deaths from 68% to 98%

▶

Improved communication skills, and contributed to a culture of openness and realisation.

Overall, there was very positive feedback as to the value of ACP and few reported difficulties. This has contributed to overall improvements in care and a reduction in inappropriate hospital admissions.

Prior to The GSFCH Training Programmes, Advance Care Planning in Care Homes was not widespread; it has helped to empower both residents and staff.
Advance care planning supported by clinicians trained for end-of-life care in Japanese nursing homes
Authors: Nishikawa M , Yokoe Y , Miura H , Hong Y , Yoshida Y , Shibasaki M , Takamichi K , Okumura N , Endo H , Nakashima K
Published: May 2012

In Japan, which has the highest rate of aging worldwide, the study of advance care planning (ACP) in nursing homes has only just begun.

The aim of this study was to evaluate the utility of three clinical strategies on nursing home ACP, supported by trained ACP clinicians.

The optimised strategy was to determine a policy on nursing home ACP, involving 1 doctor, 2 nurses, 1 social worker, and 1 facility director. The policy allowed residents and their families to opt out of undesired medical procedures.

The proactive strategy was to conduct a lecture on ACP, involving 51 of 109 nursing home residents' families. We investigated the families' preferences regarding care of their dying relative in the nursing home before and after the lecture, even when death certificates were not promptly issued because many Japanese nursing homes have no full-time doctors.

The reactive strategy was to perform a multi-occupational interview on ACP. Two nurses selected families of 21 frail residents with deteriorating physical conditions.

The primary end-point was the number of residents who died in the nursing home in accordance with their wishes.

The lecture significantly increased the number of families choosing terminal care in the nursing home (p <0.01). Intervention by these three strategies significantly increased the number of residents dying in the nursing home in accordance with their wishes (p <0.01).

Intervention by these three strategies is useful and this presentation will demonstrate to other Japanese health professionals the technique of performing ACP in Japanese nursing homes.
Why isn't organ donation part of advance care planning?
Authors: Saul P
Published: May 2012

Organ and tissue donation preferences are not part of advance care planning (ACP) documents in Australia, either at state or national level. This includes advance directives, powers of attorney and advance resuscitation plans (such as POLST). Paradoxically, the only common advance directive in Australia is about organ donation, as this appears on 5 million driver's licenses in NSW, and 1.5 million entries on the National Organ Donor Registry. Advance care planning for the end of life and expressing a preference about organ and tissue donation have proceeded on entirely separate paths in Australia. This appears to be the same in the US. Why are preferences for organ and tissue donation kept separate from other advance decisions? Options include:

▶

That potential donors are a different population

▶

ACP is not wholly about end of life

▶

ACP does not address post death wishes

▶

There may be a perception of conflict of interest

This paper critiques these differences, suggesting that commonalities are widespread.

Given that organ and tissue donation receives 100 times the funding of ACP in Australia, there are strong motives for pursuing some linkage. A group has been established by the NSW ministry of Health to find common ground. This paper reports the findings of this group, including a suggestion that ACP documents all carry a clear message: “This Directive does not include your preferences about organ and tissue donation. To find out more about this, please go to the following website…”
Challenge of introducing advance care planning policy into Japan
Authors: Miura H , Nishikawa M , Hong YJ , Nakashima K
Published: May 2012

In Japan, living wills and advance directives are not commonly used, and there is no system or law to support the decision making of patients. Furthermore, there is no available law about the withdrawal of life-sustaining treatments or appointment of a medical attorney. Thus, medical staff must deal with ethical dilemmas related to medical decision making in end-stage disease.

To introduce advance care planning policy into Japan, in consideration for law and ethic related to domestic end-of-life care, we compared law and ethic of Victoria, Australia with Japan. In Victoria, patient's decision and attorney's power are privileged by Medical Treatment Act, Guardianship and Administration Board Act and ACP guideline. Whereas, in Japan, there are general guideline for end-of-life care and one of common law, but no law and guideline to mention concrete procedure. In this situation, the withdrawal of respirator and tube feeding are practically prohibited in Japan. However, in healthcare setting, the confirmation of patient family's wish for CPR has been usually performed, and the withholding of life-sustaining treatments has been relatively permitted.

We now try to introduce ACP policy into Japan as a stepwise manner; for example we made some formats restricted to the withholding of life-sustaining treatments, and algorithm using ACP considering Japanese orthodox culture.

Via these activities, we want to help the globalisation of law and ethic in Japanese end-of-life care.
To encourage uptake of ACP in the community with the RCGP EOLC patient charter
Authors: Thomas Keri
Published: May 2012

Improving the uptake of Advance Care Planning in the community is highly recommended, but difficult in practice. Empowering people nearing the end-of-life and their families to express their needs and wishes leading to delivery of care in alignment with these preferences is still inadequate. The RCGP RCN End of Life Care Patient Charter is a means to encourage this in practice.

The UK RCGP EOLC Strategy developed in 08, and led to the RCGP EOLC Patient Charter, with seven key elements important to patients and their families. The draft was developed with the Patient Partnership Group, GPs and Nurses, with wide consultation and approved by the RCGP Board and sent to every GP Practice. It aims to describe the kind of best practice that patients seek to receive from their Primary Care team and affirms the importance of listening and holding ACP discussions. The first four of the seven statements all relate to requests to be listened to, receive information and regular communication and lead naturally on to ACP discussions.

All GP practices in the UK maintain a Palliative Care/GSF Register of patients thought to be in the final months of life and it is recommended good practice that each of these patients be offered and ACP discussion. The Patient Charter is used in various ways e.g. given to patients on the register, displayed in waiting rooms etc.,

An adaptation was made for residents in care homes and is to be used as a template for commissioning care.
Advance care planning decision aid improves clinician understanding of wishes of patients with ALS
Authors: Levi BH , Brothers A , Whitehead M , Simmons Z , Farace E , Schubart J , Lehmann E , Green MJ
Published: May 2012

This study examined whether a computer-based decision aid for advance care planning (ACP) could help improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and the clinicians who treat them. Prior to patients with ALS engaging in ACP using the decision aid (and completing pre-/post-questionnaires), the ALS clinic team was surveyed about patient wishes for end-of-life care for 3 hypothetical vignettes (12 treatment decisions total). The clinic team was then re-surveyed 3 months after patients had used the decision aid. These responses were then compared with patient responses to the vignettes, and a concordance score calculated for the agreement between patients and the clinic team. For the 44 participants (66% male, 73% married), concordance between patient wishes and the clinic team decisions was significantly higher post-intervention (pre: M=54%, SD=34.3 → post: M=93.2%, SD=10.3; p <.001). Additionally, patients reported high satisfaction with their decisions about end-of-life care (M=26.4, SD = 3.2; 6= lowest satisfaction, 30=highest), low decisional conflict (M=28.8/80, SD = 8.2), and high satisfaction with the decision aid (M=52.7/60, SD=5.7). Further, patient knowledge regarding ACP increased post-intervention (pre: 47.8% correct responses → post: 66.2%; p <.001) without any adverse effect on patient anxiety or sense of self-determination. These findings suggest that a computer-based decision aid for ACP is well accepted by patients with ALS and that its use can significantly improve clinicians' understanding of patient wishes regarding end-of-life medical care, as well as increase patient knowledge regarding ACP.
Using video in advance care planning for progressive pancreas and hepatobiliary cancer patients
Authors: Epstein A.S. , Volandes A.E. , O'Reilly E.M.
Published: May 2012

Cardiopulmonary resuscitation (CPR) is an important advance directive (AD) topic in patients with progressive cancer; however such discussions are challenging. Whether video educational information about CPR engenders broader advance care planning (ACP) discourse is unknown. We studied patients with progressive pancreas or hepatobiliary cancer by randomising them to an educational CPR video or narrative. The primary endpoint was differences in ACP documentation 1 month post-test between randomisation arms. Secondary endpoints included impressions of the study information; and, pre- and post-intervention knowledge of and preferences for CPR and mechanical ventilation (MV). Fifty-six subjects were consented and analysed. ACP documentation (either a formal AD or a documented discussion about patient wishes) within 1 month post-test was not significantly higher (OR = 3.583 [95% CI: 0.886 – 17.937], p = 0.074) in the video arm (12/30, 40.0%) than in the narrative arm (4/26, 15.4%). Knowledge increased in both arms after the intervention (p < 0.001; 95% CI: 1.173 – 2.069 for video and p < 0.001; 95% CI: 0.854 – 1.946 for narrative). Preferences regarding CPR changed in the video arm (χ2= 5.143, p = 0.023) but not in the narrative arm. Preferences regarding MV did not change in either arm. The majority of subjects in both arms reported the information as helpful, comfortable to discuss, and recommended to others. We conclude that video educational information about CPR only results in a trend towards more ACP documentation in these patients. Future studies investigating this trend and other applications of video education are needed and ongoing.
Disability Perspectives on Public Policy in Advance Care Planning
Authors: Coleman D
Published: May 2012

Many disabled people have had health care providers suggest and even urge that they forego life-sustaining treatment. Terrie Lincoln's story (seehttp://stories-2.com/HowWeDie/story?sid=4) describes her medical encounters following her spinal cord injury at age nineteen. She was initially unconscious and needed a ventilator for about five months. Doctors repeatedly urged first her parents and then herself to “pull the plug” because her quality of life would be unbearable. She and her parents resisted fifteen years ago, and she went on to complete college, work a full time job and begin raising a baby daughter.

At least four concerns should be discussed:

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A recent study shows that having an advance directive makes it less likely that a person will get medical treatments they actually want.

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Futile care policies and laws allow physicians to withhold treatment that they feel is inappropriate, even if they are overruling the individual, surrogate or advance directive.

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Studies show that elder abuse is a significant problem. The perpetrator is often the spouse or adult child, yet these are the first priority surrogate decision makers designated by statute, without protections to prevent an abuser from making health care decisions that are best for them, not the patient.

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A leading neurologist recently admitted in a New York Times interview that it is “not uncommon” for physicians to ignore the appropriate “wait-and-see” period following a brain injury and urge families to withhold life-sustaining treatment.

The disability community is concerned that, increasingly, people like Terrie are not surviving.
Using mandatory national safety and quality standards to embed advance care planning in practice
Authors: Dunbar N , Hill J
Published: May 2012

Programs such as Respecting Choices® in the United States and Respecting Patient Choices® in Australia have been developed to address the need for improved advance care planning. Numerous guidelines, policies and pieces of legislation exist to provide guidance on requirements for developing and documenting advance care plans. However the problem of sub-optimal advance care planning persists. A multifactoral approach is needed to address this problem. Within such an approach there may be benefits in looking at the role accreditation can play in driving improvements in advance care planning. Accreditation is part of a comprehensive system to support safe and high quality care. It can verify that actions are being taken, that system data and information are being used to identify problems and develop solutions and that improvements are being achieved. Accreditation processes have been widespread for many years, but have generally not included a requirement to have advance care planning systems in place. In Australia, requirements to have systems for preparing and receiving advance care plans, and for documenting them in the clinical record, are included in new mandatory accreditation standards. These National Safety and Quality Health Service Standards provide explicit statements of the expected level of safety and quality of care to be delivered to patients. Hospitals will need to be assessed against these standards from January 2013. This innovative strategy of using mandatory accreditation standards – targeted at a high level – complements more detailed policy and educational programs that already exist. Such an approach will support the implementation of advance care planning programs.
The development of statutory law in South Australia to support advance care planning
Authors: Hunt R
Published: May 2012

The practice of advance care planning is influenced by the relevant legislative framework. This paper describes the development of statutory law in South Australia to support palliative care and advance care planning. The presenter, a palliative medicine specialist, provides personal anecdotes about the reasons for this law reform. As with many jurisdictions, legislative evolution involved a Natural Death Act 1983. However, ongoing deficiencies in end of life care arrangements led to the formation of a Parliamentary Select Committee. This in turn led to the Consent to Medical Treatment and Palliative Care Act 1995. This Act made provision for written directions about care and the appointment of surrogates to make medical decisions. Written directions are limited to the terminal phase of illness, while surrogates cannot refuse the natural provision of food and fluid, medication for the relief of suffering at the end of life, or treatment that would render the patient capable of making their own decisions. This Act, the first to have ‘Palliative Care’ in its title, protects clinicians from civil or criminal liability for administering medical treatment with the intention of relieving pain or distress, ‘even though an incidental effect of treatment is to hasten the death of the patient.’ The implications of this legislation for advance care planning and clinical practice will be discussed. Evidence about the documentation of different types of advance care plans in SA will be presented.