Defining consensus norms for palliative care of people with intellectual disabilities in Europe using Delphi methods: A White Paper from the European Association of Palliative care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their
palliative care needs.
Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe.
Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus
were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for
Palliative Care reviewed and approved the final version.
Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks.
Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training
and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted.
Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

Reasons for non-participation in the Northern Ireland Bowel Cancer Screening Programme: a qualitative study

OBJECTIVES: To identify the reasons why some people do not participate in bowel cancer screening so that steps can be taken to improve informed decision-making.

DESIGN: Qualitative study, using focus groups with thematic analysis of data to identify, analyse and report patterns. Transcripts were repeatedly read and inductively coded using a phenomenological perspective, and organised into key themes.

SETTING: Belfast and Armagh, two areas of Northern Ireland with relatively low uptake of bowel cancer screening.

PARTICIPANTS: Ten women and 18 men in three single-gender focus groups (two male and one female), each with 9-10 participants. Study participants were recruited by convenience sampling from the general public and were eligible for, but had not taken part in, the Northern Ireland Bowel Cancer Screening Programme.

RESULTS: Key themes identified were fear of cancer; the test procedure; social norms; past experience of cancer and screening; lack of knowledge or understanding about bowel cancer screening; and resulting behaviour towards the test. Fear about receiving bad news and reluctance to conduct the test themselves were reactions that participants seemed willing to overcome after taking part in open discussion about the test.

CONCLUSIONS: We identified barriers to participation in bowel cancer screening and used these insights to develop new materials to support delivery of the programme. Some of the issues raised have been identified in other UK settings, suggesting that knowledge about barriers, and strategies to improve uptake, may be generalisable.

Abnormal anti-Stokes Raman scattering of carbon nanotubes

Abnormal anti-Stokes Raman scattering (AASR) was unambiguously observed in carbon nanotubes (CNT's). In contrast to traditional Raman scattering theory, the absolute value of the Raman frequency of the anti-Stokes peak is not the same as that of the corresponding Stokes peak. It was demonstrated that AASR scattering originates from the unique nanoscale cylindrical structure of CNT's that can be considered naturally as a graphite structure with an intrinsic defect from its rolling. The double-resonance Raman scattering theory was applied to interpret the scattering mechanism of the AASR phenomenon successfully and quantitatively.

Improving a regional chemotherapy service by learning from deaths occurring within 30 days of treatment with systemic anti-cancer therapy.

Background: Outwith clinical trials, patient outcomes specifically related to SACT (systemic anti-cancer therapy) are not well reported despite a significant proportion of patients receiving active treatment at the end of life. The NCEPOD reviewing deaths within 30 days of SACT found SACT caused or hastened death in 27% of cases.

Method: Across the Northern Ireland cancer network, 95 patients who died within 30 days of SACT for solid tumours were discussed at the Morbidity and Mortality monthly meeting during 2013. Using a structured template, each case was independently reviewed, with particular focus on whether SACT caused or hastened death.

Results: Lung, GI and breast cancers were the most common sites. Performance status was recorded in 92% at time of final SACT cycle (ECOG PS 0-2 89%).

In 57% the cause of death was progressive disease. Other causes included thromboembolism (13%) and infection (5% neutropenic sepsis, 6% non-neutropenic sepsis). In 26% with death from progressive disease, the patient was first cycle of first line treatment for metastatic disease. In the majority discussion regarding treatment aims and risks was documented. Only one patient was receiving SACT with curative intent, who died from appropriately managed neutropenic sepsis.

A definitive decision regarding SACT's role in death was made in 60%: in 49% SACT was deemed non-contributory and in 11% SACT was deemed the cause of death. In 40% SACT did not play a major role, but a definitive negative association could not be made.

Conclusion: Development of a robust review process of 30-day mortality after SACT established a benchmark for SACT delivery for future comparisons and identified areas for SACT service organisation improvement. Moreover it encourages individual practice reflection and highlights the importance of balancing patients' needs and concerns with realistic outcomes and risks, particularly in heavily pre-treated patients or those of poor performance status.

The role of societal norms in portion size related behaviour in Denmark and on the Island of Ireland

Purpose:
Social norms influence eating behavior, but little is known about their role in portion size-related behavior. This study
explored the role of social eating norms in Denmark (DK) and the Island of Ireland (IOI) in relation to portion size-related
behavior.

Methods:
In a survey DK (n=1063) and IOI (n=1012) respondents rated social eating norms (11 items) and portion size-related behavior
(3 items) on a 7-point scale (1=strongly disagree to 7=strongly agree). The 3 items relate to: 1) anticipating how
much will be eaten at the beginning of a meal, 2) clearing the plate, and 3) clearing the plate even when full. Sociodemographics
and eating attitudes (e.g. cognitive restraint) were measured as background variables

Results:
Two social eating factors were identified: The ‘limit intake’ norm (6 items) and the ‘plate cleaning’ norm (3 items). The
DK participants reported stronger ‘limit intake’ norms and weaker ‘plate cleaning’ norms than IOI. In both countries
females reported stronger ‘limit intake’ norms while males reported stronger ‘plate cleaning’ norms. In DK, age was
positively correlated with both social eating norm factors. The ‘limit intake’ norm had stronger association with anticipating
how much will be eaten at the beginning of a meal, but the ‘plate cleaning’ norm had stronger association with
clearing the plate. Only the ‘plate cleaning’ norm was associated with clearing the plate even when full.

Conclusions:
The social eating norms vary significantly between countries and genders. The ‘limit intake’ and ‘plate cleaning’ norms
play a role in consumers’ reported portion size-related behavior.

Failure to produce an anti-poverty strategy: The Committee on the Administration’s Application [2015] NIQB 59, June 30, 2015

This is a note on the Northern Ireland High Court decision of 30 June 2015 that the Northern Ireland Executive had acted unlawfully in failing to fulfil its statutory duty to adopt a strategy setting out proposals for tackling poverty, social exclusion and patterns of deprivation based on objective need.

Development and Validation of a Procedure for Numerical Vibration Analysis of an Oscillating Wave Surge Converter

During extreme sea states so called impact events can be observed on the wave energy converter Oyster. In small scale experimental tests these impact events cause high frequency signals in the measured load which decrease confidence in the data obtained. These loads depend on the structural dynamics of the model. Amplification of the loads can occur and is transferred through the structure from the point of impact to the load cell located in the foundation. Since the determination of design data and load cases for Wave Energy Converters originate from scale experiments, this lack of confidence has a direct effect on the development.

Numerical vibration analysis is a valuable tool in the research of the structural load response of Oyster to impact events, but must take into account the effect of the surrounding water. This can be done efficiently by adding an added mass distribution, computed with a linearised potential boundary element method. This paper presents the development and validation of a numerical procedure, which couples the OpenSource boundary element code NEMOH with the Finite Element Analysis tool CodeAster. Numerical results of the natural frequencies and mode shapes of the structure under the influence of added mass due to specific structural modes are compared with experimental results.

Utility of US Norms for the Bayley Scales of Infant Development (III) in UK and Irish Children

The aim of this paper is to explore the utility of the United States norms for United Kingdom and Republic of Ireland populations. The Bayley Scales of Infant Development (BSID III) is a globally used developmental assessment for typically developing and clinical samples of children aged 1 to 42 months. A UK norming exercise (REF) confirmed the suitability of US norms for UK based research and practice. However, debate has continued concerning the utility of the US norms in other countries. This paper further explores the utility of the US norms for the UK and ROI populations using BSID III developmental outcome data from two samples of over one thousand typically developing children.

Nonsteroidal Anti-Inflammatory Drug Use is Not Associated With Reduced Risk of Barrett’s Esophagus

OBJECTIVES: Regular use of nonsteroidal anti-inflammatory drugs (NSAIDs) is associated with a reduced risk of esophageal adenocarcinoma. Epidemiological studies examining the association between NSAID use and the risk of the precursor lesion, Barrett’s esophagus, have been inconclusive.

METHODS: We analyzed pooled individual-level participant data from six case-control studies of Barrett’s esophagus in the Barrett’s and Esophageal Adenocarcinoma Consortium (BEACON). We compared medication use from 1474 patients with Barrett’s esophagus separately with two control groups: 2256 population-based controls and 2018 gastroesophageal reflux disease (GERD) controls. Study-specific odds ratios (OR) and 95% confidence intervals (CI) were estimated using multivariable logistic regression models and were combined using a random effects meta-analytic model.

RESULTS: Regular (at least once weekly) use of any NSAIDs was not associated with the risk of Barrett’s esophagus (vs. population-based controls, adjusted OR = 1.00, 95% CI = 0.76–1.32; I2=61%; vs. GERD controls, adjusted OR = 0.99, 95% CI = 0.82–1.19; I2=19%). Similar null findings were observed among individuals who took aspirin or non-aspirin NSAIDs. We also found no association with highest levels of frequency (at least daily use) and duration (≥5 years) of NSAID use. There was evidence of moderate between-study heterogeneity; however, associations with NSAID use remained non-significant in “leave-one-out” sensitivity analyses.

CONCLUSIONS: Use of NSAIDs was not associated with the risk of Barrett’s esophagus. The previously reported inverse association between NSAID use and esophageal adenocarcinoma may be through reducing the risk of neoplastic progression in patients with Barrett’s esophagus.

Revisiting intersectionality for EU Anti-Discrimination Law in an economic crisis –a critical legal studies perspective

This article discusses the role of EU anti-discrimination law in challenging EU anti-crisis measures from a critical legal studies perspective. Critical legal scholarship is defined through its challenge of ‘lex’ through the vision of ‘ius’ and its critical links with social movements. EU anti-discrimination law attracts critique for constituting a compartmentalised socio-legal field, which prevents justice for those at intersections of inequalities. By defining as the aim of anti-discrimination law the combat of disadvantage resulting from ascribed otherness around the nodes sex/gender, race/ethnicity, and disability, the article suggests a convincing normative vision suitable to de-compartmentalise the field and adequately address intersectionality. This critical legal perspective on intersectionality differs from its sociological counterparts by omitting class as a category. The article demonstrates that this distinction is necessary for EU anti-discrimination law to maintain its critical edge.

A multi-attribute ranking solutions confirmation procedure

Ranking problems arise from the knowledge of several binary relations defined on a set of alternatives, which we intend to rank. In a previous work, the authors introduced a tool to confirm the solutions of multi-attribute ranking problems as linear extensions of a weighted sum of preference relations. An extension of this technique allows the recognition of critical preference pairs of alternatives, which are often caused by inconsistencies. Herein, a confirmation procedure is introduced and applied to confirm the results obtained by a multi-attribute decision methodology on a tender for the supply of buses to the Porto Public Transport Operator. © 2005 Springer Science + Business Media, Inc.

Synthesis and biological activities of polyphenolic hybrids - evaluation of anti-cancer, anti-inflammatory and antioxidant activities

Os compostos polifenólicos constituem uma classe de metabolitos secundários de plantas, mas existe também uma enorme quantidade de derivados sintéticos ou semi-sintéticos contendo múltiplas unidades fenólicas. Estes compostos apresentam importantes características biológicas, que dependem das suas estruturas básicas. Certos derivados desta família de compostos, tais como flavonoides, cromonas e cumarinas contribuem para os benefícios da dieta humana, e partilham o núcleo de benzopiran-(2 e 4)-ona ou benzofuran-3-ona. A presente dissertação inclui uma introdução geral e três capítulos que descrevem as novas rotas sintéticas estabelecidas para a preparação de novos híbridos de diversos compostos polifenólicos, assim como a sua elucidação estrutural e termina com a presentação dos resultados da avaliação biológica desses mesmos compostos. No segundo capítulo discute-se a preparação de híbridos de pirimidina- e imidazolidina-polifenóis, especialmente a síntese diastereoseletiva de novos híbridos benzofuran-3-ona-hidantoína e derivados de uracilo. A rota sintética envolve a ação de carbodiimidas sobre os ácidos cromona-(2- e 3)-carboxílicos num só passo ou em dois passos sequenciais, catalisada por uma base orgânica ou inorgânica. O terceiro capítulo descreve reações do tipo adições conjugadas 1,4 - hetero-ciclisações em cascata de compostos 1,3-dicarbonílicos em ácido cromona-3-carboxílico catalisadas por uma base orgânica, que originaram novas cromonas, cromanonas e flavonas polissubstituídas. As bispiranonas [bispiran-2 e 4)-onas] foram elaboradas numa reacção de acoplamento da 4-hidroxicumarina ou da lactona do ácido triacético com o ácido cromona-3-carboxílico ou precursores formil-funcionalizados (ω-formil-2’-hydroxy acetofenonas e cromona-3-carbaldeídos) utilizando organocatálise básica. Finalmente, alargou-se o estudo das adições conjugadas 1,4 para uma variedade de 4-hidroxipiran-2-onas e cetonas α,β-insaturadas para originar novos análogos de warfarina. Obteve-se uma variedade de estruturas complexas por hibridação das unidades de 4-hidroxicumarina ou da lactona do ácido triacético com os novos derivados de cromonas polissubstituídas. Todos as reações foram executadas em condições suaves e ambientalmente favoráveis, utilizando a 4-pirrolidinopiridina como organocatalisador básico. As estruturas dos novos híbridos polifenólicos foram caracterizados por técnicas espectroscópicas de alta resolução, incluindo espectroscopia de ressonância magnética nuclear (1D e 2D) e por difractometria de raios-X, que nos permitiram resolver o complexidade estrutural dos compostos sintetizados. O quarto capítulo apresenta os resultados da avaliação biológica obtidos com os híbridos polifenólicos sintetizados neste trabalho, mostrando a possibilidade de seu envolvimento na terapia do cancro. A maioria dos compostos foram avaliados quanto ao seu efeito sobre a citotoxicidade e proliferação de células leucémicas e ao seu envolvimento na regulação de via pró-inflamatória NF-kB, na qual, os híbridos de biscumarinas exibiram actividades elevadas (IC50 = 6-19 μM para inibição de NF-kB depois de 8 horas de incubação e IC50 = 15-39 μM para efeitos citotóxicos em células cancerosas, após 24 horas de incubação). Uma inibição moderada das enzimas HDAC e Cdc25 foi induzida pelos derivados de benzofuran-3-ona-hidantoína. Catorze dos novos derivados polifenólicos polissubstituídos, tendo como estrutura básica a benzopiran-4-ona, foram avaliados pela sua actividade quimiopreventiva do cancro mediada pela indução de sinalização citoprotectora Nrf2 (fator 2 relacionado com o fator nuclear da proteína E2) e capacidade para inibir a proliferação das células de cancro da mama. Os derivados da classe das cromanonas foram identificados como os indutores mais potentes da actividade Nrf2. As concentrações necessárias para aumentar a actividade de luciferase em 10 vezes (C10) foram de 2,8-21,3 μM. Todos os novos híbridos polifenólicos que apresentam atividade citotóxica e anti-proliferativa não afectam o crescimento de células saudáveis periféricas do sangue (PBMC) (IC50 > 50 μM), indicando a sua seletividade para as células cancerosas e sugerindo que alguns deles são estruturalmente interessantes para posteriores análises. A avaliação da atividade antioxidante utilizando os testes do radical livre DPPH e o poder redutor do ião férrico FRAP foram realizados em algumas estruturas híbridas polifenólicas.