Processus de construction de nouvelles identités genrées dans la tradition wicca à Québec

Nous assistons depuis quelques années à un regain d'intérêt pour le monde de la sorcellerie au sein des sociétés occidentales. Séries télévisées, films, articles de presse sont tous là pour reprendre l'image de la sorcière dans un nouveau contexte historique. Or, très peu connaissent la réalité des identités issues des communautés païennes et néopaïennes, telles que celles liées à la wicca, une tradition magico-religieuse qui présente une cosmologie singulière où s'ancrent les relations entretenues entre l'identité de genre des pratiquants et leurs pratiques rituelles et magiques. Dans une perspective anthropologique, ce mémoire propose d'explorer la construction et l'expression d'une identité wiccane et genrée à Québec, à travers les rites publics et la vie quotidienne wiccans. Il s'agit de poser un regard critique sur la manière d'appréhender la multiplicité des identités genrées aujourd'hui au sein de la wicca. Cette ethnographie vise à explorer les changements survenus dans la religiosité wicca avec l'affirmation de communautés présentant une vision autre de l'identité genrée hétéronormative.We have witnessed in recent years a renewed interest in the world of witchcraft in Western societies. TV series, films, press articles are all there to take on the image of the witch in a new historical context. However, very few know the reality of identities from pagan and neopagan communities, such as those linked to Wicca, a magico-religious tradition which presents a singular cosmology that provides meaning to the relationships between the gender identity of practitioners and their ritual and magical practices. From an anthropological perspective, this dissertation proposes to explore the construction and expression of a Wiccan and gendered identity in Quebec, through public rites and Wiccan daily life. It is a question of taking a critical look at the way of apprehending the multiplicity of gendered identities today within Wicca. This ethnography aims to explore the theological changes that have arisen after the assertion of communities presenting a different vision of heteronormative gender identity

Towards core outcome set (COS) development: a follow-up descriptive survey of outcomes in Cochrane reviews

BACKGROUND: A core outcome set (COS) can address problems of outcome heterogeneity and outcome reporting bias in trials and systematic reviews, including Cochrane reviews, helping to reduce waste. One of the aims of the international Core Outcome Measures in Effectiveness Trials (COMET) Initiative is to link the development and use of COS with the outcomes specified and reported in Cochrane reviews, including the outcomes listed in the summary of findings (SoF) tables. As part of this work, an earlier exploratory survey of the outcomes of newly published 2007 and 2011 Cochrane reviews was performed. This survey examined the use of COS, the variety of specified outcomes, and outcome reporting in Cochrane reviews by Cochrane Review Group (CRG). To examine changes over time and to explore outcomes that were repeatedly specified over time in Cochrane reviews by CRG, we conducted a follow-up survey of outcomes in 2013 Cochrane reviews. METHODS: A descriptive survey of outcomes in Cochrane reviews that were first published in 2013. Outcomes specified in the methods sections and reported in the results section of the Cochrane reviews were examined by CRG. We also explored the uptake of SoF tables, the number of outcomes included in these, and the quality of the evidence for the outcomes. RESULTS: Across the 50 CRGs, 375 Cochrane reviews that included at least one study specified a total of 3142 outcomes. Of these outcomes, 32 % (1008) were not reported in the results section of these reviews. For 23 % (233) of these non-reported outcomes, we did not find any reason in the text of the review for this non-report. Fifty-seven percent (216/375) of reviews included a SoF table. CONCLUSIONS: The proportion of specified outcomes that were reported in Cochrane reviews had increased in 2013 (68 %) compared to 2007 (61 %) and 2011 (65 %). Importantly, 2013 Cochrane reviews that did not report specified outcomes were twice as likely to provide an explanation for why the outcome was not reported. There has been an increased uptake of SoF tables in Cochrane reviews. Outcomes that were repeatedly specified in Cochrane reviews by CRG in 2007, 2011, and 2013 may assist COS development. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s13643-015-0060-0) contains supplementary material, which is available to authorized users

Using qualitative methods to inform the trade-off between content validity and consistency in utility assessment: the example of type 2 diabetes and Alzheimer's Disease

<p>Abstract</p> <p>Background</p> <p>Key stakeholders regard generic utility instruments as suitable tools to inform health technology assessment decision-making regarding allocation of resources across competing interventions. These instruments require a 'descriptor', a 'valuation' and a 'perspective' of the economic evaluation. There are various approaches that can be taken for each of these, offering a potential lack of consistency between instruments (a basic requirement for comparisons across diseases). The 'reference method' has been proposed as a way to address the limitations of the Quality-Adjusted Life Year (QALY). However, the degree to which generic measures can assess patients' specific experiences with their disease would remain unresolved. This has been neglected in the discussions on methods development and its impact on the QALY values obtained and resulting cost per QALY estimate underestimated. This study explored the content of utility instruments relevant to type 2 diabetes and Alzheimer's disease (AD) as examples, and the role of qualitative research in informing the trade-off between content coverage and consistency.</p> <p>Method</p> <p>A literature review was performed to identify qualitative and quantitative studies regarding patients' experiences with type 2 diabetes or AD, and associated treatments. Conceptual models for each indication were developed. Generic- and disease-specific instruments were mapped to the conceptual models.</p> <p>Results</p> <p>Findings showed that published descriptions of relevant concepts important to patients with type 2 diabetes or AD are available for consideration in deciding on the most comprehensive approach to utility assessment. While the 15-dimensional health related quality of life measure (15D) seemed the most comprehensive measure for both diseases, the Health Utilities Index 3 (HUI 3) seemed to have the least coverage for type 2 diabetes and the EuroQol-5 Dimensions (EQ-5D) for AD. Furthermore, some of the utility instruments contained items that could not be mapped onto either of the proposed conceptual models.</p> <p>Conclusions</p> <p>Content of the utility measure has a significant impact on the treatment effects that can be observed. This varies from one disease to the next and as such contributes to lack of consistency in observable utility effects and incremental utility scores. This observation appears to have been omitted from the method development considerations such as reference methods. As a result, we recommend that patients' perspectives obtained via qualitative methods are taken into consideration in the ongoing methods development in health state descriptions for generic utility instruments. Also, as a more immediate contribution to improving decision making, we propose that a content map of the chosen utility measure with patient-reported domains be provided as standard reporting in utility measurement in order to improve the transparency of the trade-offs in relation to patient relevance and consistency.</p

Developing the agenda for core outcome set development

Introduction and aims A core outcome set (COS) is defined as an agreed standardised set of outcomes that should be measured and reported, as a minimum, in all clinical trials in specific areas of health or health care. Their use allows research to be compared and combined as appropriate, and may ensure that all studies provide usable information. There is currently no accepted gold standard method for COS development and further work was necessary to explore choices about methods, and what the priorities are for guidance and further research in this area. This thesis aimed to investigate what is currently known about COS development, and explore developers’ experiences of developing COS. Methods A systematic review of studies reporting the development of a COS was undertaken, and the methodological techniques used in these studies was described. A mixed methods approach was undertaken to explore COS development, drawing on qualitative interviews with, and an online web-based survey of, COS developers. This thesis used a Triangulation Design to obtain different but complementary data on the same topic for comprehensiveness. Results The systematic review identified 198 published studies that described the development of COS for clinical trials. The systematic review demonstrated variability in the ways that COS had been developed, particularly the methods used and the stakeholders included as participants in the process. Patient participants had infrequently been included in the development of COS (18%). Key aspects of the process were frequently not reported. Eighty-one (48%) developers completed the survey. The majority of survey respondents (73%) felt that there is a need for methodological guidance or research to inform future activity to develop COS. Areas for future guidance or research included: stakeholder involvement, patient involvement in particular; choice of methodology, and consensus formation. 32 interviews were conducted with COS developers (18 with published, and 14 with ongoing, COS projects). Developers found the process of COS development to be a challenging process, in part due to the nature of COS development being an emerging field of research, but also in part to not always considering important methodological details from the outset, for example their choice of methods and stakeholders. There was a variety of influences on developers’ choice of methods, which included the previous literature on COS development, expert advice, developers’ own experience with methods and the resources available to developers. The absence of guidance in COS development, and the prominence of uncertainties, dominated developers’ accounts. Conclusions The work in this thesis has brought COS together in one place for the first time, summarises key characteristics of COS and their development, and provides the first comprehensive account of COS development. It will inform the development of much needed guidance in this area and help to improve COS development methodology. Guidance needs to determine commonalities across different disease areas, and promote awareness of important issues; encourage COS developers to think about their own contexts and circumstances, and enable COS developers to make decisions about methods that best suit their needs and resources. Guidance seems to be needed for all aspects of COS development, but it was particularly felt that guidance around the systematic review process, conduct of Delphi, and conduct of consensus meetings, are high priority

Choosing Important Health Outcomes for Comparative Effectiveness Research: An Updated Review and Identification of Gaps

<div><p>Background</p><p>The COMET (Core Outcome Measures in Effectiveness Trials) Initiative promotes the development and application of core outcome sets (COS), including relevant studies in an online database. In order to keep the database current, an annual search of the literature is undertaken. This study aimed to update a previous systematic review, in order to identify any further studies where a COS has been developed. Furthermore, no prioritization for COS development has previously been undertaken, therefore this study also aimed to identify COS relevant to the world’s most prevalent health conditions.</p><p>Methods</p><p>The methods used in this updated review followed the same approach used in the original review and the previous update. A survey was also sent to the corresponding authors of COS identified for inclusion in this review, to ascertain what lessons they had learnt from developing their COS. Additionally, the COMET database was searched to identify COS that might be relevant to the conditions with the highest global prevalence.</p><p>Results</p><p>Twenty-five reports relating to 22 new studies were eligible for inclusion in the review. Further improvements were identified in relation to the description of the scope of the COS, use of the Delphi technique, and the inclusion of patient participants within the development process. Additionally, 33 published and ongoing COS were identified for 13 of the world’s most prevalent conditions.</p><p>Conclusion</p><p>The development of a reporting guideline and minimum standards should contribute towards future improvements in development and reporting of COS. This study has also described a first approach to identifying gaps in existing COS, and to priority setting in this area. Important gaps have been identified, on the basis of global burden of disease, and the development and application of COS in these areas should be considered a priority.</p></div

ADRIC: Adverse Drug Reactions In Children - a programme of research using mixed methods

Aims To comprehensively investigate the incidence, nature and risk factors of adverse drug reactions (ADRs) in a hospital-based population of children, with rigorous assessment of causality, severity and avoidability, and to assess the consequent impact on children and families. We aimed to improve the assessment of ADRs by development of new tools to assess causality and avoidability, and to minimise the impact on families by developing better strategies for communication. Review methods Two prospective observational studies, each over 1 year, were conducted to assess ADRs in children associated with admission to hospital, and those occurring in children who were in hospital for longer than 48 hours. We conducted a comprehensive systematic review of ADRs in children. We used the findings from these studies to develop and validate tools to assess causality and avoidability of ADRs, and conducted interviews with parents and children who had experienced ADRs, using these findings to develop a leaflet for parents to inform a communication strategy about ADRs. Results The estimated incidence of ADRs detected in children on admission to hospital was 2.9% [95% confidence interval (CI) 2.5% to 3.3%]. Of the reactions, 22.1% (95% CI 17% to 28%) were either definitely or possibly avoidable. Prescriptions originating in the community accounted for 44 out of 249 (17.7%) of ADRs, the remainder originating from hospital. A total of 120 out of 249 (48.2%) reactions resulted from treatment for malignancies. Off-label and/or unlicensed (OLUL) medicines were more likely to be implicated in an ADR than authorised medicines [relative risk (RR) 1.67, 95% CI 1.38 to 2.02; p  48 hours, the overall incidence of definite and probable ADRs based on all admissions was 15.9% (95% CI 15.0 to 16.8). Opiate analgesic drugs and drugs used in general anaesthesia (GA) accounted for > 50% of all drugs implicated in ADRs. The odds ratio of an OLUL drug being implicated in an ADR compared with an authorised drug was 2.25 (95% CI 1.95 to 2.59; p < 0.001). Risk factors identified were exposure to a GA, age, oncology treatment and number of medicines. The systematic review estimated that the incidence rates for ADRs causing hospital admission ranged from 0.4% to 10.3% of all children [pooled estimate of 2.9% (95% CI 2.6% to 3.1%)] and from 0.6% to 16.8% of all children exposed to a drug during hospital stay. New tools to assess causality and avoidability of ADRs have been developed and validated. Many parents described being dissatisfied with clinician communication about ADRs, whereas parents of children with cancer emphasised confidence in clinician management of ADRs and the way clinicians communicated about medicines. The accounts of children and young people largely reflected parents’ accounts. Clinicians described using all of the features of communication that parents wanted to see, but made active decisions about when and what to communicate to families about suspected ADRs, which meant that communication may not always match families’ needs and expectations. We developed a leaflet to assist clinicians in communicating ADRs to parents. Conclusion The Adverse Drug Reactions In Children (ADRIC) programme has provided the most comprehensive assessment, to date, of the size and nature of ADRs in children presenting to, and cared for in, hospital, and the outputs that have resulted will improve the management and understanding of ADRs in children and adults within the NHS. Recommendations for future research: assess the values that parents and children place on the use of different medicines and the risks that they will find acceptable within these contexts; focusing on high-risk drugs identified in ADRIC, determine the optimum drug dose for children through the development of a gold standard practice for the extrapolation of adult drug doses, alongside targeted pharmacokinetic/pharmacodynamic studies; assess the research and clinical applications of the Liverpool Causality Assessment Tool and the Liverpool Avoidability Assessment Tool; evaluate, in more detail, morbidities associated with anaesthesia and surgery in children, including follow-up in the community and in the home setting and an assessment of the most appropriate treatment regimens to prevent pain, vomiting and other postoperative complications; further evaluate strategies for communication with families, children and young people about ADRs; and quantify ADRs in other settings, for example critical care and neonatology

Methods used to assess outcome consistency in clinical studies: A literature-based evaluation.

Evaluation studies of outcomes used in clinical research and their consistency are appearing more frequently in the literature, as a key part of the core outcome set (COS) development. Current guidance suggests such evaluation studies should use systematic review methodology as their default. We aimed to examine the methods used. We searched the Core Outcome Measures in Effectiveness Trials (COMET) database (up to May 2019) supplementing it with additional resources. We included evaluation studies of outcome consistency in clinical studies across health subjects and used a subset of A MeaSurement Tool to Assess systematic Reviews (AMSTAR) 2 (items 1-9) to assess their methods. Of 93 included evaluation studies of outcome consistency (90 full reports, three summaries), 91% (85/93) reported performing literature searches in at least one bibliographic database, and 79% (73/93) was labelled as a "systematic review". The evaluations varied in terms of satisfying AMSTAR 2 criteria, such that 81/93 (87%) had implemented PICO in the research question, whereas only 5/93 (6%) had included the exclusions list. None of the evaluation studies explained how inconsistency of outcomes was detected, however, 80/90 (88%) concluded inconsistency in individual outcomes (66%, 55/90) or outcome domains (20%, 18/90). Methods used in evaluation studies of outcome consistency in clinical studies differed considerably. Despite frequent being labelled as a "systematic review", adoption of systematic review methodology is selective. While the impact on COS development is unknown, authors of these studies should refrain from labelling them as "systematic review" and focus on ensuring that the methods used to generate the different outcomes and outcome domains are reported transparently

Parodie et carnavalisation : l’exemple de Hubert Aquin

One of the defining features of patient-centered outcomes research (PCOR) is the emphasis on reporting outcomes that are meaningful to patients. Accelerating progress toward this objective could be achieved through increased development and uptake of core outcome sets (COS), which are intended to represent a standardized minimum set of outcomes that should bemeasured and reported in all clinical trials in a specific condition. The level of activity around COS has increased significantly over recent years, however there are many important clinical conditions for which high quality COS havenot been developed. We believe that meaningful progress toward the goals behind the significant investments in PCOR will depend on sustained attention to the challenges of COS development and uptake