Suchergebnisse

INTRODUCTION: Health-related quality of life evaluation is recognized as an important outcome in the assessment of boys with haemophilia. In fact, reliable health-related quality of life data are even more critical in developing countries to advocate for government agencies to develop national haemophilia care programmes. However, validated tools are not yet available in sub-Saharan African countries. AIMS: The purpose of this study was to complete the cultural adaptation and validation of the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool version(2.0) (CHO-KLAT(2.0)) in Côte d'Ivoire. METHODS: The process included four steps: a linguistic adaptation, cognitive debriefing interviews with children and their parents, a validity assessment with the Pediatric Quality of Life Inventory (PedsQL) as a comparator, and a test-retest reliability assessment. RESULTS: The initial Ivoirian version of the CHO-KLAT(2.0) was developed through a linguistic adaptation performed in close collaboration with members of the local medical team and haemophilia community. Cognitive debriefings were completed with five boys and their parents, with the final Ivoirian version of the CHO-KLAT(2.0) developed in September 2017. The validation process included 37 boys with haemophilia (mean age: 11.4 years; 34 with severe and three with moderate forms of haemophilia, all treated on demand) and their parents. Among the child-reported population (n = 20), we observed a mean CHO-KLAT(2.0) score of 51.3 ± 9.2; there was a moderate correlation between the CHO-KLAT(2.0) and PedsQL scores (r = 0.581; p = 0.007) and an inverse correlation of the CHO-KLAT(2.0) and PedsQL scores with the global rating of the degree to which the boys were bothered by their haemophilia. The mean parent proxy CHO-KLAT(2.0) score (n = 17) was 53.5 ± 9.8. Among the parents, we found no significant correlation between the Ivoirian CHO-KLAT(2.0) and PedsQL scores or between the parent-reported scores and the parent global ratings of bother. The test-retest intraclass ...

Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units. Methods: An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/ or legislating for end-of-life decisions and practices. The participation rate was 89% (n = 58). Results: The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices. Conclusion: Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.

Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units. Methods: An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/ or legislating for end-of-life decisions and practices. The participation rate was 89% (n = 58). Results: The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices. Conclusion: Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.

Objectives: We identified factors associated with healthcare costs and health-related quality of life (HRQoL) of multimorbid older adults with polypharmacy. Methods: Using data from the OPERAM (OPtimising thERapy to prevent Avoidable hospital admissions in the Multimorbid older people) trial, we described the magnitude and composition of healthcare costs, and time trends of HRQoL, during 1-year after an acute-care hospitalization. We performed a cluster analysis to identify groups with different cost and HRQoL trends. Using multilevel models, we also identified factors associated with costs and HRQoL. Results: Two months after hospitalization monthly mean costs peaked (CHF 7′124) and HRQoL was highest (0.67). They both decreased thereafter. Age, falls, and comorbidities were associated with higher 1-year costs. Being female and housebound were negatively associated with HRQoL, while moderate alcohol consumption had a positive association. Being independent in daily activities was associated with lower costs and higher HRQoL. Conclusion: Although only some identified potential influences on costs and HRQoL are modifiable, our observations support the importance of prevention before health deterioration in older people with multimorbid illness and associated polypharmacy.

Les changements climatiques sont à présent une certitude au niveau mondial. Le 4 ème rapport du GIEC, publié en 2007, met en évidence l'origine et les responsabilités humaines liées à ce phénomène. Toutes les parties du globe sont susceptibles d'être affectées. Il n'y a pas un domaine ni un secteur d'activité qui n'en ressentira pas les effets d'où le besoin d'une nécessaire adaptation. Dès 2006, la Commission Européenne s'est engagée vers la problématique de l'adaptation au changement climatique. Tout d'abord au travers d'une consultation autour du livre vert « Adaptation au changement climatique en Europe : les possibilités d'action de l'Union Européenne » puis à l'aide d'un livre blanc « Adaptation au changement climatique: vers un cadre d'action européen ». Si la Commission Européenne y étudie la possibilité de rendre obligatoire les stratégies d'adaptation, plusieurs pays européens ont déjà réalisé la leur : la Finlande, le Royaume-Uni, la France… La Belgique via la Commission Nationale Climat a adopté sa « Stratégie Nationale Climat» fin 2010 avec l'objectif de pouvoir proposer un plan d'action opérationnel pour 2012. Ce plan d'action résultera de la fusion des plans d'actions des trois régions et du fédéral : la région flamande a réalisé une étude pour initier le processus de développement de son plan d'adaptation en 2010, la région Wallonne a emboité le pas par la présente étude et la région de Bruxelles Capitale ainsi que le Fédéral ont l'intention de suivre la même démarche en 2011. Cette étude a conduit à dresser un bilan exhaustif – caractérisation, vulnérabilités actuelles, vulnérabilités futures – de la région Wallonne suivant sept thématiques : l'agriculture, l'eau, les infrastructures/l'aménagement du territoire, la santé, l'énergie, la biodiversité et la forêt. Une consultation élargie d'experts de la région Wallonne a permis de dégager les principales mesures à mettre en œuvre afin d'adapter la région Wallonne au changement climatique. Le chapitre 1 « L'adaptation au changement climatique dans les régions européennes » dresse un état des lieux des stratégies d'adaptation aux changements climatiques mises en œuvre en Europe en vue d'en tirer des enseignements pour cette étude. Le chapitre 2 « Les avenirs climatiques de la région Wallonne » rend compte des projections climatiques spécifiquement mises en œuvre dans le cadre de cette étude et qui ont servi de support à la détermination des vulnérabilités futures de la région Wallonne. Le chapitre 3 « La vulnérabilité de la Wallonie aux changements climatiques » explore suivant sept thèmes – l'agriculture, l'eau, les infrastructures/l'aménagement du territoire, la santé, l'énergie, la biodiversité et la forêt – la région Wallonne dans le but de décrire ses vulnérabilités actuelles et futures mais aussi en mettant en avant une hiérarchisation temporelle et sectorielle des impacts. Le chapitre 4 « L'adaptation de la région Wallonne aux changements climatiques » définit les principes directeurs suivis pour les choix d'adaptation au changement climatique ainsi que les orientations proposées par thématiques. Le chapitre 5 « Vers un plan d'actions » présente les mesures par thématique avec les premiers éléments d'un dispositif de suivi évaluation. Enfin, les annexes rassemblent, d'une part, des documents opérationnels – les fiches thématiques complètes, le plan d'actions, la note d'orientation stratégique et l'analyse transversale – et des documents supports – cartes et base de données de projections climatiques, benchmark. ; Climate change is now globally accepted. The 4th IPCC report, published in 2007, clearly indicates that this phenomenon is mostly the result of human activity. All parts of the globe are potentially at risk. There are no activity sectors that will be left untouched. Adaptation is therefore necessary. Since 2006, the European Commission has been looking at the climate change adaptation issue. It first held a consultation on the European Commission Green Paper "adapting to climate change in Europe - options for EU action". This led to the publication of the White Paper « Adapting to climate change: towards a European framework for action ». In this document, the EC puts forward the idea of a compulsory Adaptation Strategy at Member State level. Several EU countries have already done so: Finland, United Kingdom and France. Belgium, through the National Climate Commission, adopted its « National Climate Strategy » in late 2010. The objective is to recommend an operational action plan by 2012. This action plan will be the result of a merger between the action plans of the three regions and the federal governments. The Flemish region launched a study to start the development process of their action plan in 2010; the Walloon region has followed with this study and the Brussels region and the Federal should launch their studies during this year (2011). This study enabled to draw a complete review – characteristics, current vulnerabilities, future vulnerabilities - of the Walloon region on seven topics: Agriculture, water, infrastructure/ spatial planning, health, energy, biodiversity and forests. An enlarged experts' consultation identified key measures to implement in order for Wallonia to adapt to climate change. Chapter 1, « climate change adaptation in European regions », is a stock-taking exercise of adaptation strategies found in Europe in order to draw relevant lessons for this study. Chapter 2: « the climate futures of Wallonia", is an analysis of the climate projection specifically carried out for this study. Those projections were used to identify Wallonia's vulnerabilities. Chapter 3 « Wallonia's vulnerabilities to Climate change" explores the seven themes Agriculture, water, infrastructure/ spatial planning, health, energy, biodiversity and forests to describe the current and future risks and to put forward a time-dependent and sectoral hierarchy of impacts. Chapter 4 « Wallonia's adaptation to climate change » states the core principles used to define the adaptation choices as well as the proposed guidelines for each theme. Chapter 5 « towards an action plan » presents the adaptation measures by theme along with the first elements of an evaluation procedure. Finally, the appendices contain the operational documents: the full thematic sheets, the action plan, the strategic guideline paper and the transversal analysis and the supporting documents: maps, climate projections database and the benchmarks.