321 research outputs found
Effect of dual pulmonary vasodilator therapy in pulmonary arterial hypertension associated with congenital heart disease: a retrospective analysis
Background: Patients with pulmonary arterial
hypertension (PAH) are managed according to
evidence-based treatment guidelines.
Methods and results: In this single-centre
retrospective analysis, we examined outcomes of
patients with PAH caused by congenital heart disease
(PAH-CHD) with respect to exercise capacity and
survival of adults treated with either bosentan or
sildenafil monotherapy or bosentan-sildenafil dual
therapy between January 2007 and January 2014. Of
the 82 patients analysed, 29 had Down syndrome; 54
(65.8%) received bosentan monotherapy, 16 (19.5%)
sildenafil monotherapy and 12 (14.6%) dual therapy.
Mean treatment duration was 2.5 years for all patients
and 4.1 years for 38 patients treated for â„2 years.
Pooled patient and treatment data showed initial
improvement followed by stabilisation in mean 6 min
walk distance (6MWD). For Down and non-Down
patients, mean 6MWD increased and then stabilised on
bosentan monotherapy. Mean 6MWD of patients on
dual therapy at the time of analysis was 246.3 m
before PAH-specific therapy initiation, 211.9 m
immediately prior to addition of a second therapy and
214.4 m at last visit while on dual therapy. 1, 2 and 3-
year survival rates for all patients from time of
treatment initiation were 96%, 87% and 80%,
respectively.
Conclusions: For the majority of patients,
monotherapy with a PAH-specific medication provided
improved and sustained exercise benefits. For the small
percentage of patients who required it, add-on therapy
appeared to prevent further deterioration in exercise
capacity but did not improve 6MWD
A protocol for co-creating research project lay summaries with stakeholders:Guideline development for Canada's AGE-WELL Network
Background
Funding bodies increasingly require researchers to write lay summaries to communicate projectsâ real-world relevance to the public in an accessible way. However, research proposals and findings are generally not easily readable or understandable by non-specialist readers. Many researchers find writing lay summaries difficult because they typically write for fellow subject specialists or academics rather than the general public or a non-specialist audience. The primary objective of our project is to develop guidelines for researchers in Canadaâs AGE-WELL Network of Centres of Excellence, and ultimately various other disciplines, sectors, and institutions, to co-create lay summaries of research projects with stakeholders. To begin, we produced a protocol for co-creating a lay summary based on workshops we organized and facilitated for an AGE-WELL researcher. This paper presents the lay summary co-creation protocol that AGE-WELL researchers will be invited to use.
Methods
Eligible participants in this project will be 24 AgeTech project researchers who are funded by the AGE-WELL network in its Core Research Program 2020. If they agree to participate in this project, we will invite them to use our protocol to co-produce a lay summary of their respective projects with stakeholders. The protocol comprises six steps: Investigate principles of writing a good lay summary, identify the target readership, identify stakeholders to collaborate with, recruit the identified stakeholders to work on a lay summary, prepare for workshop sessions, and execute the sessions. To help participants through the process, we will provide them with a guide to developing an accessible, readable research lay summary, help them make decisions, and host, and facilitate if needed, their lay summary co-creation workshops.
Discussion
Public-facing research outputs, including lay summaries, are increasingly important knowledge translation strategies to promote the impact of research on real-world issues. To produce lay summaries that include information that will interest a non-specialist readership and that are written in accessible language, stakeholder engagement is key. Furthermore, both researchers and stakeholders benefit by participating in the co-creation process. We hope the protocol helps researchers collaborate with stakeholders effectively to co-produce lay summaries that meet the needs of both the public and project funders
Doing gender locally: The importance of âplaceâ in understanding marginalised masculinities and young menâs transitions to âsafeâ and successful futures
Observable anxieties have been developing about the position of boys and young men in contemporary society in recent years. This is expressed as a crisis of masculinity, in which place is often implicitly implicated, but is rarely considered for its role in the shaping of young menâs practices, trajectories and aspirations. Drawing on research conducted with young people who accessed a range of social care support services, this article argues that transition means different things for young men in different locales and that local definitions of masculinity are required to better understand young menâs lives and the opportunities available to them. The authors argue that home life, street life, individual neighbourhoods, regions and nations all shaped the young menâs identities and the practices they (and the staff working with them) drew on in order to create successful futures and âsafeâ forms of masculinity. It is suggested that this place-based approach has the potential to re-shape the âcrisisâ discourse surrounding masculinity and the anxieties associated with young men
Learning through social spaces: migrant women and lifelong learning in post-colonial London
This article shows how migrant women engage in learning through social spaces. It argues that such spaces are little recognised, and that there are multiple ways in which migrant women construct and negotiate their informal learning through socialising with other women in different informal modes. Additionally, the article shows how learning is shaped by the socio-political, geographical and multicultural context of living in London, outlining ways in which gendered and racialised identities shape, construct and constrain participation in lifelong learning. The article shows that one way in which migrant women resist (post)colonial constructions of difference is by engaging in informal and non-formal lifelong learning, arguing that the benefits are (at least) two-fold. The women develop skills (including language skills) but also use their informal learning to develop what is referred to in this article as 'relational capital'. The article concludes that informal lifelong learning developed through social spaces can enhance a sense of belonging for migrant women
Genomic profiling reveals spatial intra-tumor heterogeneity in follicular lymphoma
We are indebted to the patients for donating
tumor specimens as part of this study. The authors thank the Centre de
Ressources Biologiques (CRB)-Santé of Rennes (BB-0033-00056) for
patient samples, Queen Mary University of London Genome Centre
for Illumina Miseq sequencing, and the support by the National
Institute for Health Research (NIHR) Biomedical Research Centre at
Guyâs and St Thomasâ NHS Foundation Trust and Kingâs College
London for Illumina Hiseq sequencing. The views expressed are
those of the authors and not necessarily those of the NHS, the NIHR,
or the Department of Health. This work was supported by grants
from the Kay Kendall Leukaemia Fund (KKL 757 awarded to J.O.),
Cancer Research UK (22742 awarded to J.O., 15968 awarded to J.F.,
Clinical Research Fellowship awarded to S.A.), Bloodwise through
funding of the Precision Medicine for Aggressive Lymphoma (PMAL)
consortium, Centre for Genomic Health, Queen Mary University
of London, Carte dâIdentitĂ© des Tumeurs (CIT), Ligue National
contre le Cancer, PĂŽle de biologie hospital universitaire de
Rennes, CRB-Santé of Rennes (BB-0033-00056), and CeVi/Carnot
program
Regions of High Out-Of-Hospital Cardiac Arrest Incidence and Low Bystander CPR Rates in Victoria, Australia
BACKGROUND: Out-of-hospital cardiac arrest (OHCA) remains a major public health issue and research has shown that large regional variation in outcomes exists. Of the interventions associated with survival, the provision of bystander CPR is one of the most important modifiable factors. The aim of this study is to identify census areas with high incidence of OHCA and low rates of bystander CPR in Victoria, Australia. METHODS: We conducted an observational study using prospectively collected population-based OHCA data from the state of Victoria in Australia. Using ArcGIS (ArcMap 10.0), we linked the location of the arrest using the dispatch coordinates (longitude and latitude) to Victorian Local Government Areas (LGAs). We used Bayesian hierarchical models with random effects on each LGA to provide shrunken estimates of the rates of bystander CPR and the incidence rates. RESULTS: Over the study period there were 31,019 adult OHCA attended, of which 21,436 (69.1%) cases were of presumed cardiac etiology. Significant variation in the incidence of OHCA among LGAs was observed. There was a 3 fold difference in the incidence rate between the lowest and highest LGAs, ranging from 38.5 to 115.1 cases per 100,000 person-years. The overall rate of bystander CPR for bystander witnessed OHCAs was 62.4%, with the rate increasing from 56.4% in 2008-2010 to 68.6% in 2010-2013. There was a 25.1% absolute difference in bystander CPR rates between the highest and lowest LGAs. CONCLUSION: Significant regional variation in OHCA incidence and bystander CPR rates exists throughout Victoria. Regions with high incidence and low bystander CPR participation can be identified and would make suitable targets for interventions to improve CPR participation rates
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