37 research outputs found
Agriculture Trade Reform and Sustainable and Inclusive Food Security
The food system in the Asia-Pacific needs to be viewed as a whole, from production to plate, in order not only to achieve food security in the region but also to contribute to sustainable and inclusive growth. To that end, there is a strong case for AsiaPacific economies to bring a renewed focus to structural reform in agriculture, including substantially reducing trade-distorting subsidies and liberalising market access barriers, alongside seeking to increase productivity, improve infrastructure and leverage digital technologies. The Covid-19 pandemic underscores the importance of open, undistorted markets, and will also stand economies in good stead in the longer term as adverse impacts from climate change add to production challenges and potential food insecurity
Impact of the COVID-19 pandemic on cancer assessment in primary care: a qualitative study of GP views
Funding This research was co-funded by the National Institute for Health Research (NIHR) Policy Research Programme, conducted through the Policy Research Unit in Cancer Awareness, Screening and Early Diagnosis, PR-PRU-1217–21601. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. The study was also supported by the CanTest Collaborative funded by Cancer Research UK C8640/A23385, of which Fiona Walter is director, Richard Neal is associate director, Suzanne Scott is co-investigator, and Natalia Calanzani and Stephanie Honey are researchers. The funders of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report.Peer reviewedPublisher PD
Using co-production to increase activity in acute stroke units : the CREATE mixed-methods study
Background: Stroke is the most common neurological disability in the UK. Any activity contributes to recovery, but stroke patients can be inactive for > 60% of their waking hours. This problem remains, despite organisational changes and targeted interventions. A new approach to addressing post-stroke inactivity is needed. Experience-based co-design has successfully initiated improvements for patients and staff in other acute settings. Experience-based co-design uses observational fieldwork and filmed narratives with patients to trigger different conversations and interactions between patients and staff to improve health-care services.
Objectives: To complete a rapid evidence synthesis of the efficacy and effectiveness of co-production as an approach to quality improvement in acute health-care settings; to evaluate the feasibility and impact of patients, carers and staff co-producing and implementing interventions to increase supervised and independent therapeutic patient activity in acute stroke units; and to understand the experience of participating in experience-based co-design and whether or not interventions developed and implemented in two units could transfer to two additional units using an accelerated experience-based co-design cycle.
Design: A mixed-methods case comparison using interviews, observations, behavioural mapping and self-report surveys (patient-reported outcome measure/patient-reported experience measure) pre and post implementation of experience-based co-design cycles, and a process evaluation informed by normalisation process theory.
Setting: The setting was two stroke units (acute and rehabilitation) in London and two in Yorkshire.
Participants: In total, 130 staff, 76 stroke patients and 47 carers took part.
Findings: The rapid evidence synthesis showed a lack of rigorous evaluation of co-produced interventions in acute health care, and the need for a robust critique of co-production approaches. Interviews and observations (365 hours) identified that it was feasible to co-produce and implement interventions to increase activity in priority areas including ‘space’ (environment), ‘activity’ and, to a lesser extent, ‘communication’. Patients and families reported benefits from participating in co-design and perceived that they were equal and valued members. Staff perceived that experience-based co-design provided a positive experience, was a valuable improvement approach and led to increased activity opportunities. Observations and interviews confirmed the use of new social spaces and increased activity opportunities. However, staff interactions remained largely task focused, with limited focus on enabling patient activity. Behavioural mapping indicated a mixed pattern of activity pre and post implementation of co-designed changes. Patient-reported outcome measure/patient-reported experience measure response rates were low, at 12–38%; pre- and post-experience-based co-design cohorts reported dependency, emotional and social limitations consistent with national statistics. Post-experience-based co-design patient-reported experience measure data indicated that more respondents reported that they had ‘enough things to do in their free time’. The use of experience-based co-design – full and accelerated – legitimised and supported co-production activity. Staff, patients and families played a pivotal role in intervention co-design. All participants recognised that increased activity should be embedded in everyday routines and in work on stroke units.
Limitations: Communication by staff that enabled patient activity was challenging to initiate and sustain.
Conclusions: It was feasible to implement experience-based co-design in stroke units. This resulted in some positive changes in unit environments and increased activity opportunities for patients. There was no discernible difference in experiences or outcomes between full and accelerated experience-based co-design. Future work should consider multiple ways to embed increased patient activity into everyday routines in stroke units
Co-designing organisational improvements and interventions to increase inpatient activity in four stroke units in England : a mixed-methods process evaluation using normalisation process theory
Objective: To explore facilitators and barriers to using Experience-based Co-design (EBCD) and accelerated EBCD (AEBCD) in the development and implementation of interventions to increase activity opportunities for inpatient stroke survivors.
Design: Mixed-methods process evaluation underpinned by normalisation process theory (NPT).
Setting: Four post-acute rehabilitation stroke units in England.
Participants: Stroke survivors, family members, stroke unit staff, hospital managers, support staff and volunteers. Data informing our NPT analysis comprised: ethnographic observations, n= 366 hours; semi-structured interviews with 76 staff, 53 stroke survivors and 27 family members pre or post EBCD/AEBCD implementation; and observation of 43 co-design meetings involving 23 stroke survivors, 21 family carers and 54 staff
Results: Former patients and families valued participation in EBCD/AEBCD perceiving they were equal partners in co-design. Staff engaged with EBCD/AEBCD, reporting it as valuable improvement approach leading to increased activity opportunities. The structured EBCD/AEBCD approach was influential in terms of progressing coherence and cognitive participation and legitimated staff involvement in the process. Researcher facilitation of EBCD/AEBCD supported cognitive participation collective action and reflexive monitoring which was important in implementing and sustaining co-design activities. Observations and interviews post EBCD/AEBCD cycles confirmed creation and use of new social spaces and increased activity opportunities in all units. Changes occurred without increased staffing or organisational resource allocation. EBCD/AEBCD facilitated engagement with wider hospital resources and local communities increasing and enhancing activity opportunities. However, outside of structured group activity many individual staff-patient interactions remained task-focused with limited focus on enabling patient activity.
Conclusions: Using EBCD and AEBCD facilitated the development and implementation of environmental changes and revisions to work routines which supported increased activity opportunities in stroke units providing post-acute and rehabilitation care. Former stroke patients and carers contributed to improvements. Normalisation process theory’s generative mechanisms were instrumental in analysis and interpretation of facilitators and barriers at the individual, group and organisational levels
The phenotype of floating-harbor syndrome:clinical characterization of 52 individuals with mutations in exon 34 of SRCAP
Background\ud
Floating-Harbor syndrome (FHS) is a rare condition characterized by short stature, delays in expressive language, and a distinctive facial appearance. Recently, heterozygous truncating mutations in SRCAP were determined to be disease-causing. With the availability of a DNA based confirmatory test, we set forth to define the clinical features of this syndrome.\ud
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Methods and results\ud
Clinical information on fifty-two individuals with SRCAP mutations was collected using standardized questionnaires. Twenty-four males and twenty-eight females were studied with ages ranging from 2 to 52 years. The facial phenotype and expressive language impairments were defining features within the group. Height measurements were typically between minus two and minus four standard deviations, with occipitofrontal circumferences usually within the average range. Thirty-three of the subjects (63%) had at least one major anomaly requiring medical intervention. We did not observe any specific phenotype-genotype correlations.\ud
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Conclusions\ud
This large cohort of individuals with molecularly confirmed FHS has allowed us to better delineate the clinical features of this rare but classic genetic syndrome, thereby facilitating the development of management protocols.The authors would like to thank the families for their cooperation and permission to publish these findings. SdM would like to thank Barto Otten. Funding was provided by the Government of Canada through Genome Canada, the Canadian Institutes of Health Research (CIHR) and the Ontario Genomics Institute (OGI-049), by Genome Québec and Genome British Columbia, and the Manton Center for Orphan Disease Research at Children’s Hospital Boston. KMB is supported by a Clinical Investigatorship Award from the CIHR Institute of Genetics. AD is supported by NIH grant K23HD073351. BBAdV and HGB were financially supported by the AnEUploidy project (LSHG-CT-2006-37627). This work was selected for study by the FORGE Canada Steering Committee, which consists of K. Boycott (University of Ottawa), J. Friedman (University of British Columbia), J. Michaud (University of Montreal), F. Bernier (University of Calgary), M. Brudno (University of Toronto), B. Fernandez (Memorial University), B. Knoppers (McGill University), M. Samuels (Université de Montréal), and S. Scherer (University of Toronto). We thank the Galliera Genetic Bank - “Telethon Genetic Biobank Network” supported by Italian Telethon grants (project no. GTB07001) for providing us with specimens
A systematic review of patient reported factors associated with uptake and completion of cardiovascular lifestyle behaviour change
Background: Healthy lifestyles are an important facet of cardiovascular risk management. Unfortunately many individuals fail to engage with lifestyle change programmes. There are many factors that patients report as influencing their decisions about initiating lifestyle change. This is challenging for health care professionals who may lack the skills and time to address a broad range of barriers to lifestyle behaviour. Guidance on which factors to focus on during lifestyle consultations may assist healthcare professionals to hone their skills and knowledge leading to more productive patient interactions with ultimately better uptake of lifestyle behaviour change support. The aim of our study was to clarify which influences reported by patients predict uptake and completion of formal lifestyle change programmes. Methods: A systematic narrative review of quantitative observational studies reporting factors (influences) associated with uptake and completion of lifestyle behaviour change programmes. Quantitative observational studies involving patients at high risk of cardiovascular events were identified through electronic searching and screened against pre-defined selection criteria. Factors were extracted and organised into an existing qualitative framework. Results: 374 factors were extracted from 32 studies. Factors most consistently associated with uptake of lifestyle change related to support from family and friends, transport and other costs, and beliefs about the causes of illness and lifestyle change. Depression and anxiety also appear to influence uptake as well as completion. Many factors show inconsistent patterns with respect to uptake and completion of lifestyle change programmes. Conclusion: There are a small number of factors that consistently appear to influence uptake and completion of cardiovascular lifestyle behaviour change. These factors could be considered during patient consultations to promote a tailored approach to decision making about the most suitable type and level lifestyle behaviour change support
The phenotype of Floating-Harbor syndrome: Clinical characterization of 52 individuals with mutations in exon 34 of SRCAP
Background: Floating-Harbor syndrome (FHS) is a rare condition characterized by short stature, delays in expressive language, and a distinctive facial appearance. Recently, heterozygous truncating mutations in SRCAP were determined to be disease-causing. With the availability of a DNA based confirmatory test, we set forth to define the clinical features of this syndrome. Methods and results. Clinical information on fifty-two individuals with SRCAP mutations was collected using standardized questionnaires. Twenty-four males and twenty-eight females were studied with ages ranging from
Neurexin-1 and Frontal Lobe White Matter: An Overlapping Intermediate Phenotype for Schizophrenia and Autism Spectrum Disorders
Background: Structural variation in the neurexin-1 (NRXN1) gene increases risk for both autism spectrum disorders (ASD) and schizophrenia. However, the manner in which NRXN1 gene variation may be related to brain morphology to confer risk for ASD or schizophrenia is unknown. Method/Principal Findings: 53 healthy individuals between 18–59 years of age were genotyped at 11 single nucleotide polymorphisms of the NRXN1 gene. All subjects received structural MRI scans, which were processed to determine cortical gray and white matter lobar volumes, and volumes of striatal and thalamic structures. Each subject’s sensorimotor function was also assessed. The general linear model was used to calculate the influence of genetic variation on neural and cognitive phenotypes. Finally, in silico analysis was conducted to assess potential functional relevance of any polymorphisms associated with brain measures. A polymorphism located in the 39 untranslated region of NRXN1 significantly influenced white matter volumes in whole brain and frontal lobes after correcting for total brain volume, age and multiple comparisons. Follow-up in silico analysis revealed that this SNP is a putative microRNA binding site that may be of functional significance in regulating NRXN1 expression. This variant also influenced sensorimotor performance, a neurocognitive function impaired in both ASD and schizophrenia. Conclusions: Our findings demonstrate that the NRXN1 gene, a vulnerability gene for SCZ and ASD, influences brai