108 research outputs found

    LEADER as a vehicle for neo-endogenous rural development in England

    Get PDF
    LEADER emphasises neo-endogenous approaches where local rural development relies as much as possible on β€œbottom-up” activities. This research shows that the mainstreaming of LEADER saw certain compromises regarding the philosophical aspiration to give greater weight to local issues, local resources and local engagement. However, many LAGs learned to apply flexibility to meet local opportunities and challenges demonstrating how LEADER can empower local actors. Future challenges require LEADER to be more integrated with other rural policies and for the procedural elements to be simplified, especially for the smaller projects that have been found to make real impact at a very local level

    A review of the leader approach for delivering the rural development programme for England: a report for Defra

    Get PDF
    This report, commissioned by the Rural Communities Policy Unit at Defra, sets out the findings of a review of the Leader approach in England. The focus of the review is the impact of Leader in contributing to the delivery of the Rural Development Programme (RDP) in England, in order to inform the future Leader approach to delivering rural policy. The research is primarily based on a review of existing literature and in-depth qualitative research with Local Action Groups and other stakeholders involved in delivering or benefiting from the Leader approach. The review focuses on four key issues: 1) Evidence to support the rationale for use of EU resources to enable rural development – justifying intervention for the current programme and informing choices about interventions in the next programme 2) Evidence on the extent to which interventions have been effective to date and where future resources can be targeted 3) Evidence to provide an assessment of the impact of RDPE spend (2007-13) on outcomes – with reference to delivery mechanisms 4) Evidence to support prioritisation of activities to be funded under the next programme mapped against the six EU wide priorities for 2014-2020 and inform decisions about future delivery models

    The impact of severe haemophilia and the presence of target joints on health-related quality-of-life

    Get PDF
    Background: Joint damage remains a major complication associated with haemophilia and is widely accepted as one of the most debilitating symptoms for persons with severe haemophilia. The aim of this study is to describe how complications of haemophilia such as target joints influence health-related quality of life (HRQOL). Methods: Data on hemophilia patients without inhibitors were drawn from the β€˜Cost of Haemophilia across Europe – a Socioeconomic Survey’ (CHESS) study, a cost-of-illness assessment in severe haemophilia A and B across five European countries (France, Germany, Italy, Spain, and the UK). Physicians provided clinical and sociodemographic information for 1285 adult patients, 551 of whom completed corresponding questionnaires, including EQ-5D. A generalised linear model was developed to investigate the relationship between EQ-5D index score and target joint status (defined in the CHESS study as areas of chronic synovitis), adjusted for patient covariates including socio-demographic characteristics and comorbidities. Results: Five hundred and fifteen patients (42% of the sample) provided an EQ-5D response; a total of 692 target joints were recorded across the sample. Mean EQ-5D index score for patients with no target joints was 0.875 (standard deviation [SD] 0.179); for patients with one or more target joints, mean index score was 0.731 (SD 0.285). Compared to having no target joints, having one or more target joints was associated with lower index scores (average marginal effect (AME) -0.120; SD 0.0262; pΒ < 0.000). Conclusions: This study found that the presence of chronic synovitis has a significant negative impact on HRQOL for adults with severe haemophilia. Prevention, early diagnosis and treatment of target joints should be an important consideration for clinicians and patients when managing haemophilia

    Development of a haemophilia physiotherapy intervention for optimum musculoskeletal health (Dolphin trial)

    Get PDF
    Introduction: Haemophilic arthropathy is associated with muscle weakness and may be reduced prior to the onset of clinical arthropathy.Muscle weakness is strongly correlated to reduced walking distances, slower ascent and descent of stairs, and altered joint motion and forces during weight bearing activities. Our aim was to develop a muscle strengthening exercise intervention for children that could be tested in a randomised clinical trial. Methods: We conducted modified Nominal Group Technique focus groups with academic experts and specialist physiotherapists, and most importantly in consultation with patients. The exercise programme was demonstrated to five boys with haemophilia and their parents. Children and parents were asked; what they thought about the exercises and whether they could undertake them on a regular basis, where they thought the best place was for undertaking them, and how they would like to receive information on the exercise programme. They were also asked questions about how they would feel about taking part in a study testing the benefits of the exercises, issues around being allocated randomly into study groups, and what would encourage the children to continue on the exercise programme. Results: Strong consensus from physiotherapists indicated the exercise programme should include exercises focused on strength, balance, proprioception, flexibility and mobility, and a motor learning component. Families noted the best place for the intervention being carried out was at home and that twice per week would be achievable. Parents felt that in order to sustain interest and motivation, it was important to build in an incentive that would be valued by the child. They also said that in order to find out whether or not the exercise programme worked, they would not have a problem with their child being allocated into an intervention or usual care groups. Discussion/Conclusion: Engaging clinicians and patients in partnership as part of the research process enhanced the design of an exercise intervention ensuring it is acceptable and potentially beneficial for children with chronic disorders. The efficacy of a 24-session progressive exercise programme of stretching, strengthening, balance, proprioceptive and mobility using functional movement patterns is currently being tested in a randomised controlled trial

    The Grizzly, September 27, 1985

    Get PDF
    Weight Room Draws a Crowd β€’ Why Alter the Campus Now? β€’ C.A.B Owns a New Name β€’ Letter: Allocate Athletic Funds β€’ CPP and Carla Rinde Can Show the Way β€’ Prof. Profile: Chambliss Keeps a Difficult Balance β€’Jeff Page: A Friendly Face in the Crowd β€’ Staiger\u27s Home Away From Home β€’ What\u27s Your Opinion? β€’ Search of Success β€’ Field Hockey Shoots to Top Ten Ranking β€’ Bears Split Two β€’ Cross Country Teams on Fire β€’ Barnes: Guarding is His Game β€’ Computer Lab Launchedhttps://digitalcommons.ursinus.edu/grizzlynews/1145/thumbnail.jp

    Protocol for a feasibility randomised controlled trial of a musculoskeletal exercise intervention versus usual care for children with haemophilia

    Get PDF
    Introduction: Haemophilia is a rare, inherited disorder in which blood does not clot normally, resulting in bleeding into joints and muscles. Long-term consequence is disabling joint pain, stiffness, muscle weakness, atrophy and reduced mobility. The purpose of this proposed feasibility of a randomised controlled trial (RCT) is to test the feasibility of an age-appropriate physiotherapy intervention designed to improve muscle strength, posture and the way boys use their joints during walking and everyday activities. Methods and analysis: A small-scale two-centre RCT of a 12-week muscle strengthening exercise intervention versus usual care for young children with haemophilia will be conducted. Primary outcomes will be safety and adherence to the exercise intervention. Secondary outcomes will include: recruitment, retention and adverse event rates, clinical data, muscle strength, joint biomechanics and foot loading patterns during walking, six-minute timed walk, timed-up-and-down-stairs, EQ-5D-Y, participants’ perceptions of the study, training requirements and relevant costs. Recruitment, follow-up, safety and adherence rates will be described as percentages. Participant diary and interview data will be analysed using a framework analysis. Demographic and disease variable distributions will be analysed for descriptive purposes and co-variant analysis. Estimates of differences between treatment arms (adjusted for baseline), and 75% and 95% confidence intervals will be calculated. Ethics and Dissemination: The study has ethical approval from the London - Fulham Research Ethics Committee (17/LO/2043) as well as Health Research Authority approval. As well as informing the design of the definitive trial, results of this study will be presented at local, national and international physiotherapy and haemophilia meetings as well as manuscripts submitted to peer-reviewed journals. We will also share the main findings of the study to all participants and the Haemophilia Society

    Autistic and Schizotypal Traits and Global Functioning in Bipolar I Disorder

    Get PDF
    Objective: To determine the expression of autistic and positive schizotypal traits in a large sample of adults with bipolar I disorder (BD-I), and the effect of co-occurring autistic and positive schizotypal traits on global functioning in BD-I. Method: Autistic and positive schizotypal traits were self-assessed in 797 individuals with BD-I recruited by the Bipolar Disorder Research Network. Differences in global functioning (rated using the Global Assessment Scale) during lifetime worst depressive and manic episodes (GASD and GASM respectively) were calculated in groups with high/low autistic and positive schizotypal traits. Regression analyses assessed the interactive effect of autistic and positive schizotypal traits on global functioning. Results: 47.2% (CI=43.7-50.7%) showed clinically significant levels of autistic traits, and 23.22% (95% CI=20.29-26.14) showed clinically significant levels of positive schizotypal traits. In the worst episode of mania, the high autistic, high positive schizotypal group had better global functioning compared to the other groups. Individual differences analyses showed that high levels of co-occurring traits were associated with better global functioning in both mood states. Limitations: Autistic and schizotypal traits were assessed using self-rated questionnaires. Conclusions: Expression of autistic and schizotypal traits in adults with BD-I is prevalent, and may be important to predict illness aetiology, prognosis, and diagnostic practices in this population. Future work should focus on replicating these findings in independent samples, and on the biological and/or psychosocial mechanisms underlying better global functioning in those who have high levels of both autistic and positive schizotypal traits

    The cost of severe haemophilia in Europe: the CHESS study

    Get PDF
    Background Severe haemophilia is associated with major psychological and economic burden for patients, caregivers, and the wider health care system. This burden has been quantified and documented for a number of European countries in recent years. However, few studies have taken a standardised methodology across multiple countries simultaneously, and sought to amalgamate all three levels of burden for severe disease. The overall aim of the β€˜Cost of Haemophilia in Europe: a Socioeconomic Survey’ (CHESS) study was to capture the annualised economic and psychosocial burden of severe haemophilia in five European countries. A cross-section of haemophilia specialists (surveyed between January and April 2015) provided demographic and clinical information and 12-month ambulatory and secondary care activity for patients via an online survey. In turn, patients provided corresponding direct and indirect non-medical cost information, including work loss and out-of-pocket expenses, as well as information on quality of life and adherence. The direct and indirect costs for the patient sample were calculated and extrapolated to population level. Results Clinical reports for a total of 1,285 patients were received. Five hundred and fifty-two patients (43% of the sample) provided information on indirect costs and health-related quality of life via the PSC. The total annual cost of severe haemophilia across the five countries for 2014 was estimated at EUR 1.4 billion, or just under EUR 200,000 per patient. The highest per-patient costs were in Germany (mean EUR 319,024) and the lowest were in the United Kingdom (mean EUR 129,365), with a study average of EUR 199,541. As expected, consumption of clotting factor replacement therapy represented the vast majority of costs (up to 99%). Indirect costs are driven by patient and caregiver work loss. Conclusions The results of the CHESS study reflect previous research findings suggesting that costs of factor replacement therapy account for the vast majority of the cost burden in severe haemophilia. However, the importance of the indirect impact of haemophilia on the patient and family should not be overlooked. The CHESS study highlights the benefits of observational study methodologies in capturing a β€˜snapshot’ of information for patients with rare diseases

    BHPR research: qualitative1. Complex reasoning determines patients' perception of outcome following foot surgery in rheumatoid arhtritis

    Get PDF
    Background: Foot surgery is common in patients with RA but research into surgical outcomes is limited and conceptually flawed as current outcome measures lack face validity: to date no one has asked patients what is important to them. This study aimed to determine which factors are important to patients when evaluating the success of foot surgery in RA Methods: Semi structured interviews of RA patients who had undergone foot surgery were conducted and transcribed verbatim. Thematic analysis of interviews was conducted to explore issues that were important to patients. Results: 11 RA patients (9 β™‚, mean age 59, dis dur = 22yrs, mean of 3 yrs post op) with mixed experiences of foot surgery were interviewed. Patients interpreted outcome in respect to a multitude of factors, frequently positive change in one aspect contrasted with negative opinions about another. Overall, four major themes emerged. Function: Functional ability & participation in valued activities were very important to patients. Walking ability was a key concern but patients interpreted levels of activity in light of other aspects of their disease, reflecting on change in functional ability more than overall level. Positive feelings of improved mobility were often moderated by negative self perception ("I mean, I still walk like a waddling duck”). Appearance: Appearance was important to almost all patients but perhaps the most complex theme of all. Physical appearance, foot shape, and footwear were closely interlinked, yet patients saw these as distinct separate concepts. Patients need to legitimize these feelings was clear and they frequently entered into a defensive repertoire ("it's not cosmetic surgery; it's something that's more important than that, you know?”). Clinician opinion: Surgeons' post operative evaluation of the procedure was very influential. The impact of this appraisal continued to affect patients' lasting impression irrespective of how the outcome compared to their initial goals ("when he'd done it ... he said that hasn't worked as good as he'd wanted to ... but the pain has gone”). Pain: Whilst pain was important to almost all patients, it appeared to be less important than the other themes. Pain was predominately raised when it influenced other themes, such as function; many still felt the need to legitimize their foot pain in order for health professionals to take it seriously ("in the end I went to my GP because it had happened a few times and I went to an orthopaedic surgeon who was quite dismissive of it, it was like what are you complaining about”). Conclusions: Patients interpret the outcome of foot surgery using a multitude of interrelated factors, particularly functional ability, appearance and surgeons' appraisal of the procedure. While pain was often noted, this appeared less important than other factors in the overall outcome of the surgery. Future research into foot surgery should incorporate the complexity of how patients determine their outcome Disclosure statement: All authors have declared no conflicts of interes

    Influenza vaccination for immunocompromised patients: systematic review and meta-analysis from a public health policy perspective.

    Get PDF
    Immunocompromised patients are vulnerable to severe or complicated influenza infection. Vaccination is widely recommended for this group. This systematic review and meta-analysis assesses influenza vaccination for immunocompromised patients in terms of preventing influenza-like illness and laboratory confirmed influenza, serological response and adverse events
    • …
    corecore