36 research outputs found

    'A group of totally awesome people who do stuff' - a qualitative descriptive study of a children and young people's patient and public involvement endeavour.

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    BACKGROUND: In 2013, the Cambridge Clinical Research Facility (CCRF) set up a Children's Non-Executive Research Board to advise on service and facility development and research involving children and young people (CYP). In 2015, the Children's Experiences of Engaging in Research study (CHEER) was conceived to explore the Children's Board as a patient and public involvement initiative. AIM: To explore the views of CYP, staff and parents involved in the Children's Board with the view to describe their experiences of the selected mechanism of involvement (Children's Board) within the context of operation (CCRF). METHODS: A qualitative descriptive methodology involving qualitative content analysis of semi-structured interviews was used to derive descriptive summaries of the interview data. SETTING AND PARTICIPANTS: Interviews were carried out with staff (n = 5), children (n = 2) and parents (n = 2) who participated in the first or second Children's Board meetings. RESULTS: Twelve descriptive summaries emerged: (1) CCRF 'role' perspective (2) purpose, remit and future direction (3) aspirations (4) learning as reciprocation (5) regular meetings, contact and feedback (6) expectation setting and ground rules (7) culture of PPI (8) surprise, underestimation and self-selection (9) reciprocity, incentivisation and participation (10) practicalities, timing and barriers (11) parental roles (12) event structure. These highlighted the importance of selecting the right mechanism of involvement in relation to context for involvement and the reductive biases adults and healthcare providers may unconsciously hold. Both of these aspects may affect the efficacy of PPI endeavours with CYP. DISCUSSION AND CONCLUSIONS: Mechanisms by which CYP are involved in research should be considered from the outset; taking into consideration both the setting and contextual features. Contextual and process factors important in the adult PPI realm were generally observed in this PPI initiative with CYP; however further research is required to explore unconscious biases and reductive perceptions in adult facilitators

    Heart failure disease management: a systematic review of effectiveness in heart failure with preserved ejection fraction.

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    AIMS: Heart failure with preserved ejection fraction (HFpEF) poses a substantial challenge for clinicians, but there is little guidance for effective management. The aim of this systematic review was to determine if there was evidence that disease management programmes (DMPs) improved outcomes for patients with HFpEF. METHODS AND RESULTS: A systematic review of controlled studies in English or Greek of DMPs including patients with HFpEF from 2008 to 2018 was conducted using CINAHL, Cochrane, MEDLINE, and Embase. Interventions were assessed using a DMP taxonomy and scored for complexity and intensity. Bias was assessed using the Cochrane Collaboration tool. Initial and updated searches found 6089 titles once duplicates were removed. The final analysis included 18 studies with 5435 HF patients: 1866 patients (34%, study ranges 18-100%) had potential HFpEF (limited by variable definitions). Significant heterogeneity in terms of the population, intervention, comparisons, and outcomes prohibited meta-analysis. Statistically significant or positive trends were found in mortality, hospitalization rates, self-care ability, quality of life, anxiety, depression, and sleep, but findings were not robust or consistent. Four studies reported results separately for study-defined HFpEF, with two finding less positive effect on outcomes. CONCLUSIONS: Varying definitions of HFpEF used in studies are a substantial limitation in interpretation of findings. The reduced efficacy noted in contemporary HF DMP studies may not only be due to improvements in usual care but may also reflect inclusion of heterogeneous patients with HFpEF or HF with mid-range EF who may not respond in the same way as HFrEF to individual components. Given that patients with HFpEF are older and multi-morbid, DMPs targeting HFpEF should not rely on a single-disease focus but provide care that addresses predisposing and presentation phenotypes and draws on the principles of comprehensive geriatric assessment. Other components could also be more targeted to HFpEF such as modification of lifestyle factors for which there is emerging evidence, rather than simply continuing the model of care used in HFrEF. Based on current evidence, HF DMPs may improve mortality, hospitalization rates, self-care, and quality of life in patients with HFpEF; however, further research specifically tailored to appropriately defined HFpEF is required.NIHR School for Primary Care Research European Society of Cardiology Nurse Training Gran

    Optimising Management of Patients with Heart Failure with Preserved Ejection Fraction in Primary Care (OPTIMISE-HFpEF): rationale and protocol for a multi-method study.

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    BACKGROUND: Heart failure with preserved ejection fraction (HFpEF) is less well understood than heart failure with reduced ejection fraction (HFrEF), with greater diagnostic difficulty and management uncertainty. AIM: The primary aim is to develop an optimised programme that is informed by the needs and experiences of people with HFpEF and healthcare providers. This article presents the rationale and protocol for the Optimising Management of Patients with Heart Failure with Preserved Ejection Fraction in Primary Care (OPTIMISE-HFpEF) research programme. DESIGN & SETTING: This is a multi-method programme of research conducted in the UK. METHOD: OPTIMISE-HFpEF is a multi-site programme of research with three distinct work packages (WPs). WP1 is a systematic review of heart failure disease management programmes (HF-DMPs) tested in patients with HFpEF. WP2 has three components (a, b, c) that enable the characteristics, needs, and experiences of people with HFpEF, their carers, and healthcare providers to be understood. Qualitative enquiry (WP2a) with patients and providers will be conducted in three UK sites exploring patient and provider perspectives, with an additional qualitative component (WP2c) in one site to focus on transitions in care and carer perspectives. A longitudinal cohort study (WP2b), recruiting from four UK sites, will allow patients to be characterised and their illness trajectory observed across 1 year of follow-up. Finally, WP3 will synthesise the findings and conduct work to gain consensus on how best to identify and manage this patient group. RESULTS: Results from the four work packages will be synthesised to produce a summary of key learning points and possible solutions (optimised programme) which will be presented to a broad spectrum of stakeholders to gain consensus on a way forward. CONCLUSION: HFpEF is often described as the greatest unmet need in cardiology. The OPTIMISE-HFpEF programme aims to address this need in primary care, which is arguably the most appropriate setting for managing HFpEF.NIHR National School for Primary Care Researc

    Hybridisation rates, population structure, and dispersal of sambar deer (Cervus unicolor) and rusa deer (Cervus timorensis) in south-eastern Australia

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    Context. Introduced populations of sambar deer (Cervus unicolor) and rusa deer (Cervus timorensis) are present across south-eastern Australia and are subject to local population control to alleviate their negative impacts. For management to be effective, identification of dispersal capability and management units is necessary. These species also readily hybridise, so additional investigation of hybridisation rates across their distributions is necessary to understand the interactions between the two species. Aims. Measure the hybridisation rate of sambar and rusa deer, assess broad-scale population structure present within both species and identify distinct management units for future population control, and measure the likely dispersal capability of both species. Methods. In total, 198 sambar deer, 189 rusa deer, and three suspected hybrid samples were collected across Victoria and New South Wales (NSW). After sequencing and filtering, 14 099 polymorphic single-nucleotide polymorphism (SNP) markers were retained for analysis. Hybridisation rates were assessed before the data were split by species to identify population structure, diversity indices, and dispersal distances. Key results. Across the entire dataset, 17 hybrids were detected. Broad-scale population structure was evident in sambar deer, but not among the sites where rusa deer were sampled. Analysis of dispersal ability showed that a majority of deer movement occurred within 20 km in both species, suggesting limited dispersal. Conclusions. Distinct management units of sambar deer can be identified from the dataset, allowing independent population control. Although broad-scale population structure was not evident in the rusa deer populations, dispersal limits identified suggest that rusa deer sites sampled in this study could be managed separately. Sambar × rusa deer hybrids are present in both Victoria and NSW and can be difficult to detect on the basis of morphology alone. Implications. Genetic analysis can identify broad-scale management units necessary for population control, and estimates of dispersal capability can assist in delineating management units where broad-scale population structure may not be apparent. The negative impacts associated with hybridisation require further investigation to determine whether removal of hybrids should be considered a priority management aim. © 2023 The Author(s) (or their employer(s)). Published by CSIRO Publishing

    Failure of sucrose replacement with the non-nutritive sweetener erythritol to alter GLP-1 or PYY release or test meal size in lean or obese people.

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    There is considerable interest in the effect of foods containing high intensity sweeteners on satiation. However, less is known about low-calorie bulk sweeteners such as erythritol. In this randomized three-way crossover study, we studied 10 lean and 10 obese volunteers who consumed three test meals on separate occasions: (a) control sucrose meal; (b) isovolumic meal with partial replacement of sucrose by erythritol; (c) isocaloric meal which contained more erythritol but equivalent calories to the control meal. We measured gut hormone levels, hunger and satiety scores, ad libitum food intake, sucrose preference and intake after the manipulations. There was a greater post-prandial excursion in glucose and insulin levels after sucrose than after the erythritol meals. There was no difference in GLP-1/PYY levels or subsequent energy intake and sucrose preference between sucrose control and isovolumic erythritol meals. In lean (but not obese) participants, hunger decreased to a greater extent after the isocaloric erythritol meal compared to the control meal (p = 0.003) reflecting the larger volume of this meal. Replacing sucrose with erythritol leads to comparable hunger and satiety scores, GLP-1 and PYY levels, and subsequent sucrose preference and intake.Wellcome Trust, National Institute for Health Research Cambridge Biomedical Research Centre, Bernard Wolfe Health Neuroscience Fund, Swiss National Science Foundation (Grant IDs: PBLAP3-145870, P3SMP3-155318), NeuroFAST consortium, European Union's Seventh Framework Programme (FP7/ 2007e2013) Grant ID: 245009), Cargill, Sas van Gent, The NetherlandsThis is the final version of the article. It first appeared from Elsevier via http://dx.doi.org/10.1016/j.appet.2016.09.00

    Diagnosis of patients with heart failure with preserved ejection fraction in primary care : Cohort study

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    Aims Heart failure with preserved ejection fraction (HFpEF) accounts for half of all heart failure (HF), but low awareness and diagnostic challenges hinder identification in primary care. Our aims were to evaluate the recruitment and diagnostic strategy in the Optimise HFpEF cohort and compare with recent recommendations for diagnosing HFpEF. Methods and results Patients were recruited from 30 primary care practices in two regions in England using an electronic screening algorithm and two secondary care sites. Baseline assessment collected clinical and patient-reported data and diagnosis by history, assessment, and trans-thoracic echocardiogram (TTE). A retrospective evaluation compared study diagnosis with H2FPEF score and HFA-PEFF diagnostic algorithm. A total of 152 patients (86% primary care, mean age 78.5, 40% female) were enrolled; 93 (61%) had HFpEF confirmed. Most participants had clinical features of HFpEF, but those with confirmed HFpEF were more likely female, obese, functionally impaired, and symptomatic. Some echocardiographic findings were diagnostic for HFpEF, but no difference in natriuretic peptide levels were observed. The H2FPEF and HFA-PEFF scores were not significantly different by group, although confirmed HFpEF cases were more likely to have scores indicating high probability of HFpEF. Conclusions Patients with HFpEF in primary care are difficult to identify, and greater awareness of the condition, with clear diagnostic pathways and specialist support, are needed. Use of diagnostic algorithms and scores can provide systematic approaches to diagnosis but may be challenging to apply in older multi-morbid patients. Where diagnostic uncertainty remains, pragmatic decisions are needed regarding the value of additional testing versus management of presumptive HFpEF

    Mild traumatic brain injury recovery: a growth curve modelling analysis over 2 years

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    Background: An improved understanding of the trajectory of recovery after mild traumatic brain injury is important to be able to understand individual patient outcomes, for longitudinal patient care and to aid the design of clinical trials. Objective: To explore changes in health, well-being and cognition over the 2 years following mTBI using latent growth curve (LGC) modelling. Methods Sixty-one adults with mTBI presenting to a UK Major Trauma Centre completed comprehensive longitudinal assessment at up to five time points after injury: 2 weeks, 3 months, 6 months, 1 year and 2 years. Results: Persisting problems were seen with neurological symptoms, cognitive issues and poor quality of life measures including 28% reporting incomplete recovery on the Glasgow Outcome Score Extended at 2 years. Harmful drinking, depression, psychological distress, disability, episodic memory and working memory did not improve significantly over the 2 years following injury. For other measures, including the Rivermead Post-Concussion Symptoms and Quality of Life after Brain Injury (QOLIBRI), LGC analysis revealed significant improvement over time with recovery tending to plateau at 3-6 months. Interpretation Significant impairment may persist as late as 2 years after mTBI despite some recovery over time. Longitudinal analyses which make use of all available data indicate that recovery from mTBI occurs over a longer timescale than is commonly believed. These findings point to the need for long-term management of mTBI targeting individuals with persisting impairment.</div
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