66 research outputs found

    Qualitative study exploring which research outcomes best reflect women's experiences of heavy menstrual bleeding: stakeholder involvement in development of a core outcome set

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    OBJECTIVE: This work contributed to the development of a core outcome set (COS) for heavy menstrual bleeding (HMB). The objective was to determine which research outcomes best reflect how HMB affects women's lives and to identify additional research outcomes, not previously reported. It was important to explore and record participants' reasoning for prioritising outcomes and use this information to reinforce the patients' voice during later phases of the COS development. DESIGN: Patient workshop discussions and telephone interviews. SETTING: East London teaching hospital. PARTICIPANTS: Inclusion criteria were that participants must be over 18 years old, that either they or their partner had a history of HMB and that they had a good understanding of written and spoken English. RESULTS: 41 participants were recruited for the study. 8 women and 1 man completed the study. The eight female participants were representative of the different underlying causes and treatments for HMB. Participants ranged in age from their early 20s to their 60s and represented a range of ethnic groups. The five main themes that were identified as being important to patients were: 'restriction', 'relationships and isolation', 'emotions and self-perception', 'pain' and 'perceptions of treatment'. We identified eight coding nodes that did not correspond with our list of previously reported outcomes in studies of HMB. These nodes were consolidated and became five new outcomes for potential inclusion in the COS. CONCLUSIONS: HMB stops women living their lives as they would wish. It affects their relationships, education, careers, reproductive wishes, social life and mental health. This is a condition of girls and women in the prime of their lives, but for many, the constant threat of a heavy period starting means that they sacrifice that freedom. The societal and economic costs of women being incapacitated every month has an effect on everyone. TRIAL REGISTRATION: The COS study is registered with the COMET (Core Outcome Measures in Effectiveness Trials) Initiative-project reference number 789

    A systematic literature review of Patient Reported Outcome Measures (PROMs) used in the assessment and measurement of sleep disorders in Chronic Obstructive Pulmonary Disease

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    BACKGROUND: Sleep problems are common in patients with chronic obstructive pulmonary disease (COPD), but the validity of patient-reported outcome measures (PROMs) that measure sleep dysfunction has not been evaluated. We have reviewed the literature to identify disease-specific and non-disease-specific sleep PROMs that have been validated for use in COPD patients. The review also examined the psychometric properties of identified sleep outcome measures and extracted point and variability estimates of sleep instruments used in COPD studies. METHODS: The online EMBASE, MEDLINE, PsycINFO, and SCOPUS databases for all years to May 2014 were used to source articles for the review. The review was performed according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Criteria from the Medical Outcomes Trust Scientific Advisory Committee guidelines were used to evaluate the psychometric properties of all sleep PROMs identified. RESULTS: One COPD-specific and six non-COPD-specific sleep outcome measures were identified and 44 papers met the review selection criteria. We only identified one instrument, the COPD and Asthma Sleep Impact Scale, which was developed specifically for use in COPD populations. Ninety percent of the identified studies used one of two non-disease-specific sleep scales, ie, the Pittsburgh Sleep Quality Index and/or the Epworth Sleep Scale, although neither has been tested for reliability or validity in people with COPD. CONCLUSION: The results highlight a need for existing non-disease-specific instruments to be validated in COPD populations and also a need for new disease-specific measures to assess the impact of sleep problems in COPD

    Attachment in individuals with eating disorders compared to community controls: A systematic review and meta-analysis

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    OBJECTIVE: Individuals with eating disorders are known to have higher rates of insecure attachment compared to community controls, but the factors underlying this finding are poorly understood. We conducted the first meta-analysis comparing attachment in eating disorder samples compared to community controls that included quality assessment, publication bias and moderation analysis. METHOD: We pre-registered our meta-analysis (CRD42019146799) and followed PRISMA guidelines. We searched PsychINFO, Embase, Medline, CINAHL, and Scopus for publications. Attachment scores were extracted, and Cohen's d calculated for each study using a random effects model. RESULTS: In total, 35 studies were included in the meta-analysis and six studies were summarized in a narrative review. Eating disorder samples showed higher rates of insecure attachment compared to community controls, with a large effect size, across measurement methods and different attachment dimensions. Blinding of assessors moderated effect sizes for attachment interview studies, but no other moderators were significant. DISCUSSION: Risk of insecure attachment is elevated in individuals with eating disorders, albeit heterogeneity is high and largely unexplained. Clinicians may need to take this into account in their work, particularly given the association between attachment insecurity and challenges to therapeutic alliance. Future studies comparing eating disorder samples with community samples should control for general psychopathology. PUBLIC SIGNIFICANCE: Attachment is a broad concept referring to a person's thoughts, feelings and behaviors in relation to close others. This systematic review and meta-analysis found that individuals with eating disorders are lower in attachment security than community controls, regardless of attachment construct or measurement approach. Attachment may be relevant in influencing eating disorder recovery, the development of therapeutic alliance, and potentially clinical outcomes, although more research is needed

    UPR Project at BCU USA Stakeholder Report

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    In this submission, we encourage the US to commit to improving its human rights protection and promotion by engaging meaningfully with the third cycle of the UPR in 2020. This includes giving full and practical consideration to all recommendations made by Member States, effectively implementing the recommendations the US accepts, and actively engaging with civil society throughout the process. This Stakeholder submission focuses upon three themes: a. Capital punishment; b. Climate change and greenhouse gas emissions; and, c. Compassionate release from prison

    Radiative equilibrium in Monte Carlo radiative transfer using frequency distribution adjustment

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    The Monte Carlo method is a powerful tool for performing radiative equilibrium calculations, even in complex geometries. The main drawback of the standard Monte Carlo radiative equilibrium methods is that they require iteration, which makes them numerically very demanding. Bjorkman & Wood recently proposed a frequency distribution adjustment scheme, which allows radiative equilibrium Monte Carlo calculations to be performed without iteration, by choosing the frequency of each re-emitted photon such that it corrects for the incorrect spectrum of the previously re-emitted photons. Although the method appears to yield correct results, we argue that its theoretical basis is not completely transparent, and that it is not completely clear whether this technique is an exact rigorous method, or whether it is just a good and convenient approximation. We critically study the general problem of how an already sampled distribution can be adjusted to a new distribution by adding data points sampled from an adjustment distribution. We show that this adjustment is not always possible, and that it depends on the shape of the original and desired distributions, as well as on the relative number of data points that can be added. Applying this theorem to radiative equilibrium Monte Carlo calculations, we provide a firm theoretical basis for the frequency distribution adjustment method of Bjorkman & Wood, and we demonstrate that this method provides the correct frequency distribution through the additional requirement of radiative equilibrium. We discuss the advantages and limitations of this approach, and show that it can easily be combined with the presence of additional heating sources and the concept of photon weighting. However, the method may fail if small dust grains are included... (abridged)Comment: 17 pages, 2 figures, accepted for publication in New Astronom

    Threonine 57 is required for the post-translational activation of Escherichia coli aspartate α-decarboxylase.

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    Aspartate α-decarboxylase is a pyruvoyl-dependent decarboxylase required for the production of β-alanine in the bacterial pantothenate (vitamin B5) biosynthesis pathway. The pyruvoyl group is formed via the intramolecular rearrangement of a serine residue to generate a backbone ester intermediate which is cleaved to generate an N-terminal pyruvoyl group. Site-directed mutagenesis of residues adjacent to the active site, including Tyr22, Thr57 and Tyr58, reveals that only mutation of Thr57 leads to changes in the degree of post-translational activation. The crystal structure of the site-directed mutant T57V is consistent with a non-rearranged backbone, supporting the hypothesis that Thr57 is required for the formation of the ester intermediate in activation

    Bridging the Divide:The adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers

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    The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through
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