324 research outputs found

    The Professional Support Needs and Experiences of Patients with Atrial Fibrillation: a Mixed Methods Study

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    There are in excess of one million people across the UK people living with atrial fibrillation (AF), a long term condition that can lead to stroke and other complications, costing the NHS over £2,200 million per year. However little is known about the experience of living with AF and what patients’ perceptions are of the support they receive from health professionals. In order to ensure that patients have the best possible experience of care, healthcare professionals need to have an understanding of how patients view their condition and the type of support they would like to receive from the professionals involved in their care. Although there has been a significant amount of work investigating social support for people with health conditions, there has been little work exploring support provided by healthcare professionals, defined in this study as professional support. This study aimed to investigate and assess the professional support needs of people with AF to develop knowledge and understanding in this field. A theoretical framework for professional support was developed based on the tri-dimensional model of social support and was used to direct the research. Using an exploratory sequential design, a two phase mixed methods study was undertaken. Initially, qualitative interviews were undertaken with patients recruited from outpatient arrhythmia clinics at one National Health Service (NHS) hospital and identified from the perspective of the patient how, when and where healthcare professionals did/did not provide support. Key components of emotional, informational and tangible professional support were identified from thematic analysis of the interview data and used to inform the development of a quantitative questionnaire. Physical activity, exercise and the impact of AF on activity levels were identified by participants as important and so were also included. The quantitative online questionnaire was completed by patient members of the Atrial Fibrillation Association (AFA). To examine relationships between variables, statistical analyses were performed using Fisher’s exact test and indicated that people with AF had a range of emotional, informational and tangible professional support needs. Different subgroups of people with AF had different professional support needs: People with more severe symptoms needed more emotional support as well as more tangible support and people with paroxysmal AF needed more informational support. People undergoing ablation as treatment for their AF had specific informational and emotional needs for support. AF played a significant part in the lives of people with AF by modifying activities of daily living and shaping physical activity behaviour and choice of activities. People with AF therefore needed professional support in maintaining and/or increasing their levels of activity. Considering the specificity of professional support, GPs, cardiologists and arrhythmia nurse specialists were identified as most supportive, with GPs and cardiologists also considered as the least helpful at providing support, indicating a variation in professional support. The findings from this study contribute to the limited body of knowledge describing the experience of living with AF and provide healthcare professionals with a unique understanding of how best to provide professional support. The tri-dimensional model provides detailed knowledge of the components of informational, emotional and tangible support that people with AF would like to receive from the healthcare professionals involved in their care. The findings indicate there are differing support needs for different subsets of people with AF demonstrating a need for individualised professional support. The theoretical framework for professional support used in this study provides a model that could be used in future research studies to identify the types of professional support required by patients and to identify subgroups of patients who may require additional professional support. By accurately identifying the needs of patients, this will ensure that healthcare professionals are able to deliver effective patient centred services, leading to an improved patient experience and the delivery of high quality patient care

    Self-injurious behaviour in people with Prader-Willi syndrome

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    Volume one contains a systematic literature review, an empirical chapter and a public domain briefing. The review explored the phenomenology of skin picking (a self-injurious behaviour) in people with Prader-Willi syndrome (PWS). A number of characteristics were well described with some areas of limited research, e.g. frequency and duration. Skin picking in people with PWS and in the typically developing population was compared showing that there were more similarities than differences. The empirical chapter further explored the phenomenology of skin picking in people with PWS and associated management techniques by using a semi-structured interview. Informants reported on the age of onset, frequency and duration of skin picking, type of skin picked, damage caused, antecedents and the influence of pain. The most common management strategy used by parents and carers was distraction and the majority of participants with PWS did not have their own management strategy to try to reduce skin picking. Results of both chapters are discussed within the context of previous research and the clinical implications are considered

    Towards a Low-Cost Clinical Multiple Mutation Diagnostic: Cystic Fibrosis as a Model

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    Cystic fibrosis is used in this work as an example of a genetic disease where early diagnosis and medical intervention can improve quality of life. Current methods of cystic fibrosis diagnosis rely heavily on the sweat test, a biochemical method of measuring the concentration of sodium and chloride in sweat. A repeat test is required for sodium levels between 40 and 70 mmol per litre, which may occur in babies with either mild or no cystic fibrosis. The advantage of a DNA test is that a cut off value is not necessary, this reduces false positive and negative results. A mutation is either present in a person’s DNA or it is absent. Cystic fibrosis has been associated with over 500 mutations, therefore a type of mutation detection was investigated which could potentially examine a large proportion of these in one test. A simple, low cost method of mutation detection is required for use within the National Health Service. The reverse dot blot hybridisation allows a known sequence of DNA to be placed on a membrane (mutant and wild type) and hybridised with an unknown sequence (patients’ DNA). Covalent coupling of oligonucleotides to membrane produced increased attachment over physical attachment as examined via radioactive labels. Polystyrene slides were chemically modified (using 5% potassium permanganate in 1.2M H2SO4) to provide carboxyl groups for the covalent attachment of amino terminated oligonucleotides. Human DNA was amplified by PCR, labelled with biotin and detected via chemiluminescence. Genomic DNA was extracted from blood samples with the Qiagen QIAamp system and both wild type and mutant sequences were amplified. Hybridisations were performed on nylon membranes and modified polystyrene slides. Hybridisation was specific at high stringency (0.1%SDS/0.1xSSC). Further work is required to produce a prototype diagnostic device.Ph

    Maximising engagement, motivation and long term change in a Structured Intensive Education Programme in Diabetes for children, young people and their families: Child and Adolescent Structured Competencies Approach to Diabetes Education (CASCADE).

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    BACKGROUND: This trial aims to evaluate effective delivery and cost effectiveness of an innovative structured psycho-educational programme (CASCADE) for young people and their families living with diabetes. The increase in numbers of people being diagnosed with diabetes is posing a challenge for both the UK and the rest of the world. The peak age for diagnosis is between 10 and 14 years of age. There is clear evidence that improved diabetes control from diagnosis in childhood can reduce the incidence and progression of long-term complications. However, despite the development of improved insulin regimens and delivery methods, the overall metabolic control in children and adolescents has improved little in the UK in the past decade. Therefore there is a need for novel interventions and health delivery mechanisms aimed at young people and their families to help improve control and reduce complications, illness burden and costs to the NHS. METHODS/DESIGN: The CASCADE trial is a multi-centre randomised control trial with 26 clinics randomised to control or intervention groups, with 572 children and young people involved in the study. The intervention will be delivered in 4 group sessions, over a 4 month period. A developmentally appropriate curriculum will be delivered to groups of 3 - 4 families, focusing on achievement of increasing competency in self-management of diabetes. The control group will receive standard care from their clinical team, usually consisting of regular 3-monthly clinic visits and telephone contact as required with the clinical nurse specialist and consultant. The primary outcomes of the trial will be change in HbA1c between baseline and 12 months and 24 months post recruitment. Secondary outcomes will include measures related to the economic evaluation, psychosocial outcomes, outcomes related to management of diabetes outcomes, and adherence to the intervention. DISCUSSION: The trial will be run by independent research and service delivery teams and supervised by a trial steering committee. A data monitoring and ethics committee has been put in place to monitor the trial and recommend stopping/continuation according to a Peto-Haybittle rule. The trial will be conducted according to the principles of MRC Good Clinical Practice (GCP) Guidelines and CTRU Phase III Trial Standard Operating procedures. TRIAL REGISTRATION: Current Controlled Trials ISRCTN52537669

    W(h)ither Fossils? Studying Morphological Character Evolution in the Age of Molecular Sequences

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    A major challenge in the post-genomics era will be to integrate molecular sequence data from extant organisms with morphological data from fossil and extant taxa into a single, coherent picture of phylogenetic relationships; only then will these phylogenetic hypotheses be effectively applied to the study of morphological character evolution. At least two analytical approaches to solving this problem have been utilized: (1) simultaneous analysis of molecular sequence and morphological data with fossil taxa included as terminals in the analysis, and (2) the molecular scaffold approach, in which morphological data are analyzed over a molecular backbone (with constraints that force extant taxa into positions suggested by sequence data). The perceived obstacles to including fossil taxa directly in simultaneous analyses of morphological and molecular sequence data with extant taxa include: (1) that fossil taxa are missing the molecular sequence portion of the character data; (2) that morphological characters might be misleading due to convergence; and (3) character weighting, specifically how and whether to weight characters in the morphological partition relative to characters in the molecular sequence data partition. The molecular scaffold has been put forward as a potential solution to at least some of these problems. Using examples of simultaneous analyses from the literature, as well as new analyses of previously published morphological and molecular sequence data matrices for extant and fossil Chiroptera (bats), we argue that the simultaneous analysis approach is superior to the molecular scaffold approach, specifically addressing the problems to which the molecular scaffold has been suggested as a solution. Finally, the application of phylogenetic hypotheses including fossil taxa (whatever their derivation) to the study of morphological character evolution is discussed, with special emphasis on scenarios in which fossil taxa are likely to be most enlightening: (1) in determining the sequence of character evolution; (2) in determining the timing of character evolution; and (3) in making inferences about the presence or absence of characteristics in fossil taxa that may not be directly observable in the fossil record. Published By: Missouri Botanical Garde

    Hormone replacement therapy and false positive recall in the Million Women Study: patterns of use, hormonal constituents and consistency of effect

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    INTRODUCTION: Current and recent users of hormone replacement therapy (HRT) have an increased risk of being recalled to assessment at mammography without breast cancer being diagnosed ('false positive recall'), but there is limited information on the effects of different patterns of HRT use on this. The aim of this study is to investigate in detail the relationship between patterns of use of HRT and false positive recall. METHODS: A total of 87,967 postmenopausal women aged 50 to 64 years attending routine breast cancer screening at 10 UK National Health Service Breast Screening Units from 1996 to 1998 joined the Million Women Study by completing a questionnaire before screening and were followed for their screening outcome. RESULTS: Overall, 399 (0.5%) participants were diagnosed with breast cancer and 2,629 (3.0%) had false positive recall. Compared to never users of HRT, the adjusted relative risk (95% CI) of false positive recall was: 1.62 (1.43–1.83), 1.80 (1.62–2.01) and 0.76 (0.52–1.10) in current users of oestrogen-only HRT, oestrogen-progestagen HRT and tibolone, respectively (p (heterogeneity) < 0.0001); 1.65 (1.43–1.91), 1.49 (1.22–1.81) and 2.11 (1.45–3.07) for current HRT used orally, transdermally or via an implant, respectively (p (heterogeneity) = 0.2); and 1.84 (1.67–2.04) and 1.75 (1.49–2.06) for sequential and continuous oestrogen-progestagen HRT, respectively (p (heterogeneity) = 0.6). The relative risk of false positive recall among current users appeared to increase with increasing time since menopause, but did not vary significantly according to any other factors examined, including duration of use, hormonal constituents, dose, whether single- or two-view screening was used, or the woman's personal characteristics. CONCLUSION: Current use of oestrogen-only and oestrogen-progestagen HRT, but not tibolone, increases the risk of false positive recall at screening

    A sampling-based approach for information-theoretic inspection management

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    A partially supervised approach to Structural Health Monitoring is proposed, to manage the cost associated with expert inspections and maximize the value of monitoring regimes. Unlike conventional data-driven procedures, the monitoring classifier is learnt online while making predictions—negating the requirement for complete data before a system is in operation (which are rarely available). Most critically, periodic inspections are replaced (or enhanced) by an automatic inspection regime, which only queries measurements that appear informative to the evolving model of the damage-sensitive features. The result is a partially supervised Dirichlet process clustering that manages expert inspections online given incremental data. The method is verified on a simulated example and demonstrated on in situ bridge monitoring data
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