11 research outputs found

    Data Resource Profile: Clinical Practice Research Datalink (CPRD).

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    The Clinical Practice Research Datalink (CPRD) is an ongoing primary care database of anonymised medical records from general practitioners, with coverage of over 11.3 million patients from 674 practices in the UK. With 4.4 million active (alive, currently registered) patients meeting quality criteria, approximately 6.9% of the UK population are included and patients are broadly representative of the UK general population in terms of age, sex and ethnicity. General practitioners are the gatekeepers of primary care and specialist referrals in the UK. The CPRD primary care database is therefore a rich source of health data for research, including data on demographics, symptoms, tests, diagnoses, therapies, health-related behaviours and referrals to secondary care. For over half of patients, linkage with datasets from secondary care, disease-specific cohorts and mortality records enhance the range of data available for research. The CPRD is very widely used internationally for epidemiological research and has been used to produce over 1000 research studies, published in peer-reviewed journals across a broad range of health outcomes. However, researchers must be aware of the complexity of routinely collected electronic health records, including ways to manage variable completeness, misclassification and development of disease definitions for research.LS is supported by a Wellcome Trust Senior Research Fellowship in Clinical Science grant number 098504/Z/12/Z

    Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

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    <p>Abstract</p> <p>Background</p> <p>NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses' understanding and beliefs about CFS/ME and its management.</p> <p>Methods</p> <p>Semi-structured interviews with 29 Practice Nurses. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.</p> <p>Results</p> <p>Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition. They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling would be an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues. Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care.</p> <p>Conclusion</p> <p>The current role of Practice Nurses in the ongoing management of patients with CFS/ME is limited. Practice Nurses have little understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.</p

    Multi-system neurological disease is common in patients with OPA1 mutations

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    Additional neurological features have recently been described in seven families transmitting pathogenic mutations in OPA1, the most common cause of autosomal dominant optic atrophy. However, the frequency of these syndromal ‘dominant optic atrophy plus’ variants and the extent of neurological involvement have not been established. In this large multi-centre study of 104 patients from 45 independent families, including 60 new cases, we show that extra-ocular neurological complications are common in OPA1 disease, and affect up to 20% of all mutational carriers. Bilateral sensorineural deafness beginning in late childhood and early adulthood was a prominent manifestation, followed by a combination of ataxia, myopathy, peripheral neuropathy and progressive external ophthalmoplegia from the third decade of life onwards. We also identified novel clinical presentations with spastic paraparesis mimicking hereditary spastic paraplegia, and a multiple sclerosis-like illness. In contrast to initial reports, multi-system neurological disease was associated with all mutational subtypes, although there was an increased risk with missense mutations [odds ratio = 3.06, 95% confidence interval = 1.44–6.49; P = 0.0027], and mutations located within the guanosine triphosphate-ase region (odds ratio = 2.29, 95% confidence interval = 1.08–4.82; P = 0.0271). Histochemical and molecular characterization of skeletal muscle biopsies revealed the presence of cytochrome c oxidase-deficient fibres and multiple mitochondrial DNA deletions in the majority of patients harbouring OPA1 mutations, even in those with isolated optic nerve involvement. However, the cytochrome c oxidase-deficient load was over four times higher in the dominant optic atrophy + group compared to the pure optic neuropathy group, implicating a causal role for these secondary mitochondrial DNA defects in disease pathophysiology. Individuals with dominant optic atrophy plus phenotypes also had significantly worse visual outcomes, and careful surveillance is therefore mandatory to optimize the detection and management of neurological disability in a group of patients who already have significant visual impairment

    日本再保險市場の構成 - 保險アウタルキーの問題に關聯して -

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    Aims: To determine the cultural competence of diabetes services delivered to ethnic minority populations in a multicultural UK city with 4.3% diabetes prevalence. Methods: A semi-structured survey comprising 35 questions, was carried out across all 66 General Practices in Coventry between November 2011 and January 2012. Data were analysed using descriptive statistics. The cultural competence of diabetes services reported in the survey was assessed using the Culturally-Competent Assessment Tool (CCAT). Results: Thirty-four practices (52%) responded. Six important findings emerged across the practices that responded: (1) 94% of general practices reported the ethnicity of their populations. (2) One in three people with diabetes was from an ethnic minority group. (3) Nine (26.5%) practices reported between 55%-96% diabetes prevalence in ethnic minority groups. (4) Cultural competence of diabetes services were assessed using CCAT; 56% of practices were found to be highly culturally-competent and 26% moderately culturally-competent. (5) Ten practices (29%) reported higher proportionate attendance of diabetes annual checks in the majority white British population compared to ethnic minority groups. (6) Cultural diversity in relation to language and strong cultural traditions around food were most commonly reported as barriers to culturally-competent service delivery. Conclusions: Seven of the eight cultural barriers identified in the global evidence were present in the city. Use of the CCAT to assess existing service provision and the good baseline recording of ethnicity provide a sound basis for commissioning culturally-competent interventions in the future

    A training package for primary care nurses in conducting medication reviews: Their views and the resultant outputs

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    Aims. To ascertain nurses' views about training in and undertaking of medication reviews and to analyse documented pharmaceutical care issues (PCI) and outputs from nurse reviews. Background. Primary-care nurses in the UK are increasingly expected to contribute effectively to chronic disease management for example by undertaking medication reviews. There are concerns that nurse education is inadequate for these new roles. Little research is published about nurse medication reviews. A pilot study in one Scottish medical practice demonstrated that, after training in systematic medication review, practice-based nurses could identify medication-related problems. The training, consisting of reading material, including self-assessment questions and a training event, was subsequently offered to all practice-based nurses in the Community Health Partnership (CHP); participants then undertook six reviews to achieve CHP accreditation. Design. Survey of participant nurses and analysis of completed documentation from reviews. Methods. A self-completion, postal questionnaire distributed three months post-training. Analysis of documentation from reviews for PCI and outputs. Results. Eighty-one nurses were offered training: 64 (79%) participated; 38 (59%) returned questionnaires. Low confidence levels before training (0, very confident; 6, 16% confident) rose afterwards (8, 21% very confident; 19, 50% confident). Thirty-two (84%) nurses indicated the training had completely or mostly met their needs. A total of 120 nurse reviews were analysed and 188 PCI documented, mean 1·6/patient, with 117 outputs, mean 1·0/patient. Twenty-seven outputs (23%) involved prescribed medicine changes. Conclusions. A pharmacist-supported training package in medication reviews for primary-care nurses is feasible and generally welcome. The training met the needs of most respondents although concerns were expressed regarding time pressures and knowledge base for extended roles. Relevance to clinical practice. Medication reviews are vitally important for both patients and the NHS; this approach may be useful for nurse prescribers and non-prescribers alike although concerns expressed will require attention
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