203 research outputs found

    Takayasu arteritis in childhood: retrospective experience from a tertiary referral centre in the United Kingdom.

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    Takayasu arteritis (TA) is an idiopathic large-vessel vasculitis affecting the aorta and its major branches. Although the disease rarely affects children, it does occur, even in infants. The objective of this study was to evaluate the clinical features, disease activity, treatment and outcome of childhood TA in a tertiary UK centre

    Health within the Leeds Roma Community: Final Report

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    This report illustrates the findings from a piece of health-related research carried out within the Roma community in Leeds in 2012. The research aimed to explore Roma community member’s health status and associated health needs. Based upon data gathered from questionnaires and focus groups with Roma community members and interview data from health professionals working with them, this report presents evidence from the data gathered. The findings reported here relate to the migrant population of Roma resident within the UK, not the indigenous Gypsy and Traveller population of the UK. UK and Irish Travellers, despite sharing common experiences to the Roma in terms of discrimination and exclusion, are a distinct community and are not of Roma origin and thus are not the focus of this report

    Health within the Leeds Migrant Roma Community; An Exploration of Health Status and Needs within One UK Area

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    Existing evidence shows that many Roma communities have received little attention in relation to their health requirements. Evidence illustrates how Roma communities suffer from poorer health and unhealthier living conditions when compared to majority populations, with their poor health closely linked to wider social determinants. This study explored the health status and associated health needs of the Leeds Roma migrant community, a hard to reach and under-explored group across Europe. Questionnaires (n = 70) and focus groups (n = 43) with Roma community members as well as interviews with health professionals (n = 5) working with them were used. The study found language was a key barrier to accessing health care and understanding health messages. Furthermore, participant’s understandings of the health system were hindered by their different experiences within their countries of origin. Self-reports illustrated low mental well-being, high levels of stress and unhealthy lifestyles as common issues. The research also highlighted several wider determinants of health as key concerns within the Roma community including housing, employment opportunities and money. The findings of this study contribute to increasing understandings of this community’s health needs, their support requirements and the barriers faced by them. These need to be considered to inform strategies and ways of working as mechanisms to tackle health inequalities and promote health within this community

    In silico validation of the autoinflammatory disease damage index

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    Introduction Autoinflammatory diseases can cause irreversible tissue damage due to systemic inflammation. Recently, the Autoinflammatory Disease Damage Index (ADDI) was developed. The ADDI is the first instrument to quantify damage in familial Mediterranean fever, cryopyrin-associated periodic syndromes, mevalonate kinase deficiency and tumour necrosis factor receptor-associated periodic syndrome. The aim of this study was to validate this tool for its intended use in a clinical/research setting. Methods The ADDI was scored on paper clinical cases by at least three physicians per case, independently of each other. Face and content validity were assessed by requesting comments on the ADDI. Reliability was tested by calculating the intraclass correlation coefficient (ICC) using an â observer-nested-within-subject\u27 design. Construct validity was determined by correlating the ADDI score to the Physician Global Assessment (PGA) of damage and disease activity. Redundancy of individual items was determined with Cronbach\u27s alpha. Results The ADDI was validated on a total of 110 paper clinical cases by 37 experts in autoinflammatory diseases. This yielded an ICC of 0.84 (95% CI 0.78 to 0.89). The ADDI score correlated strongly with PGA-damage (r=0.92, 95% CI 0.88 to 0.95) and was not strongly influenced by disease activity (r=0.395, 95% CI 0.21 to 0.55). After comments from disease experts, some item definitions were refined. The interitem correlation in all different categories was lower than 0.7, indicating that there was no redundancy between individual damage items. Conclusion The ADDI is a reliable and valid instrument to quantify damage in individual patients and can be used to compare disease outcomes in clinical studies
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