10 research outputs found

    Primary immune deficiencies - principles of care

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    Primary immune deficiencies (PIDs) are a growing group of over 230 different disorders caused by ineffective, absent or an increasing number of gain of function mutations in immune components, mainly cells and proteins. Once recognized, these rare disorders are treatable and in some cases curable. Otherwise untreated PIDs are often chronic, serious, or even fatal. The diagnosis of PIDs can be difficult due to lack of awareness or facilities for diagnosis, and management of PIDs is complex. This document was prepared by a worldwide multi-disciplinary team of specialists; it aims to set out comprehensive principles of care for PIDs. These include the role of specialized centers, the importance of registries, the need for multinational research, the role of patient organizations, management and treatment options, the requirement for sustained access to all treatments including immunoglobulin therapies and hematopoietic stem cell transplantation, important considerations for developing countries and suggestions for implementation. A range of healthcare policies and services have to be put into place by government agencies and healthcare providers, to ensure that PID patients worldwide have access to appropriate and sustainable medical and support services

    Supporting the changes in nurse prescribing

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    Effect of web page menu orientation on retrieving information by people with learning disabilities

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    The Internet facilitates the provision of accessible infor- mation to people with learning disabilities. However, problems with navigation and retrieval represent a barrier for this cohort. This article addresses one aspect of page design, testing whether a horizontal or vertical contents arrangement facilitates faster access to content for people with learning disabilities. Participants were timed as they looked for one-word \u201cdummy\u201d menu entries appearing in various locations along a horizontal or vertical grid. The words corresponded to images shown at random in a word-search type activity. Results were analyzed using mixed effects models. Results showed that mean search times increased as the posi- tion shifted from left to right and from top to bottom. Thus, participants undertook the test as if it were a reading exercise, despite the images appearing in the center of the page and the words appearing at random positions. The research also suggests that a horizontal menu may be more effective than a vertical one, with the most important links placed on the left. The propensity to imbibe information \u201cserially\u201d (word-for-word) rather than to skim or look \u201cglobally\u201d has important website design implications

    N-ECCO Consensus statements on the European nursing roles in caring for patients with Crohn's disease or ulcerative colitis

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