2 resultados para task-force

em CORA - Cork Open Research Archive - University College Cork - Ireland


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This paper examines variations in suicide in the eight Health Boards of the Republic of Ireland for the years 1976 to 1995. It is found that while all have experienced a rise in male suicide, it has been much less pronounced in the Eastern Health Board which is somewhat surprising when one considers Dublin’s much-publicised problems with homelessness and hard drug misuse. Since the mid-eighties, female rates have been somewhat higher in the southern half of the country, comprising the Southern, Mid-Western and South-Eastern Health Boards. This variation may reflect a difficulty with contacting services for psychological distress in rural areas, either because of stigma or simple practical problems associated with transport. The development of appropriate services, especially in rural areas, should be at the top of the agenda of any Resource Officer to be appointed subsequent to the Final Report of the Task Force.

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Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. A European Respiratory Society (ERS) Task Force aims to address disparities in diagnostics across Europe by providing evidence-based clinical practice guidelines. We aimed to identify challenges faced by patients when referred for PCD diagnostic testing. A patient survey was developed by patient representatives and healthcare specialists to capture experience. Online versions of the survey were translated into nine languages and completed in 25 countries. Of the respondents (n=365), 74% were PCD-positive, 5% PCD-negative and 21% PCD-uncertain/inconclusive. We then interviewed 20 parents/patients. Transcripts were analysed thematically. 35% of respondents visited their doctor more than 40 times with PCD-related symptoms prior to diagnostic referral. Furthermore, the most prominent theme among interviewees was a lack of PCD awareness among medical practitioners and failure to take past history into account, leading to delayed diagnosis. Patients also highlighted the need for improved reporting of results and a solution to the “inconclusive” diagnostic status. These findings will be used to advise the ERS Task Force guidelines for diagnosing PCD, and should help stakeholders responsible for improving existing services and expanding provision for diagnosis of this rare disease.