Abstract:
BACKGROUND:'Slaintecare' aims to address complex patient care needs in an integrated fashion with an emphasis on patient-centred, patient-empowered community care.Currently there is a lack of knowledge of the impact of rare disease management in primary care and of the information tools required by general practitioners to deliver integrated care for rare disease patients. AIMS:To complete a pilot survey to estimate the general practice clinical workload attributable to selected rare diseases and assess the use of relevant information sources. METHODS:A retrospective cross-sectional survey was carried out of general practice consultations (2013-2017) for patients with 22 commonly recognised rare diseases. RESULTS:Around 31 general practitioners from 10 Irish practices completed information on 171 patients with rare diseases over 3707 consultations. General practice-specific coding systems were inadequate for rare disease patient identification. Over 139 (81.3%) patients were adult, and 32 (18.7%) were children. Management of care was hospital and not primary care based in 63%. Those eligible for state-reimbursed care had a significantly higher median number of consultations (23 consultations, IQR = 13-37, or 5.8 consultations/year) than those who paid privately (10 consultations, IQR = 4-19, or 2.5 consultations/year) (p < 0.005).General practitioners had access to public information resources on rare diseases but few had knowledge of (35.5%), or had ever used (12.9%) Orphanet, the international rare disease information portal. CONCLUSIONS:Both specific rare disease-specific coding and use of the relevant rare disease information sources are lacking in general practice in Ireland.
journal_name
Ir J Med Scijournal_title
Irish journal of medical scienceauthors
Byrne N,Turner J,Marron R,Lambert DM,Murphy DN,O'Sullivan G,Mason M,Broderick F,Burke MC,Casey S,Doyle M,Gibney D,Mason F,Molony D,Ormond D,O' Sé C,O'Shea C,Treacy EPdoi
10.1007/s11845-019-02168-4subject
Has Abstractpub_date
2020-08-01 00:00:00pages
771-776issue
3eissn
0021-1265issn
1863-4362pii
10.1007/s11845-019-02168-4journal_volume
189pub_type
杂志文章abstract:BACKGROUND:Surveillance of Clostridium difficile infection (CDI) is an essential component of a CDI preventative programme. AIMS:The aim of this study was to evaluate two methods of CDI surveillance. METHODS:Prevalence of CDI, antibiotic use and associated co-morbidity was assessed weekly on two wards over 6 weeks. I...
journal_title:Irish journal of medical science
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journal_title:Irish journal of medical science
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更新日期:2015-03-01 00:00:00
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journal_title:Irish journal of medical science
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abstract:BACKGROUND:The first Irish heart transplant was performed on the 10th of September 1985. Over the next 20 years, 229 transplants were performed in 228 recipients. AIMS:To evaluate the success of the first generation of cardiac transplantation in Ireland. METHODS:Analysis of clinical outcomes and survival statistics f...
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journal_title:Irish journal of medical science
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journal_title:Irish journal of medical science
pub_type: 临床试验,杂志文章
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journal_title:Irish journal of medical science
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journal_title:Irish journal of medical science
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journal_title:Irish journal of medical science
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更新日期:1991-09-01 00:00:00
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journal_title:Irish journal of medical science
pub_type: 杂志文章,评审
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更新日期:1993-05-01 00:00:00
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journal_title:Irish journal of medical science
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journal_title:Irish journal of medical science
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journal_title:Irish journal of medical science
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