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The role of primary care in management of rare diseases in Ireland.

dc.contributor.authorByrne, Niall
dc.contributor.authorTurner, Jacqueline
dc.contributor.authorMarron, Rita
dc.contributor.authorLambert, Deborah M
dc.contributor.authorMurphy, Daniel N
dc.contributor.authorO'Sullivan, Grace
dc.contributor.authorMason, Maureen
dc.contributor.authorBroderick, Frank
dc.contributor.authorBurke, Mary C
dc.contributor.authorCasey, Sheila
dc.contributor.authorDoyle, Marguerite
dc.contributor.authorGibney, David
dc.contributor.authorMason, Fergus
dc.contributor.authorMolony, David
dc.contributor.authorOrmond, Deirdre
dc.contributor.authorO' Sé, Colm
dc.contributor.authorO'Shea, Conor
dc.contributor.authorTreacy, Eileen P
dc.date.accessioned2020-09-23T09:59:55Z
dc.date.available2020-09-23T09:59:55Z
dc.date.issued2020-01-13
dc.identifier.pmid31933130
dc.identifier.doi10.1007/s11845-019-02168-4
dc.identifier.urihttp://hdl.handle.net/10147/628325
dc.descriptionBackground: '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.en_US
dc.language.isoenen_US
dc.subjectClinical codingen_US
dc.subjectGENERAL PRACTITIONERSen_US
dc.subjectIntegrated delivery of healthcareen_US
dc.subjectPatient care managementen_US
dc.subjectRare diseasesen_US
dc.titleThe role of primary care in management of rare diseases in Ireland.en_US
dc.typeArticleen_US
dc.identifier.eissn1863-4362
dc.identifier.journalIrish journal of medical scienceen_US
dc.source.journaltitleIrish journal of medical science
dc.source.volume189
dc.source.issue3
dc.source.beginpage771
dc.source.endpage776
refterms.dateFOA2020-09-23T10:00:09Z
dc.source.countryIreland


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