Back to Search Start Over

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

Authors :
Rita Marron
Deirdre Ormond
Deborah M. Lambert
Mary C. Burke
Frank Broderick
Fergus Mason
Eileen P. Treacy
Sheila Casey
David Gibney
Jacqueline Turner
Maureen Mason
Marguerite Doyle
Grace O’Sullivan
Niall Byrne
Daniel N. Murphy
Colm O’ Sé
David Molony
Conor O’Shea
Source :
Irish Journal of Medical Science
Publication Year :
2020
Publisher :
Springer Science and Business Media LLC, 2020.

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 Conclusions Both specific rare disease-specific coding and use of the relevant rare disease information sources are lacking in general practice in Ireland.

Details

ISSN :
18634362 and 00211265
Volume :
189
Database :
OpenAIRE
Journal :
Irish Journal of Medical Science (1971 -)
Accession number :
edsair.doi.dedup.....64881bbf67e9711e1a35428bcd33781c
Full Text :
https://doi.org/10.1007/s11845-019-02168-4