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Idiopathic pulmonary fibrosis in Sweden: report from the first year of activity of the Swedish IPF-Registry.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Research and Development, Gävleborg.
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2016 (English)In: European Clinical Respiratory Journal, ISSN 2001-8525, Vol. 3, article id 31090Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is an emerging problem in the western world, being related to increasing age and implying significant costs for the diagnosis and management of affected patients. The epidemiology of IPF is not well understood.

METHODS: To allow estimates of the problem and eventually to evaluate quality of the care of IPF patients in Sweden, a national IPF Registry was started in the autumn of 2014. Data on criteria used to diagnose IPF, demographics, lung function, and quality of life (measured with the King's Brief Interstitial Lung Disease Questionnaire, K-BILD) were reported directly to the registry, based at the coordinating centre (Karolinska University Hospital, Stockholm, Sweden) via a web-based platform.

RESULTS: During the first year, the registry was implemented in 11 (33%) of the 33 respiratory units in the country. Seventy-one patients were registered between October 2014 and October 2015, 50 (70.4%) males and 21 (29.6%) females. Median age was 70 (range 47-86). The mean K-BILD score at the first inclusion in the registry was 54.3+9.5.

CONCLUSIONS: The main features of IPF patients in this first Swedish cohort were consistent with data published in the literature in main multinational randomized controlled trials. The K-BILD questionnaire showed that quality of life of patients with IPF and their perception of the disease are quite poor at the time of inclusion in the registry.

Place, publisher, year, edition, pages
2016. Vol. 3, article id 31090
Keywords [en]
K-BILD, idiopathic pulmonary fibrosis, lung function, quality of life, registry
National Category
Respiratory Medicine and Allergy
Identifiers
URN: urn:nbn:se:uu:diva-361342DOI: 10.3402/ecrj.v3.31090PubMedID: 27105945OAI: oai:DiVA.org:uu-361342DiVA, id: diva2:1250273
Available from: 2018-09-23 Created: 2018-09-23 Last updated: 2018-12-12Bibliographically approved

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