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Health care and patients' education in a European inflammatory bowel disease inception cohort: an ECCO-EpiCom study
Herlev Univ Hosp, Med Sect, Ctr Digest Dis, Copenhagen, Denmark.
Herlev Univ Hosp, Med Sect, Ctr Digest Dis, Copenhagen, Denmark; Semmelweis Univ, Dept Med 1, Budapest, Hungary.
Herlev Univ Hosp, Med Sect, Ctr Digest Dis, Copenhagen, Denmark.
Univ Zagreb Sch Med, Univ Hosp Ctr Zagreb, Div Gastroenterol & Hepatol, Zagreb, Croatia.
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2014 (English)In: Journal of Crohn's & Colitis, ISSN 1873-9946, E-ISSN 1876-4479, Vol. 8, no 8, 811-818 p.Article in journal (Refereed) Published
Abstract [en]

Background and Aims: The EpiCom study and inception cohort was initiated in 2010 in 31 centers from 14 Western and 8 Eastern European countries, covering a 10.1 million person background population. Our aim was to investigate whether there is a difference between Eastern and Western Europe in health care and education of patients with inflammatory bowel disease (IBD).

Methods: A quality of care (QoC) questionnaire was developed in the EpiCom group consisting of 16 questions covering 5 items: time interval between the onset of symptoms and diagnosis, information, education, empathy and access to health care providers.

Results: Of 1,515 patients, 947 (217 east/730 west) answered the QoC questionnaire. Only 23% of all patients had knowledge about IBD before diagnosis. In Eastern Europe, significantly more patients searched out information about IBD themselves (77% vs. 68%, p < 0.05), the main source was the Internet (92% vs. 88% p = 0.23). In Western Europe, significantly more patients were educated by nurses (19% vs. 1%, p < 0.05), while in Eastern Europe, gastroenterologists were easier to contact (80% vs. 68%, p < 0.05).

Conclusion: Health care differed significantly between Eastern and Western Europe in all items, but satisfaction rates were high in both geographic regions. Because of the low awareness and the rising incidence of IBD, general information should be the focus of patient organizations and medical societies. In Western Europe IBD nurses play a very important role in reducing the burden of patient management. (c) 2014 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.

Place, publisher, year, edition, pages
2014. Vol. 8, no 8, 811-818 p.
Keyword [en]
Quality of health care, Inflammatory bowel disease, Inception cohort, Population-based
National Category
Gastroenterology and Hepatology
Research subject
Medicine
Identifiers
URN: urn:nbn:se:oru:diva-36532DOI: 10.1016/j.crohns.2013.12.023ISI: 000340333200013OAI: oai:DiVA.org:oru-36532DiVA: diva2:747380
Funder
Swedish Research Council
Note

Funding Agencies:

Danish Colitis Crohn Patients Organization (CCF)

Vibeke Binder and Povl Riis Foundation

Scientific Council at Herlev Hospital

Sigrid Rigmor Moran Foundation

Aage and Johanne Louis-Hansens Foundation

Munkholm Foundation

C.C. Klestrup and Henriette Klestrup Foundation

Knud and Dagny Gad Andresens Foundation

Else and Mogens Wedell-Wedellsborgs Foundation

Direktor Jacob Madsen and Olga Madsens Foundation

ScanVet

Torben og Alice Frimodt Foundation

Laegemes forsikringsforening af

Bengt Ihre's foundation

Nanna Svartz foundation

Orebro University Hospital Research Foundation

Orebro County Research Foundation

Swedish Foundation for Gastrointestinal research

Swedish Society of Medicine

Research Council of Southeast Sweden

County Council of Ostergotland

Swedish Organization

International Organization of Inflammatory Bowel Diseases (IOIBD)

Competitive State Research Financing of the Expert Responsibility Area of Tampere University Hospital

ECCO

Available from: 2014-09-16 Created: 2014-09-15 Last updated: 2017-10-17Bibliographically approved

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Zhulina, YaroslavaHalfvarson, Jonas
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School of Health and Medical Sciences, Örebro University, SwedenSchool of Medicine, Örebro University, Sweden
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