Health care and patients' education in a European inflammatory bowel disease inception cohort: An ECCO-EpiCom study

J. Burisch*, Z. Vegh, N. Pedersen, S. Čuković-Čavka, N. Turk, I. Kaimakliotis, D. Duricova, M. Bortlik, O. Shonová, N. Thorsgaard, S. Krabbe, V. Andersen, J. F. Dahlerup, J. Kjeldsen, R. Salupere, J. Olsen, K. R. Nielsen, P. Manninen, P. Collin, K. H. KatsanosE. V. Tsianos, K. Ladefoged, G. Ragnarsson, E. Björnsson, Y. Bailey, C. O'Morain, D. Schwartz, S. Odes, P. Politi, A. Santini, G. Kiudelis, L. Kupcinskas, S. Turcan, F. Magro, L. Barros, D. Lazar, A. Goldis, I. Nikulina, E. Belousova, L. Sanromán, D. Martinez-Ares, S. Almer, Y. Zhulina, J. Halfvarson, N. Arebi, Y. Houston, S. Sebastian, E. Langholz, P. L. Lakatos, P. Munkholm

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

14 Citations (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)811-818
Number of pages8
JournalJournal of Crohn's and Colitis
Volume8
Issue number8
DOIs
Publication statusPublished - 1 Aug 2014

Bibliographical note

Funding Information:
Unrestricted grant support has been received from the Danish Colitis Crohn Patients Organization (CCF), the Vibeke Binder and Povl Riis' Foundation, the Scientific Council at Herlev Hospital, the Sigrid Rigmor Moran Foundation, the Aage and Johanne Louis-Hansens Foundation, the Munkholm Foundation, the C.C. Klestrup and Henriette Klestrup Foundation, the Knud and Dagny Gad Andresens Foundation, the Else and Mogens Wedell-Wedellsborgs Foundation, the Direktør Jacob Madsen and Olga Madsens Foundation, ScanVet, the Torben og Alice Frimodt Foundation, the Lægernes forsikringsforening af 1891, the Bengt Ihre's foundation, the Nanna Svartz' foundation, the Örebro University Hospital Research Foundation, the Örebro County Research Foundation, the Swedish Foundation for Gastrointestinal research, the Swedish Research Council, the Swedish Society of Medicine, the Research Council of Southeast Sweden, the County Council of Östergötland, the Swedish Organization for the study of Inflammatory bowel disease, the International Organization of Inflammatory Bowel Diseases (IOIBD), the Competitive State Research Financing of the Expert Responsibility Area of Tampere University Hospital (grant no. 9P008), and the ECCO. The study sponsors have no contribution in the study design, analysis, interpretation of data and publication.

Other keywords

  • Inception cohort
  • Inflammatory bowel disease
  • Population-based
  • Quality of health care

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