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

. 2014 Aug ; 8 (8) : 811-8. [epub] 20140116

Language English Country Great Britain, England Media print-electronic

Document type Journal Article, Research Support, Non-U.S. Gov't

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 10.1million 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.

1st Department of Medicine Semmelweis University Budapest Hungary

1st Division of Internal Medicine and Division of Gastroenterology Medical School University of Ioannina Ioannina Greece

Clinic of Gastroenterology University of Medicine 'Victor Babes' Timisoara Romania

Department of Gastroenterology Adelaide and Meath Hospital TCD Dublin Ireland

Department of Gastroenterology and Alimentary Tract Surgery Tampere University Hospital Tampere Finland

Department of Gastroenterology and Hepatology Soroka Medical Center and Ben Gurion University of the Negev Beer Sheva Israel

Department of Gastroenterology Hospital de São João Porto Portugal; Institute of Pharmacology and Therapeutics Oporto Medical School Porto Portugal; Institute for Molecular and Cell Biology University of Porto Porto Portugal

Department of Gastroenterology Hull and East Yorkshire HNS Trust Hull UK

Department of Gastroenterology Moscow Regional Research Clinical Institute Moscow Russia

Department of Gastroenterology State University of Medicine and Pharmacy of the Republic of Moldova Chisinau Republic of Moldova

Department of Internal Medicine Section of Gastroenterology and Hepatology The National University Hospital Reykjavik Iceland

Department of Medical Gastroenterology Gentofte Hospital Copenhagen Denmark

Department of Medical Gastroenterology Odense University Hospital Odense Denmark

Department of Medicine 5 Aarhus University Hospital Arhus Denmark

Department of Medicine Division of Gastroenterology Örebro University Hospital Örebro Sweden

Department of Medicine Division of Gastroenterology Örebro University Hospital Örebro Sweden; School of Health and Medical Sciences Örebro University Örebro Sweden

Department of Medicine Herning Central Hospital Herning Denmark

Digestive Disease Centre Medical Section Herlev University Hospital Copenhagen Denmark

Digestive Disease Centre Medical Section Herlev University Hospital Copenhagen Denmark; 1st Department of Medicine Semmelweis University Budapest Hungary

Division of Endocrinology and Gastroenterology Tartu University Hospital Tartu Estonia

Division of Gastroenterology and Hepatology Department of Medicine Karolinska Institutet Stockholm Sweden; Department of Gastroenterology UHL County council of Östergötland Linköping Sweden

Division of Gastroenterology and Hepatology University Hospital Center Zagreb University of Zagreb School of Medicine Zagreb Croatia

Gastroenterology Department Complexo Hospitalario Universitario de Vigo Vigo Spain Vigo Spain

Gastroenterology Department Hospital České Budějovice České Budějovice Czech Republic

Gastroenterology Unit Careggi Hospital Florence Italy; On behalf of the EpiCom Northern Italy Centre based in Crema and Cremona Firenze Forlì Padova and Reggio Emilia Italy

Hospital de Vale de Sousa Porto Portugal

Hull and East Yorkshire NHS Trust and Hull and York Medical School Hull Royal Infirmary Hull UK

IBD Center ISCARE Charles University Prague Czech Republic

Institute for Digestive Research Lithuanian University of Health Sciences Kaunas Lithuania

Medical Department Dronning Ingrids Hospital Nuuk Greenland

Medical Department The National Hospital of the Faroe Islands Torshavn Faroe Islands

Medical Department Viborg Regional Hospital Viborg Denmark

Medical Department Viborg Regional Hospital Viborg Denmark; Medical Department Hospital of Southern Jutland Aabenraa Denmark; Institute of Regional Health Research University of Southern Denmark Odense Denmark

Nicosia private practice Nicosia Cyprus

Sir Alan Park's Physiology Unit St Mark's Hospital Imperial College London London UK

U O di Medicina Interna e Gastroenterologia Azienda Ospedaliera Istituti Ospitalieri di Cremona Italy; On behalf of the EpiCom Northern Italy Centre based in Crema and Cremona Firenze Forlì Padova and Reggio Emilia Italy

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