J Burisch1, Z Vegh2, N Pedersen3, S Cuković-Čavka4, N Turk4, I Kaimakliotis5, D Duricova6, M Bortlik6, O Shonová7, N Thorsgaard8, S Krabbe9, V Andersen10, J F Dahlerup11, J Kjeldsen12, R Salupere13, J Olsen14, K R Nielsen14, P Manninen15, P Collin15, K H Katsanos16, E V Tsianos16, K Ladefoged17, G Ragnarsson18, E Björnsson18, Y Bailey19, C O'Morain19, D Schwartz20, S Odes20, P Politi21, A Santini22, G Kiudelis23, L Kupcinskas23, S Turcan24, F Magro25, L Barros26, D Lazar27, A Goldis27, I Nikulina28, E Belousova28, L Sanromán29, D Martinez-Ares29, S Almer30, Y Zhulina31, J Halfvarson32, N Arebi33, Y Houston34, S Sebastian35, E Langholz36, P L Lakatos37, P Munkholm3. 1. Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark. Electronic address: burisch@dadlnet.dk. 2. Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark; 1st Department of Medicine, Semmelweis University, Budapest, Hungary. 3. Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark. 4. Division of Gastroenterology and Hepatology, University Hospital Center Zagreb, University of Zagreb School of Medicine, Zagreb, Croatia. 5. Nicosia private practice, Nicosia, Cyprus. 6. IBD Center ISCARE, Charles University, Prague, Czech Republic. 7. Gastroenterology Department, Hospital České Budějovice, České Budějovice, Czech Republic. 8. Department of Medicine, Herning Central Hospital, Herning, Denmark. 9. Medical Department, Viborg Regional Hospital, Viborg, Denmark. 10. 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. 11. Department of Medicine V (Hepatology and Gastroenterology), Aarhus University Hospital, Arhus, Denmark. 12. Department of Medical Gastroenterology, Odense University Hospital, Odense, Denmark. 13. Division of Endocrinology and Gastroenterology, Tartu University Hospital, Tartu, Estonia. 14. Medical Department, The National Hospital of the Faroe Islands, Torshavn, Faroe Islands. 15. Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland. 16. 1st Division of Internal Medicine and Division of Gastroenterology, Medical School, University of Ioannina, Ioannina, Greece. 17. Medical Department, Dronning Ingrids Hospital, Nuuk, Greenland. 18. Department of Internal Medicine, Section of Gastroenterology and Hepatology, The National University Hospital, Reykjavik, Iceland. 19. Department of Gastroenterology, Adelaide and Meath Hospital, TCD, Dublin, Ireland. 20. Department of Gastroenterology and Hepatology, Soroka Medical Center and Ben Gurion University of the Negev, Beer Sheva, Israel. 21. 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 & Cremona, Firenze, Forlì, Padova and Reggio Emilia, Italy. 22. Gastroenterology Unit, Careggi Hospital, Florence, Italy; On behalf of the EpiCom Northern Italy Centre based in Crema & Cremona, Firenze, Forlì, Padova and Reggio Emilia, Italy. 23. Institute for Digestive Research, Lithuanian University of Health Sciences, Kaunas, Lithuania. 24. Department of Gastroenterology, State University of Medicine and Pharmacy of the Republic of Moldova, Chisinau, Republic of Moldova. 25. 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. 26. Hospital de Vale de Sousa, Porto, Portugal. 27. Clinic of Gastroenterology, University of Medicine 'Victor Babes', Timisoara, Romania. 28. Department of Gastroenterology, Moscow Regional Research Clinical Institute, Moscow, Russia. 29. Gastroenterology Department, Complexo Hospitalario Universitario de Vigo, Vigo, Spain, Vigo, Spain. 30. Division of Gastroenterology and Hepatology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden; Department of Gastroenterology/UHL, County council of Östergötland, Linköping, Sweden. 31. Department of Medicine, Division of Gastroenterology, Örebro University Hospital, Örebro, Sweden. 32. Department of Medicine, Division of Gastroenterology, Örebro University Hospital, Örebro, Sweden; School of Health and Medical Sciences, Örebro University, Örebro, Sweden. 33. Sir Alan Park's Physiology Unit, St Mark's Hospital, Imperial College London, London, UK. 34. Department of Gastroenterology, Hull & East Yorkshire HNS Trust, Hull, UK. 35. Hull and East Yorkshire NHS Trust & Hull and York Medical School, Hull Royal Infirmary, Hull, UK. 36. Department of Medical Gastroenterology, Gentofte Hospital, Copenhagen, Denmark. 37. 1st Department of Medicine, Semmelweis University, Budapest, Hungary.
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 10.1million 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.
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.