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

被引：21

作者：

Burisch, J. ^{[1
]}

Vegh, Z. ^{[1
,46
]}

Pedersen, N. ^{[1
]}

Cukovic-Cavka, S. ^{[2
]}

Turk, N. ^{[2
]}

Kaimakliotis, I.

Duricova, D. ^{[3
]}

Bortlik, M. ^{[3
]}

Shonova, O. ^{[4
]}

Thorsgaard, N. ^{[5
]}

Krabbe, S. ^{[6
]}

Andersen, V. ^{[6
,7
,8
]}

Dahlerup, J. F. ^{[9
]}

Kjeldsen, J. ^{[10
]}

Salupere, R. ^{[11
]}

Olsen, J. ^{[12
]}

Nielsen, K. R. ^{[12
]}

Manninen, P. ^{[13
]}

Collin, P. ^{[13
]}

Katsanos, K. H. ^{[14
,15
]}

Tsianos, E. V. ^{[14
,15
]}

Ladefoged, K. ^{[16
]}

Ragnarsson, G. ^{[17
]}

Bjornsson, E. ^{[17
]}

Bailey, Y. ^{[18
]}

O'Morain, C. ^{[18
]}

Schwartz, D. ^{[19
,20
]}

Odes, S. ^{[19
,20
]}

Politi, S. P. ^{[21
,23
,24
,25
,26
,27
]}

Santini, A. ^{[22
,23
,24
,25
,26
,27
]}

Kiudelis, G. ^{[28
]}

Kupcinskas, L. ^{[28
]}

Turcan, S. ^{[29
]}

Magro, F. ^{[30
,31
,32
]}

Barros, L. ^{[33
]}

Lazar, D. ^{[34
]}

Goldis, A. ^{[34
]}

Nikulina, I. ^{[35
]}

Belousova, E. ^{[35
]}

Sanroman, L. ^{[36
]}

Martinez-Ares, D. ^{[36
]}

Almer, S. ^{[37
,38
]}

Zhulina, Y. ^{[39
]}

Halfvarson, J. ^{[39
,40
]}

Arebi, N. ^{[41
]}

Houston, Y. ^{[42
]}

Sebastian, S. ^{[43
,44
]}

Langholz, E. ^{[45
]}

Lakatos, P. L. ^{[46
]}

Munkholm, P. ^{[1
]}

机构：

[1] Herlev Univ Hosp, Med Sect, Ctr Digest Dis, DK-2730 Copenhagen, Denmark

[2] Univ Zagreb Sch Med, Univ Hosp Ctr Zagreb, Div Gastroenterol & Hepatol, Zagreb, Croatia

[3] Charles Univ Prague, IBD Ctr ISCARE, Prague, Czech Republic

[4] Hosp Ceske Budejovice, Dept Gastroenterol, Ceske Budejovice, Czech Republic

[5] Herning Cent Hosp, Dept Med, Herning, Denmark

[6] Viborg Reg Hosp, Dept Med, Viborg, Denmark

[7] Hosp Southern Jutland, Dept Med, Aabenraa, Denmark

[8] Univ Southern Denmark, Inst Reg Hlth Res, Odense, Denmark

[9] Aarhus Univ Hosp, Dept Med Hepatol & Gastroenterol 5, Aarhus, Denmark

[10] Odense Univ Hosp, Dept Med Gastroenterol, DK-5000 Odense, Denmark

[11] Tartu Univ Hosp, Div Gastroenterol & Endocrinol, Tartu, Estonia

[12] Natl Hosp Faroe Isl, Dept Med, Torshavn, Faroe Islands, Denmark

[13] Tampere Univ Hosp, Dept Gastroenterol & Alimentary Tract Surg, Tampere, Finland

[14] Univ Ioannina, Sch Med, Div Internal Med 1, GR-45110 Ioannina, Greece

[15] Univ Ioannina, Sch Med, Div Gastroenterol, GR-45110 Ioannina, Greece

[16] Dronning Ingrids Hosp, Dept Med, Nuuk, Greenland

[17] Natl Univ Hosp Reykjavik, Sect Gastroenterol & Hepatol, Dept Internal Med, Reykjavik, Iceland

[18] TCD, Adelaide & Meath Hosp, Dept Gastroenterol, Dublin, Ireland

[19] Soroka Med Ctr, Dept Gastroenterol & Hepatol, IL-84101 Beer Sheva, Israel

[20] Ben Gurion Univ Negev, IL-84105 Beer Sheva, Israel

[21] Azienda Osped Istituti Ospitalieri Cremona, UO Med Interna & Gastroenterol, Cremona, Italy

[22] Careggi Hosp, Gastroenterol Unit, Florence, Italy

[23] EpiCom Northern Italy Ctr, Crema Cremona, Italy

[24] EpiCom Northern Italy Ctr, Florence, Italy

[25] EpiCom Northern Italy Ctr, Forli, Italy

[26] EpiCom Northern Italy Ctr, Padua, Italy

[27] EpiCom Northern Italy Ctr, Reggio Emilia, Italy

[28] Lithuanian Univ Hlth Sci, Inst Digest Res, Kaunas, Lithuania

[29] State Univ Med & Pharm Republ Moldova, Dept Gastroenterol, Kishinev, Moldova

[30] Hosp Sao Joao, Dept Gastroenterol, Oporto, Portugal

[31] Oporto Med Sch, Inst Pharmacol & Therapeut, Oporto, Portugal

[32] Univ Porto, Inst Mol & Cell Biol, P-4100 Oporto, Portugal

[33] Hosp Vale Sousa, Oporto, Portugal

[34] Univ Med Victor Babes, Gastroenterol Clin, Timisoara, Romania

[35] Moscow Reg Res Clin Inst, Dept Gastroenterol, Moscow, Russia

[36] Complexo Hosp Univ Vigo, Dept Gastroenterol, Vigo, Spain

[37] Karolinska Inst, Dept Med, Div Gastroenterol & Hepatol, Stockholm, Sweden

[38] Cty Council Ostergotland, Dept Gastroenterol UHL, Linkoping, Sweden

[39] Orebro Univ Hosp, Div Gastroenterol, Dept Med, Orebro, Sweden

[40] Univ Orebro, Sch Hlth & Med Sci, SE-70182 Orebro, Sweden

[41] Univ London Imperial Coll Sci Technol & Med, St Marks Hosp, Sir Alan Parks Physiol Unit, London, England

[42] Hull & East Yorkshire HNS Trust, Dept Gastroenterol, Kingston Upon Hull, N Humberside, England

[43] Hull Royal Infirm, Hull & East Yorkshire NHS Trust, Kingston Upon Hull HU3 2JZ, N Humberside, England

[44] Hull Royal Infirm, Hull & York Med Sch, Kingston Upon Hull HU3 2JZ, N Humberside, England

[45] Gentofte Univ Hosp, Dept Med Gastroenterol, Copenhagen, Denmark

[46] Semmelweis Univ, Dept Med 1, H-1085 Budapest, Hungary

来源：

JOURNAL OF CROHNS & COLITIS | 2014年 / 8卷 / 08期

基金：

瑞典研究理事会;

关键词：

Quality of health care; Inflammatory bowel disease; Inception cohort; Population-based; QUALITY-OF-CARE; IBD; PROGNOSIS; CONSENSUS; COLITIS; NURSE;

D O I：

10.1016/j.crohns.2013.12.023

中图分类号：

R57 [消化系及腹部疾病];

学科分类号：

摘要：

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.

引用

页码：811 / 818

页数：8

共 50 条

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