Health care and patients' education in a European inflammatory bowel disease inception cohort: An ECCO-EpiCom study
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Health care and patients' education in a European inflammatory bowel disease inception cohort : An ECCO-EpiCom study. / Burisch, J; Vegh, Z; Pedersen, Natalia; Cuković-Čavka, S; Turk, N; Kaimakliotis, I; Duricova, D; Bortlik, M; Shonová, O; Thorsgaard, N; Krabbe, S; Andersen, V; Dahlerup, J F; Kjeldsen, J; Salupere, R; Olsen, J; Nielsen, K R; Manninen, P; Collin, P; Katsanos, K H; Tsianos, E V; Ladefoged, K; Ragnarsson, G; Björnsson, E; Bailey, Y; O'Morain, C; Schwartz, D; Odes, S; Politi, P; Santini, A; Kiudelis, G; Kupcinskas, L; Turcan, S; Magro, F; Barros, L; Lazar, D; Goldis, A; Nikulina, I; Belousova, E; Sanromán, L; Martinez-Ares, D; Almer, S; Zhulina, Y; Halfvarson, J; Arebi, N; Houston, Y; Sebastian, S; Langholz, E; Lakatos, P L; Munkholm, P; EpiCom Group.
In: Journal of Crohn's & colitis, Vol. 8, No. 8, 08.2014, p. 811-818.Research output: Contribution to journal › Journal article › Research › peer-review
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TY - JOUR
T1 - Health care and patients' education in a European inflammatory bowel disease inception cohort
T2 - An ECCO-EpiCom study
AU - Burisch, J
AU - Vegh, Z
AU - Pedersen, Natalia
AU - Cuković-Čavka, S
AU - Turk, N
AU - Kaimakliotis, I
AU - Duricova, D
AU - Bortlik, M
AU - Shonová, O
AU - Thorsgaard, N
AU - Krabbe, S
AU - Andersen, V
AU - Dahlerup, J F
AU - Kjeldsen, J
AU - Salupere, R
AU - Olsen, J
AU - Nielsen, K R
AU - Manninen, P
AU - Collin, P
AU - Katsanos, K H
AU - Tsianos, E V
AU - Ladefoged, K
AU - Ragnarsson, G
AU - Björnsson, E
AU - Bailey, Y
AU - O'Morain, C
AU - Schwartz, D
AU - Odes, S
AU - Politi, P
AU - Santini, A
AU - Kiudelis, G
AU - Kupcinskas, L
AU - Turcan, S
AU - Magro, F
AU - Barros, L
AU - Lazar, D
AU - Goldis, A
AU - Nikulina, I
AU - Belousova, E
AU - Sanromán, L
AU - Martinez-Ares, D
AU - Almer, S
AU - Zhulina, Y
AU - Halfvarson, J
AU - Arebi, N
AU - Houston, Y
AU - Sebastian, S
AU - Langholz, E
AU - Lakatos, P L
AU - Munkholm, P
AU - EpiCom Group
N1 - Copyright © 2014 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.
PY - 2014/8
Y1 - 2014/8
N2 - 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.
AB - 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.
KW - Adolescent
KW - Adult
KW - Aged
KW - Aged, 80 and over
KW - Cohort Studies
KW - Europe
KW - Europe, Eastern
KW - Female
KW - Humans
KW - Inflammatory Bowel Diseases
KW - Male
KW - Middle Aged
KW - Patient Education as Topic
KW - Patient Satisfaction
KW - Quality of Health Care
KW - Questionnaires
KW - Time Factors
KW - Young Adult
U2 - 10.1016/j.crohns.2013.12.023
DO - 10.1016/j.crohns.2013.12.023
M3 - Journal article
C2 - 24439390
VL - 8
SP - 811
EP - 818
JO - Journal of Crohn's and Colitis
JF - Journal of Crohn's and Colitis
SN - 1873-9946
IS - 8
ER -
ID: 138174437