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

J Burisch, Z Vegh, N Pedersen, S Cuković-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, EpiCom Group

Research output: Contribution to journalJournal articleResearchpeer-review

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.

Original languageEnglish
JournalJournal of Crohn's and Colitis
Volume8
Issue number8
Pages (from-to)811-818
ISSN1873-9946
DOIs
Publication statusPublished - 1. Aug 2014

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Patient Education
Inflammatory Bowel Diseases
Eastern Europe
Delivery of Health Care
Quality of Health Care
Nurses
Health Services Accessibility
Health Education
Health Personnel
Internet
Cohort Studies
Organizations
Education
Incidence
Population

Keywords

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

Cite this

Burisch, J., Vegh, Z., Pedersen, N., Cuković-Čavka, S., Turk, N., Kaimakliotis, I., ... EpiCom Group (2014). Health care and patients' education in a European inflammatory bowel disease inception cohort: An ECCO-EpiCom study. Journal of Crohn's and Colitis, 8(8), 811-818. https://doi.org/10.1016/j.crohns.2013.12.023
Burisch, J ; Vegh, Z ; Pedersen, N ; 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. / Health care and patients' education in a European inflammatory bowel disease inception cohort : An ECCO-EpiCom study. In: Journal of Crohn's and Colitis. 2014 ; Vol. 8, No. 8. pp. 811-818.
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title = "Health care and patients' education in a European inflammatory bowel disease inception cohort: An ECCO-EpiCom study",
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.",
keywords = "Inception cohort, Inflammatory bowel disease, Population-based, Quality of health care",
author = "J Burisch and Z Vegh and N Pedersen and S Cuković-Čavka and N Turk and I Kaimakliotis and D Duricova and M Bortlik and O Shonov{\'a} and N Thorsgaard and S Krabbe and V Andersen and Dahlerup, {J F} and J Kjeldsen and R Salupere and J Olsen and Nielsen, {K R} and P Manninen and P Collin and Katsanos, {K H} and Tsianos, {E V} and K Ladefoged and G Ragnarsson and E Bj{\"o}rnsson and Y Bailey and C O'Morain and D Schwartz and S Odes and P Politi and A Santini and G Kiudelis and L Kupcinskas and S Turcan and F Magro and L Barros and D Lazar and A Goldis and I Nikulina and E Belousova and L Sanrom{\'a}n and D Martinez-Ares and S Almer and Y Zhulina and J Halfvarson and N Arebi and Y Houston and S Sebastian and E Langholz and Lakatos, {P L} and P Munkholm and {EpiCom Group}",
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Burisch, J, Vegh, Z, Pedersen, N, Cuković-Čavka, S, Turk, N, Kaimakliotis, I, Duricova, D, Bortlik, M, Shonová, O, Thorsgaard, N, Krabbe, S, Andersen, V, Dahlerup, JF, Kjeldsen, J, Salupere, R, Olsen, J, Nielsen, KR, Manninen, P, Collin, P, Katsanos, KH, Tsianos, EV, 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, PL, Munkholm, P & EpiCom Group 2014, 'Health care and patients' education in a European inflammatory bowel disease inception cohort: An ECCO-EpiCom study', Journal of Crohn's and Colitis, vol. 8, no. 8, pp. 811-818. https://doi.org/10.1016/j.crohns.2013.12.023

Health care and patients' education in a European inflammatory bowel disease inception cohort : An ECCO-EpiCom study. / Burisch, J; Vegh, Z; Pedersen, N; 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 and Colitis, Vol. 8, No. 8, 01.08.2014, p. 811-818.

Research output: Contribution to journalJournal articleResearchpeer-review

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, N

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 - 2014/8/1

Y1 - 2014/8/1

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 - Inception cohort

KW - Inflammatory bowel disease

KW - Population-based

KW - Quality of health care

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 -