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

J Burisch; Z Vegh; Natalia 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 Katsanos; E 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

doi:10.1016/j.crohns.2013.12.023

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

J Burisch, Z Vegh, Natalia 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

Department of Clinical Medicine

14 Citations (Scopus)

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 10.1. 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.

Original language	English
Journal	Journal of Crohn's & colitis
Volume	8
Issue number	8
Pages (from-to)	811-818
Number of pages	8
ISSN	1873-9946
DOIs	https://doi.org/10.1016/j.crohns.2013.12.023
Publication status	Published - 1 Aug 2014

Keywords

Adolescent
Adult
Aged
Aged, 80 and over
Cohort Studies
Europe
Europe, Eastern
Female
Humans
Inflammatory Bowel Diseases
Male
Middle Aged
Patient Education as Topic
Patient Satisfaction
Quality of Health Care
Questionnaires
Time Factors
Young Adult

Access to Document

10.1016/j.crohns.2013.12.023

https://academic.oup.com/ecco-jcc/article-pdf/8/8/811/13072230/8-8-811.pdfLicence: CC BY

Cite this

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., ... EpiCom Group (2014). Health care and patients' education in a European inflammatory bowel disease inception cohort: An ECCO-EpiCom study. Journal of Crohn's & 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, 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 & colitis, vol. 8, no. 8, pp. 811-818. https://doi.org/10.1016/j.crohns.2013.12.023

@article{fe63028b362e499d902662c43874aa22,

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 10.1. 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.",

keywords = "Adolescent, Adult, Aged, Aged, 80 and over, Cohort Studies, Europe, Europe, Eastern, Female, Humans, Inflammatory Bowel Diseases, Male, Middle Aged, Patient Education as Topic, Patient Satisfaction, Quality of Health Care, Questionnaires, Time Factors, Young Adult",

author = "J Burisch and Z Vegh and Natalia Pedersen and S Cukovi{\'c}-{\v C}avka 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}",

year = "2014",

month = aug,

day = "1",

doi = "10.1016/j.crohns.2013.12.023",

language = "English",

volume = "8",

pages = "811--818",

journal = "Journal of Crohn's & colitis",

issn = "1873-9946",

publisher = "Oxford University Press",

number = "8",

}

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

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 10.1. 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.

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 10.1. 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.

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

SN - 1873-9946

VL - 8

SP - 811

EP - 818

JO - Journal of Crohn's & colitis

JF - Journal of Crohn's & colitis

IS - 8

ER -

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

Abstract

Keywords

Access to Document

Fingerprint

Cite this