Health care and patients' education in a European inflammatory bowel disease inception cohort: an ECCO-EpiCom study.
OBJECTIVE
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).


CONCLUSIONS
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.
Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark. Electronic address: burisch@dadlnet.dk.
J
J
Burisch
Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark; 1st Department of Medicine, Semmelweis University, Budapest, Hungary.
Z
Z
Vegh
Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark.
N
N
Pedersen
Division of Gastroenterology and Hepatology, University Hospital Center Zagreb, University of Zagreb School of Medicine, Zagreb, Croatia.
S
S
Cuković-Čavka
Division of Gastroenterology and Hepatology, University Hospital Center Zagreb, University of Zagreb School of Medicine, Zagreb, Croatia.
N
N
Turk
Nicosia private practice, Nicosia, Cyprus.
I
I
Kaimakliotis
IBD Center ISCARE, Charles University, Prague, Czech Republic.
D
D
Duricova
IBD Center ISCARE, Charles University, Prague, Czech Republic.
M
M
Bortlik
Gastroenterology Department, Hospital České Budějovice, České Budějovice, Czech Republic.
O
O
Shonová
Department of Medicine, Herning Central Hospital, Herning, Denmark.
N
N
Thorsgaard
Medical Department, Viborg Regional Hospital, Viborg, Denmark.
S
S
Krabbe
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.
V
V
Andersen
Department of Medicine V (Hepatology and Gastroenterology), Aarhus University Hospital, Arhus, Denmark.
J F
JF
Dahlerup
Department of Medical Gastroenterology, Odense University Hospital, Odense, Denmark.
J
J
Kjeldsen
Division of Endocrinology and Gastroenterology, Tartu University Hospital, Tartu, Estonia.
R
R
Salupere
Medical Department, The National Hospital of the Faroe Islands, Torshavn, Faroe Islands.
J
J
Olsen
Medical Department, The National Hospital of the Faroe Islands, Torshavn, Faroe Islands.
K R
KR
Nielsen
Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland.
P
P
Manninen
Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland.
P
P
Collin
1st Division of Internal Medicine and Division of Gastroenterology, Medical School, University of Ioannina, Ioannina, Greece.
K H
KH
Katsanos
1st Division of Internal Medicine and Division of Gastroenterology, Medical School, University of Ioannina, Ioannina, Greece.
E V
EV
Tsianos
Medical Department, Dronning Ingrids Hospital, Nuuk, Greenland.
K
K
Ladefoged
Department of Internal Medicine, Section of Gastroenterology and Hepatology, The National University Hospital, Reykjavik, Iceland.
G
G
Ragnarsson
Department of Internal Medicine, Section of Gastroenterology and Hepatology, The National University Hospital, Reykjavik, Iceland.
E
E
Björnsson
Department of Gastroenterology, Adelaide and Meath Hospital, TCD, Dublin, Ireland.
Y
Y
Bailey
Department of Gastroenterology, Adelaide and Meath Hospital, TCD, Dublin, Ireland.
C
C
O'Morain
Department of Gastroenterology and Hepatology, Soroka Medical Center and Ben Gurion University of the Negev, Beer Sheva, Israel.
D
D
Schwartz
Department of Gastroenterology and Hepatology, Soroka Medical Center and Ben Gurion University of the Negev, Beer Sheva, Israel.
S
S
Odes
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.
P
P
Politi
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.
A
A
Santini
Institute for Digestive Research, Lithuanian University of Health Sciences, Kaunas, Lithuania.
G
G
Kiudelis
Institute for Digestive Research, Lithuanian University of Health Sciences, Kaunas, Lithuania.
L
L
Kupcinskas
Department of Gastroenterology, State University of Medicine and Pharmacy of the Republic of Moldova, Chisinau, Republic of Moldova.
S
S
Turcan
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.
F
F
Magro
Hospital de Vale de Sousa, Porto, Portugal.
L
L
Barros
Clinic of Gastroenterology, University of Medicine 'Victor Babes', Timisoara, Romania.
D
D
Lazar
Clinic of Gastroenterology, University of Medicine 'Victor Babes', Timisoara, Romania.
A
A
Goldis
Department of Gastroenterology, Moscow Regional Research Clinical Institute, Moscow, Russia.
I
I
Nikulina
Department of Gastroenterology, Moscow Regional Research Clinical Institute, Moscow, Russia.
E
E
Belousova
Gastroenterology Department, Complexo Hospitalario Universitario de Vigo, Vigo, Spain, Vigo, Spain.
L
L
Sanromán
Gastroenterology Department, Complexo Hospitalario Universitario de Vigo, Vigo, Spain, Vigo, Spain.
D
D
Martinez-Ares
Division of Gastroenterology and Hepatology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden; Department of Gastroenterology/UHL, County council of Östergötland, Linköping, Sweden.
S
S
Almer
Department of Medicine, Division of Gastroenterology, Örebro University Hospital, Örebro, Sweden.
Y
Y
Zhulina
Department of Medicine, Division of Gastroenterology, Örebro University Hospital, Örebro, Sweden; School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
J
J
Halfvarson
Sir Alan Park's Physiology Unit, St Mark's Hospital, Imperial College London, London, UK.
N
N
Arebi
Department of Gastroenterology, Hull & East Yorkshire HNS Trust, Hull, UK.
Y
Y
Houston
Hull and East Yorkshire NHS Trust & Hull and York Medical School, Hull Royal Infirmary, Hull, UK.
S
S
Sebastian
Department of Medical Gastroenterology, Gentofte Hospital, Copenhagen, Denmark.
E
E
Langholz
1st Department of Medicine, Semmelweis University, Budapest, Hungary.
P L
PL
Lakatos
Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark.
P
P
Munkholm
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015331:Cohort Studies; D005060:Europe / Q000453:epidemiology; D005061:Europe, Eastern / Q000453:epidemiology; D005260:Female; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic / Q000706:statistics & numerical data; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D011787:Quality of Health Care / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D013997:Time Factors; D055815:Young Adult
Inception cohort; Inflammatory bowel disease; Population-based; Quality of health care