Disease course of inflammatory bowel disease unclassified in a European population-based inception cohort: An Epi-IBD study

for the Epi-IBD group

Research output: Contribution to journalArticle

Abstract

Background and Aim: A definitive diagnosis of Crohn's disease (CD) or ulcerative colitis (UC) is not always possible, and a proportion of patients will be diagnosed as inflammatory bowel disease unclassified (IBDU). The aim of the study was to investigate the prognosis of patients initially diagnosed with IBDU and the disease course during the following 5 years. Methods: The Epi-IBD study is a prospective population-based cohort of 1289 IBD patients diagnosed in centers across Europe. Clinical data were captured prospectively throughout the follow-up period. Results: Overall, 476 (37%) patients were initially diagnosed with CD, 701 (54%) with UC, and 112 (9%) with IBDU. During follow-up, 28 (25%) IBDU patients were changed diagnoses to either UC (n = 20, 71%) or CD (n = 8, 29%) after a median of 6 months (interquartile range: 4–12), while 84 (7% of the total cohort) remained IBDU. A total of 17 (15%) IBDU patients were hospitalized for their IBD during follow-up, while 8 (7%) patients underwent surgery. Most surgeries (n = 6, 75%) were performed on patients whose diagnosis was later changed to UC; three of these colectomies led to a definitive diagnosis of UC. Most patients (n = 107, 96%) received 5-aminosalicylic acid, while 11 (10%) patients received biologicals, of whom five remained classified as IBDU. Conclusions: In a population-based inception cohort, 7% of IBD patients were not given a definitive diagnosis of IBD after 5 years of follow-up. One in four patients with IBDU eventually was classified as CD or UC. Overall, the disease course and medication burden in IBDU patients were mild.

Original languageEnglish
Pages (from-to)996-1003
Number of pages8
JournalJournal of Gastroenterology and Hepatology (Australia)
Volume34
Issue number6
DOIs
Publication statusPublished - Jun 1 2019

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Inflammatory Bowel Diseases
Population
Ulcerative Colitis
Crohn Disease
Mesalamine
Colectomy
Delayed Diagnosis

Keywords

  • inflammatory bowel disease unclassified
  • prognosis
  • treatment

ASJC Scopus subject areas

  • Hepatology
  • Gastroenterology

Cite this

Disease course of inflammatory bowel disease unclassified in a European population-based inception cohort : An Epi-IBD study. / for the Epi-IBD group.

In: Journal of Gastroenterology and Hepatology (Australia), Vol. 34, No. 6, 01.06.2019, p. 996-1003.

Research output: Contribution to journalArticle

@article{20102b958a81462e9e2baa23e317a775,
title = "Disease course of inflammatory bowel disease unclassified in a European population-based inception cohort: An Epi-IBD study",
abstract = "Background and Aim: A definitive diagnosis of Crohn's disease (CD) or ulcerative colitis (UC) is not always possible, and a proportion of patients will be diagnosed as inflammatory bowel disease unclassified (IBDU). The aim of the study was to investigate the prognosis of patients initially diagnosed with IBDU and the disease course during the following 5 years. Methods: The Epi-IBD study is a prospective population-based cohort of 1289 IBD patients diagnosed in centers across Europe. Clinical data were captured prospectively throughout the follow-up period. Results: Overall, 476 (37{\%}) patients were initially diagnosed with CD, 701 (54{\%}) with UC, and 112 (9{\%}) with IBDU. During follow-up, 28 (25{\%}) IBDU patients were changed diagnoses to either UC (n = 20, 71{\%}) or CD (n = 8, 29{\%}) after a median of 6 months (interquartile range: 4–12), while 84 (7{\%} of the total cohort) remained IBDU. A total of 17 (15{\%}) IBDU patients were hospitalized for their IBD during follow-up, while 8 (7{\%}) patients underwent surgery. Most surgeries (n = 6, 75{\%}) were performed on patients whose diagnosis was later changed to UC; three of these colectomies led to a definitive diagnosis of UC. Most patients (n = 107, 96{\%}) received 5-aminosalicylic acid, while 11 (10{\%}) patients received biologicals, of whom five remained classified as IBDU. Conclusions: In a population-based inception cohort, 7{\%} of IBD patients were not given a definitive diagnosis of IBD after 5 years of follow-up. One in four patients with IBDU eventually was classified as CD or UC. Overall, the disease course and medication burden in IBDU patients were mild.",
keywords = "inflammatory bowel disease unclassified, prognosis, treatment",
author = "{for the Epi-IBD group} and Johan Burisch and Zammit, {Stefania Chetcuti} and Pierre Ellul and Svetlana Turcan and Dana Duricova and Martin Bortlik and Andersen, {Karina Winther} and Vibeke Andersen and Kaimakliotis, {Ioannis P.} and Mathurin Fumery and Corinne Gower-Rousseau and Giulia Girardin and Daniela Valpiani and Adrian Goldis and Marko Brinar and Silvija Čuković-Čavka and Pia Oksanen and Pekka Collin and Luisa Barros and Fernando Magro and Ravi Misra and Naila Arebi and Carl Eriksson and Jonas Halfvarson and Kievit, {Hendrika Adriana Linda} and Natalia Pedersen and Jens Kjeldsen and Sally Myers and Shaji Sebastian and Katsanos, {Konstantinos H.} and Christodoulou, {Dimitrios K.} and J{\'o}nger{\dh} Midjord and Nielsen, {K{\'a}ri Rubek} and Gediminas Kiudelis and Limas Kupcinskas and Inna Nikulina and Elena Belousova and Doron Schwartz and Selwyn Odes and Riina Salupere and Amalia Carmona and Pineda, {Juan R.} and Zsuzsanna Vegh and P. Lakatos and Ebbe Langholz and Pia Munkholm",
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T1 - Disease course of inflammatory bowel disease unclassified in a European population-based inception cohort

T2 - An Epi-IBD study

AU - for the Epi-IBD group

AU - Burisch, Johan

AU - Zammit, Stefania Chetcuti

AU - Ellul, Pierre

AU - Turcan, Svetlana

AU - Duricova, Dana

AU - Bortlik, Martin

AU - Andersen, Karina Winther

AU - Andersen, Vibeke

AU - Kaimakliotis, Ioannis P.

AU - Fumery, Mathurin

AU - Gower-Rousseau, Corinne

AU - Girardin, Giulia

AU - Valpiani, Daniela

AU - Goldis, Adrian

AU - Brinar, Marko

AU - Čuković-Čavka, Silvija

AU - Oksanen, Pia

AU - Collin, Pekka

AU - Barros, Luisa

AU - Magro, Fernando

AU - Misra, Ravi

AU - Arebi, Naila

AU - Eriksson, Carl

AU - Halfvarson, Jonas

AU - Kievit, Hendrika Adriana Linda

AU - Pedersen, Natalia

AU - Kjeldsen, Jens

AU - Myers, Sally

AU - Sebastian, Shaji

AU - Katsanos, Konstantinos H.

AU - Christodoulou, Dimitrios K.

AU - Midjord, Jóngerð

AU - Nielsen, Kári Rubek

AU - Kiudelis, Gediminas

AU - Kupcinskas, Limas

AU - Nikulina, Inna

AU - Belousova, Elena

AU - Schwartz, Doron

AU - Odes, Selwyn

AU - Salupere, Riina

AU - Carmona, Amalia

AU - Pineda, Juan R.

AU - Vegh, Zsuzsanna

AU - Lakatos, P.

AU - Langholz, Ebbe

AU - Munkholm, Pia

PY - 2019/6/1

Y1 - 2019/6/1

N2 - Background and Aim: A definitive diagnosis of Crohn's disease (CD) or ulcerative colitis (UC) is not always possible, and a proportion of patients will be diagnosed as inflammatory bowel disease unclassified (IBDU). The aim of the study was to investigate the prognosis of patients initially diagnosed with IBDU and the disease course during the following 5 years. Methods: The Epi-IBD study is a prospective population-based cohort of 1289 IBD patients diagnosed in centers across Europe. Clinical data were captured prospectively throughout the follow-up period. Results: Overall, 476 (37%) patients were initially diagnosed with CD, 701 (54%) with UC, and 112 (9%) with IBDU. During follow-up, 28 (25%) IBDU patients were changed diagnoses to either UC (n = 20, 71%) or CD (n = 8, 29%) after a median of 6 months (interquartile range: 4–12), while 84 (7% of the total cohort) remained IBDU. A total of 17 (15%) IBDU patients were hospitalized for their IBD during follow-up, while 8 (7%) patients underwent surgery. Most surgeries (n = 6, 75%) were performed on patients whose diagnosis was later changed to UC; three of these colectomies led to a definitive diagnosis of UC. Most patients (n = 107, 96%) received 5-aminosalicylic acid, while 11 (10%) patients received biologicals, of whom five remained classified as IBDU. Conclusions: In a population-based inception cohort, 7% of IBD patients were not given a definitive diagnosis of IBD after 5 years of follow-up. One in four patients with IBDU eventually was classified as CD or UC. Overall, the disease course and medication burden in IBDU patients were mild.

AB - Background and Aim: A definitive diagnosis of Crohn's disease (CD) or ulcerative colitis (UC) is not always possible, and a proportion of patients will be diagnosed as inflammatory bowel disease unclassified (IBDU). The aim of the study was to investigate the prognosis of patients initially diagnosed with IBDU and the disease course during the following 5 years. Methods: The Epi-IBD study is a prospective population-based cohort of 1289 IBD patients diagnosed in centers across Europe. Clinical data were captured prospectively throughout the follow-up period. Results: Overall, 476 (37%) patients were initially diagnosed with CD, 701 (54%) with UC, and 112 (9%) with IBDU. During follow-up, 28 (25%) IBDU patients were changed diagnoses to either UC (n = 20, 71%) or CD (n = 8, 29%) after a median of 6 months (interquartile range: 4–12), while 84 (7% of the total cohort) remained IBDU. A total of 17 (15%) IBDU patients were hospitalized for their IBD during follow-up, while 8 (7%) patients underwent surgery. Most surgeries (n = 6, 75%) were performed on patients whose diagnosis was later changed to UC; three of these colectomies led to a definitive diagnosis of UC. Most patients (n = 107, 96%) received 5-aminosalicylic acid, while 11 (10%) patients received biologicals, of whom five remained classified as IBDU. Conclusions: In a population-based inception cohort, 7% of IBD patients were not given a definitive diagnosis of IBD after 5 years of follow-up. One in four patients with IBDU eventually was classified as CD or UC. Overall, the disease course and medication burden in IBDU patients were mild.

KW - inflammatory bowel disease unclassified

KW - prognosis

KW - treatment

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