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

Johan Burisch (1) , Stefania Chetcuti Zammit (2) , Pierre Ellul (2) , Svetlana Turcan (3) , Dana Duricova (4) , Martin Bortlik (4, 5) , Karina Winther Andersen (6) , Vibeke Andersen (6, 7, 8) , Ioannis P. Kaimakliotis , Mathurin Fumery (9, 10) , Corinne Gower-Rousseau (10, 11, 12) , Giulia Girardin (13) , Daniela Valpiani (14) , Adrian Goldis (15) , Marko Brinar (16) , Silvija Cukovic-Cavka (16) , Pia Oksanen (17, 18) , Pekka Collin (17, 18) , Luísa Barros (19) , Fernando Magro (19, 20) , Ravi Misra (21) , Naila Arebi (21) , Carl Eriksson (22) , Jonas Halfvarson (22) , Hendrika Adriana Linda Kievit (23) , Natalia Pedersen , Jens Kjeldsen (24) , Sally Myers (25) , Shaji Sebastian (25) , Konstantinos H. Katsanos (26) , Dimitrios K. Christodoulou (26) , Jongerd Midjord (27) , Kari Rubek Nielsen (27) , Gediminas Kiudelis (28) , Limas Kupcinskas (28) , Inna Nikulina (29) , Elena Belousova (29) , Doron Schwartz (30) , Selwyn Odes (30) , Riina Salupere (31) , Amalia Carmona , Juan R. Pineda (32) , Zsuzsanna Végh (33) , Peter L. Lakatos (33, 34) , Ebbe Langholz (1) , Pia Munkholm (1)

1 UCPH - University of Copenhagen = Københavns Universitet
2 Mater Dei Hospital [Malta]
3 University of Moldova
4 ISCARE
5 UK - Univerzita Karlova [Praha, Česká republika] = Charles University [Prague, Czech Republic]
6 Viborg Hospital
7 Regional Hospital West Jutland [Denmark]
8 SDU - University of Southern Denmark
9 CHU Amiens-Picardie
10 Registre EPIMAD
11 Service d'Epidémiologie et de Santé Publique [Lille]
12 INFINITE (Ex-Liric) - Institute for Translational Research in Inflammation - U 1286
13 Unipd - Università degli Studi di Padova = University of Padua
14 G.B. Morgagni-Pierantoni Hospital [Forlì, Italy]
15 UMFT - Victor Babeş University of Medicine and Pharmacy
16 University Hospital Centre Zagreb
17 Tampere University Hospital
18 University of Tampere [Finland]
19 Hospital de São João [Porto]
20 Universidade do Porto = University of Porto
21 Imperial College London
22 Örebro University
23 Herning Hospital
24 OUH - Odense University Hospital
25 Hull and East Yorkshire Eye Hospital
26 University Hospital of Ioannina
27 National Hospital of the Faroe Islands [Tórshavn, Faroe Islands]
28 LSMU - Lithuanian University of health Sciences
29 MONICA - Moscow Regional Research Clinical Institute
30 BGU - Ben-Gurion University of the Negev
31 University of Tartu
32 Instituto de Investigación Sanitaria Galicia Sur [Vigo, Spain]
33 Semmelweis University [Budapest]
34 MUHC - McGill University Health Center [Montreal]

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.

Mots clés: inflammatory bowel disease unclassified; prognosis; treatment

Domaines: Sciences du Vivant [q-bio]

Johan Burisch, Stefania Chetcuti Zammit, Pierre Ellul, Svetlana Turcan, Dana Duricova, et al.. Disease course of inflammatory bowel disease unclassified in a European population-based inception cohort: An Epi-IBD study. Journal of Gastroenterology and Hepatology, 2019, 34 (6), pp.996-1003. ⟨10.1111/jgh.14563⟩. ⟨hal-03552292⟩