BACKGROUND: Inflammatory bowel disease (IBD) places a significant burden on health-care systems because of its chronicity and need for expensive therapies and surgery. With increasing use of biological therapies, contemporary data on IBD health-care costs are important for those responsible for allocating resources in Europe. To our knowledge, no prospective long-term analysis of the health-care costs of patients with IBD in the era of biologicals has been done in Europe. We aimed to investigate cost profiles of a pan-European, community-based inception cohort during 5 years of follow-up. METHODS: The Epi-IBD cohort is a community-based, prospective inception cohort of unselected patients with IBD diagnosed in 2010 at centres in 20 European countries plus Israel. Incident patients who were diagnosed with IBD according to the Copenhagen Diagnostic Criteria between Jan 1, and Dec 31, 2010, and were aged 15 years or older the time of diagnosis were prospectively included. Data on clinical characteristics and direct costs (investigations and outpatient visits, blood tests, treatments, hospitalisations, and surgeries) were collected prospectively using electronic case-report forms. Patient-level costs incorporated procedures leading to the initial diagnosis of IBD and costs of IBD management during the 5-year follow-up period. Costs incurred by comorbidities and unrelated to IBD were excluded. We grouped direct costs into the following five categories: investigations (including outpatient visits and blood tests), conventional medical treatment, biological therapy, hospitalisation, and surgery. FINDINGS: The study population consisted of 1289 patients with IBD, with 1073 (83%) patients from western Europe and 216 (17%) from eastern Europe. 488 (38%) patients had Crohn's disease, 717 (56%) had ulcerative colitis, and 84 (6%) had IBD unclassified. The mean cost per patient-year during follow-up for patients with IBD was €2609 (SD 7389; median €446 [IQR 164-1849]). The mean cost per patient-year during follow-up was €3542 (8058; median €717 [214-3512]) for patients with Crohn's disease, €2088 (7058; median €408 [133-1161]) for patients with ulcerative colitis, and €1609 (5010; median €415 [92-1228]) for patients with IBD unclassified (p<0·0001). Costs were highest in the first year and then decreased significantly during follow-up. Hospitalisations and diagnostic procedures accounted for more than 50% of costs during the first year. However, in subsequent years there was a steady increase in expenditure on biologicals, which accounted for 73% of costs in Crohn's disease and 48% in ulcerative colitis, in year 5. The mean annual cost per patient-year for biologicals was €866 (SD 3056). The mean yearly costs of biological therapy were higher in patients with Crohn's disease (€1782 [SD 4370]) than in patients with ulcerative colitis (€286 [1427]) or IBD unclassified (€521 [2807]; p<0·0001). INTERPRETATION: Overall direct expenditure on health care decreased over a 5-year follow-up period. This period was characterised by increasing expenditure on biologicals and decreasing expenditure on conventional medical treatments, hospitalisations, and surgeries. In light of the expenditures associated with biological therapy, cost-effective treatment strategies are needed to reduce the economic burden of inflammatory bowel disease. FUNDING: Kirsten og Freddy Johansens Fond and Nordsjællands Hospital Forskningsråd.

1st Department of Medicine Semmelweis University Budapest Hungary; Division of Gastroenterology McGill University Health Center Montreal QC Canada

Azienda USL Toscana Centro Florence Italy

Clinic of Gastroenterology Victor Babeş University of Medicine Timisoara Romania

Department of Gastroenterology and Alimentary Tract Surgery Tampere University Hospital Tampere Finland; Faculty of Medicine and Health Technology Tampere University Tampere Finland

Department of Gastroenterology Centro Hospitalar de São João EPE Porto Portugal

Department of Gastroenterology Centro Hospitalar de São João EPE Porto Portugal; Department of Biomedicine Institute of Pharmacology Faculty of Medicine Porto University Porto Portugal

Department of Gastroenterology Faculty of Medicine and Health Örebro University Örebro Sweden

Department of Gastroenterology Hepatology and Nutrition University Hospital Centre Zagreb Zagreb Croatia

Department of Gastroenterology Hepatology and Nutrition University Hospital Centre Zagreb Zagreb Croatia; School of Medicine University of Zagreb Zagreb Croatia

Department of Gastroenterology Herlev and Gentofte Hospital University of Copenhagen Copenhagen Denmark

Department of Gastroenterology Hospital Povisa Vigo Spain

Department of Gastroenterology Instituto de Investigación Sanitaria Galicia Sur Hospital Alvaro Cunqueiro Xerencia Xestion Integrada de Vigo Vigo Spain

Department of Gastroenterology Medical Academy Lithuanian University of Health Sciences Kaunas Lithuania

Department of Gastroenterology Medical Academy Lithuanian University of Health Sciences Kaunas Lithuania; Institute for Digestive Research Medical Academy Lithuanian University of Health Sciences Kaunas Lithuania

Department of Gastroenterology Moscow Regional Research Clinical Institute Moscow Russia

Department of Gastroenterology North Zealand University Hospital Frederikssund Denmark

Department of Gastroenterology State University of Medicine and Pharmacy of the Republic of Moldova Chisinau Moldova

Department of Hepatology and Gastroenterology Aarhus University Hospital Aarhus Denmark

Department of Internal Medicine Ben Gurion University of the Negev Beer Sheva Israel

Department of Internal Medicine Csolnoky Ferenc Regional Hospital Veszprem Hungary

Department of Medicine Herning Central Hospital Herning Denmark

Department of Public Health Ben Gurion University of the Negev Beer Sheva Israel

Department of Surgical Oncological and Gastroenterological Sciences Azienda University of Padua Padua Italy

Division of Gastroenterology Mater Dei Hospital Msida Malta

Division of Gastroenterology School of Health Sciences University Hospital and University of Ioannina Ioannina Greece

Division of Gastroenterology Tartu University Hospital University of Tartu Tartu Estonia

Faculty of Health Sciences Ben Gurion University of the Negev Beer Sheva Israel; Department of Gastroenterology and Liver Diseases Soroka Medical Centre Beer Sheva Israel

Faculty of Medicine and Health Technology Tampere University Tampere Finland

Gastroenterology Department Odense University Hospital Odense Denmark

Gastroenterology Department Slagelse Hospital Slagelse Denmark

Gastroenterology Unit Bufalini Hospital Cesena AUSL della Romagna Rimini Italy

Gastroenterology Unit Epimad Registry CHU Amiens Sud Avenue Laennec Salouel Amiens University Hospital Amiens France

Hull University Teaching Hospitals NHS Trust Hull UK; Hull York Medical School Hull UK

Inflammatory Bowel Disease Clinical and Research Centre ISCARE Prague Czech Republic

Inflammatory Bowel Disease Clinical and Research Centre ISCARE Prague Czech Republic; Institute of Pharmacology 1st Faculty of Medicine Charles University Prague Prague Czech Republic

Inflammatory Bowel Disease Department Imperial College London London UK

IRS Center Soenderjylland University Hospital of Southern Denmark Aabenraa Denmark

IRS Center Soenderjylland University Hospital of Southern Denmark Aabenraa Denmark; Institute of Molecular Medicine University of Southern Denmark Odense Denmark

Medical Department The National Hospital of the Faroe Islands Torshavn Faroe Islands

Nicosia Private Practice Nicosia Cyprus

Public Health Epidemiology and Economic Health Registre Epimad Lille University Lille France; Lille Inflammation Research International Center LIRIC Lille University Lille France

UO Gastroenterologia ed Endoscopia Digestiva Hospital Morgagni Pierantoni Forlì Italy

References provided by Crossref.org

Barriers in inflammatory bowel disease care in Central and Eastern Europe: a region-specific analysis