title: Health-related quality of life improves during one year of medical and surgical treatment in a European population-based inception cohort of patients with inflammatory bowel disease--an ECCO-EpiCom study.
abstract: OBJECTIVE
  Health-related quality of life (HRQoL) is impaired in patients with Inflammatory Bowel Disease (IBD). The aim was prospectively to assess and validate the pattern of HRQoL in an unselected, population-based inception cohort of IBD patients from Eastern and Western Europe.
  
  
  METHODS
  The EpiCom inception cohort consists of 1560 IBD patients from 31 European centres covering a background population of approximately 10.1 million. Patients answered the disease specific Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and generic Short Form 12 (SF-12) questionnaire at diagnosis and after one year of follow-up.
  
  
  RESULTS
  In total, 1079 patients were included in this study. Crohn's disease (CD) patients mean SIBDQ scores improved from 45.3 to 55.3 in Eastern Europe and from 44.9 to 53.6 in Western Europe. SIBDQ scores for ulcerative colitis (UC) patients improved from 44.9 to 57.4 and from 48.8 to 55.7, respectively. UC patients needing surgery or biologicals had lower SIBDQ scores before and after compared to the rest, while biological therapy improved SIBDQ scores in CD. CD and UC patients in both regions improved all SF-12 scores. Only Eastern European UC patients achieved SF-12 summary scores equal to or above the normal population.
  
  
  CONCLUSIONS
  Medical and surgical treatment improved HRQoL during the first year of disease. The majority of IBD patients in both Eastern and Western Europe reported a positive perception of disease-specific but not generic HRQoL. Biological therapy improved HRQoL in CD patients, while UC patients in need of surgery or biological therapy experienced lower perceptions of HRQoL than the rest.
authors.affiliation: Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark. Electronic address: burisch@dadlnet.dk.
authors.forename: J
authors.initials: J
authors.lastname: Burisch
authors.affiliation: Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark.
authors.forename: P
authors.initials: P
authors.lastname: Weimers
authors.affiliation: Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark.
authors.forename: N
authors.initials: N
authors.lastname: Pedersen
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Center Zagreb, University of Zagreb School of Medicine, Zagreb, Croatia.
authors.forename: S
authors.initials: S
authors.lastname: Cukovic-Cavka
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Center Zagreb, University of Zagreb School of Medicine, Zagreb, Croatia.
authors.forename: B
authors.initials: B
authors.lastname: Vucelic
authors.affiliation: Nicosia Private Practice, Nicosia, Cyprus.
authors.forename: I
authors.initials: I
authors.lastname: Kaimakliotis
authors.affiliation: IBD Center ISCARE, Charles University, Prague, Czech Republic.
authors.forename: D
authors.initials: D
authors.lastname: Duricova
authors.affiliation: IBD Center ISCARE, Charles University, Prague, Czech Republic.
authors.forename: M
authors.initials: M
authors.lastname: Bortlik
authors.affiliation: Gastroenterology Department, Hospital České Budějovice, České Budějovice, Czech Republic.
authors.forename: O
authors.initials: O
authors.lastname: Shonová
authors.affiliation: Department of Medicine, Amager Hospital, Amager, Denmark.
authors.forename: I
authors.initials: I
authors.lastname: Vind
authors.affiliation: Department of Medicine, Amager Hospital, Amager, Denmark.
authors.forename: S
authors.initials: S
authors.lastname: Avnstrøm
authors.affiliation: Department of Medicine, Herning Central Hospital, Herning, Denmark.
authors.forename: N
authors.initials: N
authors.lastname: Thorsgaard
authors.affiliation: Medical Department, Viborg Regional Hospital, Viborg, Denmark.
authors.forename: S
authors.initials: S
authors.lastname: Krabbe
authors.affiliation: 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.
authors.forename: V
authors.initials: V
authors.lastname: Andersen
authors.affiliation: Department of Medicine V, Hepatology and Gastroenterology, Aarhus University Hospital, Aarhus, Denmark.
authors.forename: J F
authors.initials: JF
authors.lastname: Dahlerup
authors.affiliation: Department of Medical Gastroenterology, Odense University Hospital, Odense, Denmark.
authors.forename: J
authors.initials: J
authors.lastname: Kjeldsen
authors.affiliation: Division of Endocrinology and Gastroenterology, Tartu University Hospital, Tartu, Estonia.
authors.forename: R
authors.initials: R
authors.lastname: Salupere
authors.affiliation: Medical Department, The National Hospital of the Faroe Islands, Torshavn, Faroe Islands.
authors.forename: J
authors.initials: J
authors.lastname: Olsen
authors.affiliation: Medical Department, The National Hospital of the Faroe Islands, Torshavn, Faroe Islands.
authors.forename: K R
authors.initials: KR
authors.lastname: Nielsen
authors.affiliation: Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland.
authors.forename: P
authors.initials: P
authors.lastname: Manninen
authors.affiliation: Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland.
authors.forename: P
authors.initials: P
authors.lastname: Collin
authors.affiliation: 1st Division of Internal Medicine and Division of Gastroenterology, Medical School, University of Ioannina, Ioannina, Greece.
authors.forename: K H
authors.initials: KH
authors.lastname: Katsanos
authors.affiliation: 1st Division of Internal Medicine and Division of Gastroenterology, Medical School, University of Ioannina, Ioannina, Greece.
authors.forename: E V
authors.initials: EV
authors.lastname: Tsianos
authors.affiliation: Medical Department, Dronning Ingrids Hospital, Nuuk, Greenland.
authors.forename: K
authors.initials: K
authors.lastname: Ladefoged
authors.affiliation: Department of Medicine, Csolnoky F. Province Hospital, Veszprem, Hungary.
authors.forename: L
authors.initials: L
authors.lastname: Lakatos
authors.affiliation: Department of Internal Medicine, Section of Gastroenterology and Hepatology, The National University Hospital, Reykjavik, Iceland.
authors.forename: G
authors.initials: G
authors.lastname: Ragnarsson
authors.affiliation: Department of Internal Medicine, Section of Gastroenterology and Hepatology, The National University Hospital, Reykjavik, Iceland.
authors.forename: E
authors.initials: E
authors.lastname: Björnsson
authors.affiliation: Department of Gastroenterology, Adelaide and Meath Hospital, TCD, Dublin, Ireland.
authors.forename: Y
authors.initials: Y
authors.lastname: Bailey
authors.affiliation: Department of Gastroenterology, Adelaide and Meath Hospital, TCD, Dublin, Ireland.
authors.forename: C
authors.initials: C
authors.lastname: O'Morain
authors.affiliation: Department of Gastroenterology and Hepatology, Soroka Medical Center and Ben Gurion University of the Negev, Beer Sheva, Israel; Department of Gastroenterology and Hepatology, Ben Gurion University of the Negev, Beer Sheva, Israel.
authors.forename: D
authors.initials: D
authors.lastname: Schwartz
authors.affiliation: Department of Gastroenterology and Hepatology, Soroka Medical Center and Ben Gurion University of the Negev, Beer Sheva, Israel; Department of Gastroenterology and Hepatology, Ben Gurion University of the Negev, Beer Sheva, Israel.
authors.forename: S
authors.initials: S
authors.lastname: Odes
authors.affiliation: U.O. Gastroenterologia ed Endoscopia Digestiva, Ospedale Morgagni - Pierantoni, Forlì, Italy; On behalf of the EpiCom Northern Italy centre based in Crema & Cremona, Firenze, Forlì, Padova and Reggio Emilia, Italy.
authors.forename: D
authors.initials: D
authors.lastname: Valpiani
authors.affiliation: U.O. Medicina 3° e Gastroenterologia, Azienda Ospedaliera Arcispedale S. Maria Nuova, Reggio Emilia, Italy; On behalf of the EpiCom Northern Italy centre based in Crema & Cremona, Firenze, Forlì, Padova and Reggio Emilia, Italy.
authors.forename: M C
authors.initials: MC
authors.lastname: Boni
authors.affiliation: Institute for Digestive Research, Lithuanian University of Health Sciences, Kaunas, Lithuania.
authors.forename: L
authors.initials: L
authors.lastname: Jonaitis
authors.affiliation: Institute for Digestive Research, Lithuanian University of Health Sciences, Kaunas, Lithuania.
authors.forename: L
authors.initials: L
authors.lastname: Kupcinskas
authors.affiliation: Department of Gastroenterology, State University of Medicine and Pharmacy of the Republic of Moldova, Chisinau, Republic of Moldova.
authors.forename: S
authors.initials: S
authors.lastname: Turcan
authors.affiliation: Hospital de Vale de Sousa, Porto, Portugal.
authors.forename: L
authors.initials: L
authors.lastname: Barros
authors.affiliation: Department of Gastroenterology, Hospital São João, Porto, Portugal; Institute of Pharmacology and Therapeutics, Faculty of Medicine, University of Porto, Porto, Portugal; IBMC - Institute for Molecular and Cell Biology, University of Porto, Porto, Portugal.
authors.forename: F
authors.initials: F
authors.lastname: Magro
authors.affiliation: Clinic of Gastroenterology, University of Medicine 'Victor Babes', Timisoara, Romania.
authors.forename: D
authors.initials: D
authors.lastname: Lazar
authors.affiliation: Clinic of Gastroenterology, University of Medicine 'Victor Babes', Timisoara, Romania.
authors.forename: A
authors.initials: A
authors.lastname: Goldis
authors.affiliation: Department of Gastroenterology, Moscow Regional Research Clinical Institute, Moscow, Russian Federation.
authors.forename: I
authors.initials: I
authors.lastname: Nikulina
authors.affiliation: Department of Gastroenterology, Moscow Regional Research Clinical Institute, Moscow, Russian Federation.
authors.forename: E
authors.initials: E
authors.lastname: Belousova
authors.affiliation: Gastroenterology Department, POVISA Hospital, Vigo, Spain.
authors.forename: A
authors.initials: A
authors.lastname: Fernandez
authors.affiliation: Gastroenterology Department, Complexo Hospitalario Universitario de Vigo, Vigo, Spain.
authors.forename: L
authors.initials: L
authors.lastname: Sanroman
authors.affiliation: Division of Gastroenterology and Hepatology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden; Department of Gastroenterology/UHL, County Council of Östergötland, Linköping, Sweden.
authors.forename: S
authors.initials: S
authors.lastname: Almer
authors.affiliation: Department of Medicine, Division of Gastroenterology, Örebro University Hospital, Örebro, Sweden.
authors.forename: Y
authors.initials: Y
authors.lastname: Zhulina
authors.affiliation: Department of Medicine, Division of Gastroenterology, Örebro University Hospital, Örebro, Sweden; School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
authors.forename: J
authors.initials: J
authors.lastname: Halfvarson
authors.affiliation: St. Mark's Hospital, Imperial College London, London, UK.
authors.forename: N
authors.initials: N
authors.lastname: Arebi
authors.affiliation: Hull and East Yorkshire NHS Trust & Hull and York Medical School, Hull Royal Infirmary, Hull, UK; Hull and York Medical School, Hull Royal Infirmary, Hull, UK.
authors.forename: T
authors.initials: T
authors.lastname: Diggory
authors.affiliation: Hull and East Yorkshire NHS Trust & Hull and York Medical School, Hull Royal Infirmary, Hull, UK; Hull and York Medical School, Hull Royal Infirmary, Hull, UK.
authors.forename: S
authors.initials: S
authors.lastname: Sebastian
authors.affiliation: 1st Department of Medicine, Semmelweis University, Budapest, Hungary.
authors.forename: P L
authors.initials: PL
authors.lastname: Lakatos
authors.affiliation: Department of Medical Gastroenterology, Gentofte Hospital, Copenhagen, Denmark.
authors.forename: E
authors.initials: E
authors.lastname: Langholz
authors.affiliation: Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark.
authors.forename: P
authors.initials: P
authors.lastname: Munkholm
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D013505:Digestive System Surgical Procedures / Q000379:methods*; D019468:Disease Management; D005060:Europe / Q000453:epidemiology; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D009017:Morbidity / Q000639:trends; D011159:Population Surveillance; D011379:Prognosis; D011446:Prospective Studies; D011788:Quality of Life; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Disease course; Epidemiology;; Inception cohort;; Quality of life;