title: Patients' perceptions of quality of care and follow-up in inflammatory bowel disease.
abstract: OBJECTIVE
  Quality of care (QoC) has gained increased attention in IBD. A better QoC has, historically, been linked to improved treatment outcomes. Even so, factors of equal importance to patients may be quality of life (QoL), patient-physician communication and access to care. Recent surveys suggest that IBD care in Europe is suboptimal.
  
  
  METHODS
  Patients were recruited from nine hospitals in the south-eastern and western part of Norway as a part of an observational, multicenter study In addition to clinical and socio-demographic factors; a purposely designed 26 item questionnaire was used to quantify aspects related to IBD care, including QoC. Moreover, the Fatigue Questionnaire (FQ) was used to investigate fatigue.
  
  
  RESULTS
  In total, 411 patients were included. Of these, 231 were diagnosed with CD and 180 with UC. Furthermore, 86.1% (354/411) were satisfied with the quality of IBD follow-up and only 4.1% (17/411) were dissatisfied. Most dissatisfaction was related to: lack of focus on personal relations (18.2%), HRQoL (15.1%), general practitioner knowledge of IBD (13.9%), ability to talk about important topics (7.8%), and hospital discharge communication (9.4%). Higher age and longer disease duration was associated with improved QoC scores in both UC and CD. Fatigue was associated with decreased QoC scores in both diagnoses.
  
  
  CONCLUSIONS
  Patients are satisfied with quality of care in IBD. However, communication seems to be an important area of improvement - not only related to patient-physician communication, but also to transitional communication between different health-care levels.
authors.affiliation: a Østfold University College, Health Science , Halden , Norway ;|b Department of Gastroenterology, Østfold University College, Health Science/Østfold Hospital Trust , Fredrikstad , Norway ;
authors.forename: Lars-Petter
authors.initials: LP
authors.lastname: Jelsness-Jørgensen
authors.affiliation: c Department of Research , Telemark Hospital Trust , Skien , Norway ;
authors.forename: Tomm
authors.initials: T
authors.lastname: Bernklev
authors.affiliation: d Institute of Clinical Medicine, University of Oslo , Nydalen , Oslo , Norway ;|e Department of Gastroenterology , Innlandet Hospital Trust , Gjøvik , Norway ;
authors.forename: Øistein
authors.initials: Ø
authors.lastname: Hovde
authors.affiliation: f Department of Gastroenterology , Møre and Romsdal Hospital Trust Ålesund , Ålesund , Norway ;
authors.forename: Ingrid
authors.initials: I
authors.lastname: Prytz Berset
authors.affiliation: g Department of Gastroenterology , Telemark Hospital Trust , Skien , Norway ;
authors.forename: Gert
authors.initials: G
authors.lastname: Huppertz-Hauss
authors.affiliation: h Department of Gastroenterology/University of Oslo , Oslo University Hospital, Institute of Clinical Medicine , Nydalen , Oslo , Norway ;
authors.forename: Bjørn
authors.initials: B
authors.lastname: Moum
authors.affiliation: i Department of Gastroenterology , Oslo University Hospital , Nydalen , Oslo , Norway.
authors.forename: Marte
authors.initials: M
authors.lastname: Lie Høivik
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D005221:Fatigue / Q000209:etiology; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000150:complications / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D010817:Physician-Patient Relations; D011787:Quality of Health Care; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Inflammatory bowel disease; patient centredness; quality of care