title: Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort?
abstract: BACKGROUND
  Inflammatory Bowel Disease (IBD) patients are confronted with needs and concerns related to their disease.
  
  
  OBJECTIVE
  To explore information expectations of patients included in a national bilingual IBD cohort in Switzerland (SIBDC).
  
  
  METHODS
  This is a mixed-methods study, comprising 1) a semi-narrative survey sent to 1506 patients from the SIBDC and 2) two focus groups conducted with 14 patients to explore and assess the relevance of the survey's findings. Data collected within the framework of the SIBDC was used to characterize survey's responders.
  
  
  RESULTS
  728 patients (48%) replied to the survey: 52.5% females, 56% Crohn's disease (CD), 87% secondary/tertiary level educated, 70% full/part-time employed. On average, 47% of patients sought for information, regardless of the disease stage; 27% of them were dissatisfied with information received at the time of first symptoms. During flares, 43% were concerned about drugs and therapies; in remission, 57% had concerns on research and developments; 27% searched for information linked to daily disease management. Information-seeking increased when active disease, for CD with high levels of perceived stress (OR = 2.47; p = 0.003), and for all with higher posttraumatic stress symptoms. The focus groups confirmed a perceived lack of information about general functioning, disease course, treatments and their risks, extra-intestinal symptoms and manifestations.
  
  
  CONCLUSIONS
  Information remains insufficient for IBD patients. Lack of information in specific domains can potentially cause stress and hinder detection of symptoms. Better information should be considered as a potentially important component in improving patients' outcomes in IBD.
authors.affiliation: Institute of Social & Preventive Medicine (IUMSP), Lausanne University Hospital, Lausanne, Switzerland.
authors.forename: Valérie
authors.initials: V
authors.lastname: Pittet
authors.affiliation: Institute of Social & Preventive Medicine (IUMSP), Lausanne University Hospital, Lausanne, Switzerland.
authors.forename: Carla
authors.initials: C
authors.lastname: Vaucher
authors.affiliation: Division of Gastroenterology & Hepatology, Lausanne University Hospital, Lausanne, Switzerland.
authors.forename: Michel H
authors.initials: MH
authors.lastname: Maillard
authors.affiliation: Division of Gastroenterology & Hepatology, Geneva University Hospital, Geneva, Switzerland.
authors.forename: Marc
authors.initials: M
authors.lastname: Girardin
authors.affiliation: Division of Gastroenterology & Hepatology, Geneva University Hospital, Geneva, Switzerland.
authors.forename: Philippe
authors.initials: P
authors.lastname: de Saussure
authors.affiliation: Institute of Social & Preventive Medicine (IUMSP), Lausanne University Hospital, Lausanne, Switzerland.
authors.forename: Bernard
authors.initials: B
authors.lastname: Burnand
authors.affiliation: Division of Gastroenterology & Hepatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland.
authors.forename: Gerhard
authors.initials: G
authors.lastname: Rogler
authors.affiliation: Crohn and Colitis Center, Clinique La Source-Beaulieu, Lausanne, Switzerland.
authors.forename: Pierre
authors.initials: P
authors.lastname: Michetti
mesh_terms: D000328:Adult; D015331:Cohort Studies; D003093:Colitis, Ulcerative / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D003424:Crohn Disease / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D003430:Cross-Sectional Studies; D005260:Female; D017144:Focus Groups; D005762:Gastroenterology / Q000379:methods; D006801:Humans; D057226:Information Seeking Behavior; D008297:Male; D008875:Middle Aged; D019303:Multilingualism; D020380:Needs Assessment; D010353:Patient Education as Topic / Q000379:methods*; D011369:Professional-Patient Relations; D012008:Recurrence; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D013557:Switzerland