title: Information resources used by patients with inflammatory bowel disease: Satisfaction, expectations and information gaps.
abstract: OBJECTIVE
  Information received by IBD patients about their disease is of particular importance. The objective of the study was to determine the information resources these patients used, together with their perceived information gaps and expected preferences.
  
  
  METHODS
  A prospective, observational, cross-sectional study conducted on IBD patients attending 13 Spanish hospitals during 2008. Patients completed a semi-structured 52-question survey.
  
  
  RESULTS
  Survey was adequately completed by 379 of 385 patients (98%), of whom 57% had Crohn's disease and 43% ulcerative colitis. Mean patient age was 37.9 years (range, 16-76 years). Gastroenterologists were the most commonly used resource (98%), followed by the Internet (60%), and general practitioners (50%). More than 90% reported good to excellent satisfaction with gastroenterologists, nurses, and patients' associations. Only 56% considered their information needs to be covered. The Internet was mostly used by young patients and those with a high education level. In the future, 85% of the patients would like to receive information from the gastroenterologists, and 92% by face-to-face interviews. Patients mainly want additional information on treatment (medical and surgical), clinical manifestations, cancer, and mortality risks. They also think that they are poorly informed about their social and work rights, risks of cancer and death, and research trials.
  
  
  CONCLUSIONS
  Patients with IBD use and prefer gastroenterologists as the main source of information, but only half of them consider their information needs to be covered.
authors: Digestive Disease Department, Hospital Arnau de Vilanova de Valencia, Valencia, Spain.
authors: Ignacio
authors: I
authors: Catalán-Serra
authors: Digestive Disease Department, Hospital General Universitario de Valencia, Valencia, Spain.
authors: Jose María
authors: JM
authors: Huguet-Malavés
authors: Digestive Disease Department, Hospital Clinic, Universitat de Valencia, Valencia, Spain.
authors: Miguel
authors: M
authors: Mínguez
authors: Digestive Disease Department, Hospital Morales Meseguer, Murcia, Spain.
authors: Emilio
authors: E
authors: Torrella
authors: Digestive Disease Department, Hospital Universitario Doctor Peset, Valencia, Spain.
authors: Jose María
authors: JM
authors: Paredes
authors: Servicio de Digestivo, Hospital Universitario de Elche, Elche, Alicante, Spain.
authors: Narciso
authors: N
authors: Vázquez
authors: Department of Medicine, Unit of Gastroenterology, Hospital Lluís Alcanyis de Xàtiva, Xàtiva, Valencia, Spain.
authors: Jose Joaquín
authors: JJ
authors: Ramírez
authors: Digestive Disease Department, Hospital General Universitario de Albacete, Albacete, Spain.
authors: Félix
authors: F
authors: Calvo
authors: Digestive Disease Medicine Department, Hospital Universitari i Politécnic La Fe, Valencia, Spain.
authors: Pilar
authors: P
authors: Nos
authors: Digestive Disease Medicine Department, Hospital General Universitario de Alicante, Alicante, Spain.
authors: Ana
authors: A
authors: Gutiérrez
authors: Digestive Disease Department, Hospital General Universitario de Castellón, Castellón, Spain.
authors: Antonio
authors: A
authors: Palau
authors: Digestive Disease Department, Hospital de Sagunto, Valencia, Spain.
authors: Javier
authors: J
authors: Cortés
authors: Facultad de Ciencias de Actividad Física y del Deporte, Universidad Católica de Valencia San Vicente Mártir, Valencia, Spain.
authors: Pilar
authors: P
authors: Ramón-Monllor
authors: Digestive Disease Department, Hospital de Manises, Valencia, Spain.
authors: Joaquín
authors: J
authors: Hinojosa
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D005762:Gastroenterology; D058006:General Practice; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000523:psychology; D057226:Information Seeking Behavior; D020407:Internet / Q000706:statistics & numerical data; D008875:Middle Aged; D024802:Nurse's Role; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D010819:Physician's Role; D011446:Prospective Studies; D012657:Self-Help Groups; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Colitis ulcerosa; Crohn's disease; Enfermedad de Crohn; Enfermedad inflamatoria intestinal; Inflammatory bowel disease; Información; Information; Internet; Pacientes; Patients; Prioridades; Priorities; Satisfacción; Satisfaction; Ulcerative colitis