Patients’ real-world experience with inflammatory bowel disease: A cross-sectional survey in tertiary care centres from the GETAID group - CNRS - Centre national de la recherche scientifique Accéder directement au contenu
Article Dans Une Revue Digestive and Liver Disease Année : 2021

Patients’ real-world experience with inflammatory bowel disease: A cross-sectional survey in tertiary care centres from the GETAID group

1 CHRU Lille - Centre Hospitalier Régional Universitaire [CHU Lille]
2 INFINITE (Ex-Liric) - Institute for Translational Research in Inflammation - U 1286
3 Service de Gastroentérologie [Hôpital Beaujon]
4 Hôpital Nord [CHU - APHM]
5 CIC - Biotherapie - Marseille
6 CHU - Hôpital Pasteur [Nice]
7 UniCA - Université Côte d'Azur
8 CHU ST-E - Centre Hospitalier Universitaire de Saint-Etienne [CHU Saint-Etienne]
9 CHU Saint-Antoine [AP-HP]
10 LBM UMR 7203 - Laboratoire des biomolécules
11 CIC - Centre d'Investigation Clinique [Rennes]
12 NuMeCan - Nutrition, Métabolismes et Cancer
13 Centre Hospitalier Universitaire de Rennes [CHU Rennes] = Rennes University Hospital [Ponchaillou]
14 ULB - Hôpital Erasme [Bruxelles]
15 ADEN - Nutrition, Inflammation et axe Microbiote-Intestin-Cerveau
16 IRIB - Institute for Research and Innovation in Biomedicine
17 UNIROUEN - Université de Rouen Normandie
18 Service d'Hépato-Gastroentérologie [CHU Rouen]
19 CHU Estaing [Clermont-Ferrand]
20 UCA - Université Clermont Auvergne
21 CHU-Liège - Centre Hospitalier Universitaire de Liège
22 Service d'Hépatologie et de Gastroentérologie [Lyon]
23 CIRI - Centre International de Recherche en Infectiologie
24 Hôpital Cochin [AP-HP]
25 Hôpital de Hautepierre [Strasbourg]
26 IRFAC - Inserm U1113 - Interface de Recherche Fondamentale et Appliquée en Cancérologie
27 Cliniques Universitaires Saint-Luc [Bruxelles]
28 CHRU Besançon - Centre Hospitalier Régional Universitaire de Besançon
29 CHUGA - Centre Hospitalier Universitaire [CHU Grenoble]
30 NGERE - Nutrition-Génétique et Exposition aux Risques Environnementaux
31 Service d'Hépato-gastro-entérologie [CHRU Nancy]
32 CHU Toulouse - Centre Hospitalier Universitaire de Toulouse
33 EC2M3 - Early detection of Colon Cancer using Molecular Markers and Microbiota (EA 7375)
34 Service d'hépato-gastro-entérologie [APHP Henri Mondor]
35 AP-HP - Hopital Saint-Louis [AP-HP]
36 CHU Caen
37 CHU Nantes - Centre Hospitalier Universitaire de Nantes
38 CIC Bordeaux
39 Centre médico chirurgical Magellan - Hôpital Haut-Lévêque - CHU de Bordeaux
Matthieu Allez
Stephanie Viennot
  • Fonction : Auteur

Résumé

BACKGROUND: Patients’ experience with healthcare professionals could influence their clinical outcomes. AIMS: To assess inflammatory bowel disease (IBD) patients’ experience with their disease, their treatment and their relationship with their physician. METHODS: A one-week cross-sectional study was conducted in 42 IBD centres. 2011 consecutive outpatients with IBD completed an anonymous self-report questionnaire assessing their experience with and knowledge of IBD. RESULTS: A quantitative assessment of the doctor-patient relationship revealed that patients’ knowledge of IBD and IBD treatment ranged from 7.4 to 8.3 out of 10. In addition to IBD physicians, other sources of information about IBD and current treatment mainly included the internet (80% and 63%, respectively) and general practitioners (61% and 54%). Knowledge about education programmes (28%) was poor, resulting in a lack of willingness to further use these resources (25%). Concerns about IBD treatment were raised in 76% of patients, mostly related to the fear of adverse events (47%) and a lack of efficacy (33%). The need of alternative healthcare professionals was reported by 89% of the sample. CONCLUSION: In a large cohort of patients, we highlighted gaps in the management of patients with IBD regarding the need for higher-quality information and the implementation of alternative healthcare professionals.
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hal-03038260 , version 1 (24-04-2023)

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Maria Nachury, Yoram Bouhnik, Mélanie Serrero, Jerome Filippi, Xavier Roblin, et al.. Patients’ real-world experience with inflammatory bowel disease: A cross-sectional survey in tertiary care centres from the GETAID group. Digestive and Liver Disease, 2021, 53 (4), pp.434-441. ⟨10.1016/j.dld.2020.10.020⟩. ⟨hal-03038260⟩
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