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

Adult Belgium Cross-Sectional Studies Female France Health Knowledge, Attitudes, Practice Humans Inflammatory Bowel Diseases / therapy Male Middle Aged Outpatients Patient Acceptance of Health Care / psychology Physician-Patient Relations Physicians Self Report Tertiary Care Centers

Crohn's disease Inflammatory bowel disease Patients experience Ulcerative colitis

Journal

Digestive and liver disease : official journal of the Italian Society of Gastroenterology and the Italian Association for the Study of the Liver

ISSN: 1878-3562

Titre abrégé: Dig Liver Dis

Pays: Netherlands

ID NLM: 100958385

Informations de publication

Date de publication:
04 2021

Historique:

received: 17 07 2020

revised: 09 10 2020

accepted: 12 10 2020

pubmed: 15 11 2020

medline: 18 1 2022

entrez: 14 11 2020

Statut: ppublish

Résumé

Patients' experience with healthcare professionals could influence their clinical outcomes. To assess inflammatory bowel disease (IBD) patients' experience with their disease, their treatment and their relationship with their physician. 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. 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. 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.

Sections du 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.

Identifiants

DOI: 10.1016/j.dld.2020.10.020 PMID: 33187920

pubmed: 33187920

pii: S1590-8658(20)30973-7

doi: 10.1016/j.dld.2020.10.020

pii:

doi:

Types de publication

Journal Article Multicenter Study

Langues

eng

Sous-ensembles de citation

Pagination

434-441

Investigateurs

Aurelien Amiot (A)

Sara Tadbiri (S)

Charlotte Gagniere (C)

Jenny Tannoury (J)

Maria Nachury (M)

Benjamin Pariente (B)

Pauline Wils (P)

Yoram Bouhnik (Y)

Carmen Stefanescu (C)

Xavier Treton (X)

Melanie Serrero (M)

Jerome Filippi (J)

Xavier Hébuterne (X)

Nadia Arab (N)

Virginie Cluzeau (V)

Xavier Roblin (X)

Emilie Del Tedesco (ED)

Laurent Beaugerie (L)

Philippe Seksik (P)

Anne Bourrier (A)

Cecilia Landmann (C)

Julien Kirchgesner (J)

Harry Sokol (H)

Guillaume Bouguen (G)

Laurent Siproudhis (L)

Marie DeWitte (M)

Denis Franchimont (D)

Guillaume Savoye (G)

Anthony Buisson (A)

Edouard Louis (E)

Catherine Reenaers (C)

Stephane Nancey (S)

Gilles Boschetti (G)

Claire Gay (C)

Pauline Danion (P)

Bernard Flourié (B)

Vered Abitbol (V)

Georgia Malamut (G)

Jean-Marie Reimund (JM)

Benedicte Caron (B)

Olivier DeWitt (O)

Lucine Vuitton (L)

Nicolas Mathieu (N)

Sandie Pestour (S)

Laurent Peyrin-Biroulet (L)

Camille Zallot (C)

Cyrielle Gilletta (C)

Matthieu Allez (M)

Jean-Marc Gornet (JM)

Clotilde Baudry (C)

Stephanie Viennot (S)

Arnaud Bourreille (A)

Caroline Trang-Poisson (C)

Nina Dib (N)

Hedi Brixi (H)

Guillaume Cadiot (G)

Medina Boualit (M)

Claire Painchart (C)

Laurianne Plastaras (L)

Romain Altwegg (R)

Lucile Boivineau (L)

Mathurin Fumery (M)

Ludovic Caillo (L)

David Laharie (D)

Pauline Riviere (P)

Florian Poullenot (F)

Benoit Coffin (B)

Henri Duboc (H)

Stephane Nahon (S)

Noemie Tavernier (N)

Marion Simon (M)

Baya Coulibaly (B)

Morgane Amil (M)

Duveau Nicolas (D)

Sherine Khater (S)

Mehdi Kaassis (M)

Felix Goutorbe (F)

Driffa Moussata (D)

Laurence Picon (L)