Expectations of IBS patients concerning disease and healthcare providers: Results of a prospective survey among members of a French patients’ association

Jean-Marc Sabaté (1) , Philippe Ducrotté (2, 3, 4, 5) , Thierry Piche (1) , Frank Zerbib (6) , M. Dapoigny (7) , S. Bruley Des Varannes (8, 9) , Bruno L. Bonaz (10) , François B.C. Mion (11) , Franck Iglicki (12) , D. Denez (1) , Suzelle Façon (1) , G. Gourcerol (13, 3, 4, 5) , Pauline Jouët (1)

1 Hôpital Ambroise Paré [AP-HP]
2 Service d'Hépato-Gastroentérologie [CHU Rouen]
3 ADEN - Nutrition, inflammation et dysfonctionnement de l'axe intestin-cerveau
4 IRIB - Institute for Research and Innovation in Biomedicine
5 UNIROUEN UFR Santé - UNIROUEN - UFR Santé
6 CHU Bordeaux
7 CHU Clermont-Ferrand
8 Institut des Maladies de l'Appareil Digestif
9 CHU Nantes - Centre Hospitalier Universitaire de Nantes
10 CHUGA - Centre Hospitalier Universitaire [CHU Grenoble]
11 HCL - Hospices Civils de Lyon
12 Hôpital Louis Mourier - AP-HP [Colombes]
13 Service de Physiologie Digestive, Urinaire, Respiratoire et de l'Exercice [CHU Rouen]

Background and aimsIBS patients have an impaired quality of life (QoL) and feel dissatisfaction with medical care. We aim to describe the expectations of members of the French Association of IBS patients (APSSII) concerning health care providers (HCPs) and a patients’ organization.Patients and methodsFrom January to June 2013, APSSII members were asked to answer questionnaires on their expectations and experiences concerning IBS and HCP.Results222/330 (67%) responded (women: 68.5%, 46.5 ± 17.7 years, disease duration: 8.8 ± 0.7 years, IBS-D 33.6%, IBS-C 26.7%, IBS-M 38.2%. IBS-SSS > 300 in 53% and HAD score > 19 in 45%). QoL impairment was correlated with disease severity and HAD score (r = −0.707 and r = −0.484, P < 0.001 respectively), but not with IBS subtype. Expectations for IBS were “improved health”, “better information on causes and treatments” (94%) and “better disease recognition” (86%). A significant gap was observed between expectations and experiences with HCPs. Better information, less isolation, recognition of the disease and a decrease in medical expenses were the main expectations for joining a patients’ organization.ConclusionsFrench IBS patients have a severe disease with a significant psychological impact and impaired QoL in half of the patients, certain unsatisfied expectations concerning HCP and high expectations in joining a patients’ organization.

Mots clés: Quality of life; Patients's organization; Irritable bowel syndrome; Patients expectations

Domaines: Hépatologie et Gastroentérologie

Jean-Marc Sabaté, Philippe Ducrotté, Thierry Piche, Frank Zerbib, M. Dapoigny, et al.. Expectations of IBS patients concerning disease and healthcare providers: Results of a prospective survey among members of a French patients’ association. Clinics and Research in Hepatology and Gastroenterology, 2020, ⟨10.1016/j.clinre.2020.02.014⟩. ⟨hal-02533639⟩