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

•IBS Patients have an impaired quality of life and a difficult relationship with healthcare providers (HCP).•A significant gap was observed between expectations and experiences with HCPs.•HCPs should give more empathy and attention to patients’ demands, in order to improve patient care. IBS patients...

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Published in:	Clinics and research in hepatology and gastroenterology Vol. 44; no. 6; pp. 961 - 967
Main Authors:	Sabaté, J.M., Ducrotté, P., Piche, T., Zerbib, F., Dapoigny, M., Bruley des Varannes, S., Bonaz, B., Mion, F., Iglicki, F., Denhez, D., Façon, S., Gourcerol, G., Jouët, P.
Format:	Journal Article
Language:	English
Published:	France Elsevier Masson SAS 01-11-2020 Elsevier
Subjects:	Human health and pathology Hépatology and Gastroenterology Irritable bowel syndrome Life Sciences Patients expectations Patients' organization Quality of life Patients' organization Irritable bowel syndrome Quality of life Patients expectations Patients's organization
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Summary:	•IBS Patients have an impaired quality of life and a difficult relationship with healthcare providers (HCP).•A significant gap was observed between expectations and experiences with HCPs.•HCPs should give more empathy and attention to patients’ demands, in order to improve patient care. IBS 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. From January to June 2013, APSSII members were asked to answer questionnaires on their expectations and experiences concerning IBS and HCP. 222/330 (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. French 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.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	2210-7401 2210-741X
DOI:	10.1016/j.clinre.2020.02.014