Patient-reported healthcare expectations in inflammatory bowel diseases.

BACKGROUND:Patient-reported experience is an important component of a holistic approach to quality of care. Patients' expectations of treatments and global disease management may indicate their illness representations and their satisfaction and hopes regarding quality of care. OBJECTIVE:To stud...

Full description

Bibliographic Details
Main Authors: Valérie Pittet, Carla Vaucher, Florian Froehlich, Michel H Maillard, Pierre Michetti, Swiss IBD Cohort Study Group
Format: Article
Language:English
Published: Public Library of Science (PLoS) 2018-01-01
Series:PLoS ONE
Online Access:http://europepmc.org/articles/PMC5957384?pdf=render
_version_ 1819238330510868480
author Valérie Pittet
Carla Vaucher
Florian Froehlich
Michel H Maillard
Pierre Michetti
Swiss IBD Cohort Study Group
author_facet Valérie Pittet
Carla Vaucher
Florian Froehlich
Michel H Maillard
Pierre Michetti
Swiss IBD Cohort Study Group
author_sort Valérie Pittet
collection DOAJ
description BACKGROUND:Patient-reported experience is an important component of a holistic approach to quality of care. Patients' expectations of treatments and global disease management may indicate their illness representations and their satisfaction and hopes regarding quality of care. OBJECTIVE:To study expectations of patients with inflammatory bowel disease. METHODS:Two focus groups were conducted with 14 patients to explore their expectations about treatments and disease management. From qualitative content analyses of focus group discussions, we built a 22-item expectations questionnaire that was sent to 1756 patients of the Swiss IBD cohort. Answers were collected on a visual analog scale from 0 to 100, and medians (interquartile range [IQR]) calculated. Factor analysis identified main expectation dimensions, and multivariate analyses were performed to describe associations with patient characteristics. RESULTS:Of 1094 patients (62%) included in the study, 54% were female, 54% had Crohn's disease, 35% had tertiary education, and 72% were employed. Expectation dimensions comprised realistic, predictive, and ideal expectations and were linked to information, communication, daily care, and disease recognition. Half (11 of 22) of the expectations were ranked as very high (median score > 70), the 2 most important being good coordination between general practitioners and specialists (median score: 89, IQR: 71-96) and information on treatment adverse events (89, IQR: 71-96). Women had overall higher levels of expectations than did men. Expectations were not associated with psychosocial measures, except those related to disease recognition, and most of them were highly associated with increased concerns on disease constraints and uncertainty. CONCLUSIONS:Patients have high expectations for information and communication among caregivers, the levels varying by gender and region. Patients also appear to request more active participation in their disease management.
first_indexed 2024-12-23T13:34:31Z
format Article
id doaj.art-00ed99d50b974d65ab9727b556d4bd2a
institution Directory Open Access Journal
issn 1932-6203
language English
last_indexed 2024-12-23T13:34:31Z
publishDate 2018-01-01
publisher Public Library of Science (PLoS)
record_format Article
series PLoS ONE
spelling doaj.art-00ed99d50b974d65ab9727b556d4bd2a2022-12-21T17:45:03ZengPublic Library of Science (PLoS)PLoS ONE1932-62032018-01-01135e019735110.1371/journal.pone.0197351Patient-reported healthcare expectations in inflammatory bowel diseases.Valérie PittetCarla VaucherFlorian FroehlichMichel H MaillardPierre MichettiSwiss IBD Cohort Study GroupBACKGROUND:Patient-reported experience is an important component of a holistic approach to quality of care. Patients' expectations of treatments and global disease management may indicate their illness representations and their satisfaction and hopes regarding quality of care. OBJECTIVE:To study expectations of patients with inflammatory bowel disease. METHODS:Two focus groups were conducted with 14 patients to explore their expectations about treatments and disease management. From qualitative content analyses of focus group discussions, we built a 22-item expectations questionnaire that was sent to 1756 patients of the Swiss IBD cohort. Answers were collected on a visual analog scale from 0 to 100, and medians (interquartile range [IQR]) calculated. Factor analysis identified main expectation dimensions, and multivariate analyses were performed to describe associations with patient characteristics. RESULTS:Of 1094 patients (62%) included in the study, 54% were female, 54% had Crohn's disease, 35% had tertiary education, and 72% were employed. Expectation dimensions comprised realistic, predictive, and ideal expectations and were linked to information, communication, daily care, and disease recognition. Half (11 of 22) of the expectations were ranked as very high (median score > 70), the 2 most important being good coordination between general practitioners and specialists (median score: 89, IQR: 71-96) and information on treatment adverse events (89, IQR: 71-96). Women had overall higher levels of expectations than did men. Expectations were not associated with psychosocial measures, except those related to disease recognition, and most of them were highly associated with increased concerns on disease constraints and uncertainty. CONCLUSIONS:Patients have high expectations for information and communication among caregivers, the levels varying by gender and region. Patients also appear to request more active participation in their disease management.http://europepmc.org/articles/PMC5957384?pdf=render
spellingShingle Valérie Pittet
Carla Vaucher
Florian Froehlich
Michel H Maillard
Pierre Michetti
Swiss IBD Cohort Study Group
Patient-reported healthcare expectations in inflammatory bowel diseases.
PLoS ONE
title Patient-reported healthcare expectations in inflammatory bowel diseases.
title_full Patient-reported healthcare expectations in inflammatory bowel diseases.
title_fullStr Patient-reported healthcare expectations in inflammatory bowel diseases.
title_full_unstemmed Patient-reported healthcare expectations in inflammatory bowel diseases.
title_short Patient-reported healthcare expectations in inflammatory bowel diseases.
title_sort patient reported healthcare expectations in inflammatory bowel diseases
url http://europepmc.org/articles/PMC5957384?pdf=render
work_keys_str_mv AT valeriepittet patientreportedhealthcareexpectationsininflammatoryboweldiseases
AT carlavaucher patientreportedhealthcareexpectationsininflammatoryboweldiseases
AT florianfroehlich patientreportedhealthcareexpectationsininflammatoryboweldiseases
AT michelhmaillard patientreportedhealthcareexpectationsininflammatoryboweldiseases
AT pierremichetti patientreportedhealthcareexpectationsininflammatoryboweldiseases
AT swissibdcohortstudygroup patientreportedhealthcareexpectationsininflammatoryboweldiseases