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...
Main Authors: | , , , , , |
---|---|
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 |