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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2020

Open Access 01-12-2020 | Ulcerative Colitis | Research

Assessment of patient-centered outcomes (PROs) in inflammatory bowel disease (IBD): a multicenter survey preceding a cross-disciplinary (functional) consensus

Authors: Xiaohan Yan, Yuqi Qiao, Jinglu Tong, Ren Mao, Jie Liang, Cuicui Lv, Yueying Chen, Yiyan Wang, Jun Shen, the Young Investigators for the study of Inflammatory Bowel Diseases (YIIBD)

Published in: Health and Quality of Life Outcomes | Issue 1/2020

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Abstract

Background

With a shift in the healthcare paradigm towards a more patient-centered approach, data on inflammatory bowel disease (IBD) needs to be further explored. This study aimed to determine patient perspectives on the effect of IBD and features of patients with lower satisfaction level and compare patient and physician perception of IBD-related Quality of Care (QoC).

Methods

A previously developed pre-standardised set of questions regarding patient-centered outcome (PRO) measures for IBD, comprising 36 items, was administered in five centers, and a concomitant questionnaire for specialised physicians was adapted and administered.

Results

Overall, 1005 patients with IBD met the inclusion criteria. Sixty-five questionnaires were administered to specialised physicians. Both patients and physicians perceived the IBD-related QoC as being satisfactory. Furthermore, this study revealed areas of shortcomings where it comes to patient perceptions. Female sex and the presence of negatively impacting disease characteristics (presence of significant pain or discomfort, lack of energy, feeling fatigued most of the time, experiencing anxiety or depression in the last 2 weeks) were associated with lower satisfaction levels.

Conclusions

Our findings can be used in establishing strategies aimed at improving patient QoC and defining strategic priorities. These data can aid in improving the communication of the pressing needs of IBD patients, to both the public payers and health authorities.
Appendix
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Metadata
Title
Assessment of patient-centered outcomes (PROs) in inflammatory bowel disease (IBD): a multicenter survey preceding a cross-disciplinary (functional) consensus
Authors
Xiaohan Yan
Yuqi Qiao
Jinglu Tong
Ren Mao
Jie Liang
Cuicui Lv
Yueying Chen
Yiyan Wang
Jun Shen
the Young Investigators for the study of Inflammatory Bowel Diseases (YIIBD)
Publication date
01-12-2020
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2020
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-020-01489-8

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