Patient-reported outcomes in inflammatory bowel disease: a measurement of effect in research and clinical care

Jane Fletcher; Sheldon C. Cooper; Amelia Swift

doi:10.3390/gastroent12020020

Patient-reported outcomes in inflammatory bowel disease: a measurement of effect in research and clinical care

Jane Fletcher^*, Sheldon C. Cooper, Amelia Swift

^*Corresponding author for this work

Research output: Contribution to journal › Review article › peer-review

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Abstract

The measurement of outcomes is key in evaluating healthcare or research interventions in inflammatory bowel disease (IBD). In patient-centred care, patient-reported outcome measures (PROMs) are central to this evaluation. In this review, we provide an overview of validated, adult disease-specific PROMs developed for use in IBD. Our aim is to assist clinicians and researchers in selection of PROMs to measure outcomes in their patient cohort. The Consensus-based Standards for the Selection of Health Measurement Instruments database of systematic reviews was the primary resource used to identify PROMs used in IBD. Search terms were ‘Crohn’s disease’, ‘ulcerative colitis’, and ‘IBD’. Seven systematic reviews were identified from this search. In addition, the publication by the IBD Core Outcome Set Working Group was used to identify further PROMs. Three systematic reviews were excluded as they did not meet the inclusion criteria. From the five included systematic reviews, we identified 21 PROMs and their shortened versions. In conclusion, it does not appear that any one PROM is entirely suitable for both research and clinical practice. Overall, the IBDQ-32 is most widely used in research but has the limitation of cost, whereas the IBD-Control has been recommended in the clinical core outcome set.

Original language	English
Pages (from-to)	225-237
Number of pages	13
Journal	Gastroenterology Insights
Volume	12
Issue number	2
DOIs	https://doi.org/10.3390/gastroent12020020
Publication status	Published - 12 May 2021

Bibliographical note

Funding Information:
Conflicts of Interest: J.F. is in receipt of funding from the National Institute for Health Research (NIHR) and honoraria from Avanos; S.C.C. reports educational sponsorship from Takeda and Fresenius-Kabi and honoraria from Novartis and Baxter. A.S. reports no conflict of interest.

This publication presents independent research funded by the National Institute for Health Research (NIHR) and Health Education England through a Clinical Doctoral Research Fellowship, ICA-CDRF-2017-03-083. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.

Publisher Copyright:
Copyright: © 2021 by the authors.

Keywords

Core outcome sets
Disability
HRQOL
IBD-Control
IBDQ
PROM
Quality of life
Questionnaire
Research

ASJC Scopus subject areas

Hepatology
Gastroenterology

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FletcherJ2021PatientFinal published version, 546 KBLicence: Creative Commons: Attribution (CC BY)

Cite this

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title = "Patient-reported outcomes in inflammatory bowel disease: a measurement of effect in research and clinical care",

abstract = "The measurement of outcomes is key in evaluating healthcare or research interventions in inflammatory bowel disease (IBD). In patient-centred care, patient-reported outcome measures (PROMs) are central to this evaluation. In this review, we provide an overview of validated, adult disease-specific PROMs developed for use in IBD. Our aim is to assist clinicians and researchers in selection of PROMs to measure outcomes in their patient cohort. The Consensus-based Standards for the Selection of Health Measurement Instruments database of systematic reviews was the primary resource used to identify PROMs used in IBD. Search terms were {\textquoteleft}Crohn{\textquoteright}s disease{\textquoteright}, {\textquoteleft}ulcerative colitis{\textquoteright}, and {\textquoteleft}IBD{\textquoteright}. Seven systematic reviews were identified from this search. In addition, the publication by the IBD Core Outcome Set Working Group was used to identify further PROMs. Three systematic reviews were excluded as they did not meet the inclusion criteria. From the five included systematic reviews, we identified 21 PROMs and their shortened versions. In conclusion, it does not appear that any one PROM is entirely suitable for both research and clinical practice. Overall, the IBDQ-32 is most widely used in research but has the limitation of cost, whereas the IBD-Control has been recommended in the clinical core outcome set.",

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author = "Jane Fletcher and Cooper, {Sheldon C.} and Amelia Swift",

note = "Funding Information: Conflicts of Interest: J.F. is in receipt of funding from the National Institute for Health Research (NIHR) and honoraria from Avanos; S.C.C. reports educational sponsorship from Takeda and Fresenius-Kabi and honoraria from Novartis and Baxter. A.S. reports no conflict of interest. This publication presents independent research funded by the National Institute for Health Research (NIHR) and Health Education England through a Clinical Doctoral Research Fellowship, ICA-CDRF-2017-03-083. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care. Publisher Copyright: Copyright: {\textcopyright} 2021 by the authors.",

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Patient-reported outcomes in inflammatory bowel disease: a measurement of effect in research and clinical care

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

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