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The Burden of Inflammatory Bowel Disease: A Patient-reported Qualitative Analysis and Development of a Conceptual Model

Devlen, Jennifer PhD*; Beusterien, Kathleen MPH; Yen, Linnette MS, MA; Ahmed, Awais MBB§; Cheifetz, Adam S. MD§; Moss, Alan C. MD§

doi: 10.1097/01.MIB.0000440983.86659.81
Original Clinical Articles

Background: The aim of this study was to describe the impacts of inflammatory bowel disease (IBD) from the patients' perspective and to inform the development of a conceptual model.

Methods: Focus groups and one-on-one interviews were undertaken in adult patients with IBD. Transcripts from the focus groups and interviews were analyzed to identify themes and links between themes, assisted by qualitative data software MaxQDA. Themes from the qualitative research were supplemented with those reported in the literature and concepts included in IBD-specific patient-reported outcome measures.

Results: Twenty-seven patients participated. Key physical symptoms included pain, bowel-related symptoms such as frequency, urgency, incontinence, diarrhea, passing blood, and systemic symptoms such as weight loss and fatigue. Participants described continuing and variable symptom experiences. IBD symptoms caused immediate disruption of activities but also had ongoing impacts on daily activities, including dietary restrictions, lifestyle changes, and maintaining close proximity to a toilet. More distal impacts included interference with work, school, parenting, social and leisure activities, relationships, and psychological well-being. The inconvenience of rectal medications, refrigerated biologics, and medication refills emerged as novel burdens not identified in existing patient-reported outcome measures.

Conclusions: IBD symptoms cause immediate disruption in activities, but patients may continue to experience some symptoms on a chronic basis. The conceptual model presented here may be useful for identifying target concepts for measurement in future studies in IBD.

Article first published online 8 January 2014Supplemental Digital Content is Available in the Text.

*Oxford Outcomes, ICON Plc Company, Bethesda, Maryland;

Outcomes Research Strategies in Health LLC, Washington, District of Columbia;

Shire Development LLC, Wayne, Pennsylvania; and

§Center for Inflammatory Bowel Disease, Beth Israel Deaconess Medical Center, Boston, Massachusetts.

Reprints: Alan C. Moss, MD, Center for Inflammatory Bowel Disease, Beth Israel Deaconess Medical Center, 330 Brookline Avenue, Boston, MA 02215 (e-mail:

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Web site (

A. C. Moss is supported by NIH grant K23DK084338 and the generosity of Doris Toby Axelrod & Lawrence J. Marks. The study design, implementation, and analysis were independent of the funding sources.

A. C. Moss has served on Advisory Boards for Janssen, Abbott, and UCB, and received research funding from Shire, Salix and Proctor & Gamble. A. S. Cheifetz has served on Advisory Boards for Janssen, Abbott, and UCB. Unrestricted funding for the patient interviews and focus groups and for the literature research was provided by Shire Development LLC, Wayne, PA. We thank Emuella Flood for assistance with the focus groups and patient interviews.

The authors have no other conflicts of interest to disclose.

L. Yen passed away on 25th December 2012 and will be dearly missed by the research teams that she contributed to or led.

Received September 09, 2013

Accepted November 26, 2013

© Crohn's & Colitis Foundation of America, Inc.
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