Understanding irritable bowel syndrome care: Co-create with patients and providers for diagnostic and management innovations

doi:10.3748/wjg.119690

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World Journal of Gastroenterology

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1007-9327

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Baishideng Publishing Group Inc, 7041 Koll Center Parkway, Suite 160, Pleasanton, CA 94566, USA

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Copyright: ©Author(s) 2026. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution-NonCommercial (CC BY-NC 4.0) license. No commercial re-use. See permissions. Published by Baishideng Publishing Group Inc.

World J Gastroenterol. Oct 14, 2026; 32(38): 119690
Published online Oct 14, 2026. doi: 10.3748/wjg.119690

Understanding irritable bowel syndrome care: Co-create with patients and providers for diagnostic and management innovations

Atena Mahboubian, Welmoed Jonker, Elise Hogewoning, Gertrude van den Brink, Jiska J Aardoom, Marise J Kasteleyn

Atena Mahboubian, Welmoed Jonker, Elise Hogewoning, Gertrude van den Brink, Jiska J Aardoom, Marise J Kasteleyn, Public Health and Primary Care, Leiden University Medical Center, Leiden 2333 ZD, Zuid-Holland, Netherlands

Author contributions: Mahboubian A, Jonker W, Hogewoning E, van den Brink G, Aardoom JJ, and Kasteleyn MJ contributed to data gathering and analysis; Mahboubian A, Jonker W, Hogewoning E, Aardoom JJ, and Kasteleyn MJ contributed to the methodology and data analysis and transcribing; Mahboubian A, Jonker W, and Hogewoning E contributed to the data gathering and analysis, transcribing; Mahboubian A Aardoom JJ, and Kasteleyn MJ contributed to the conceptualization; Mahboubian A contributed to editing the manuscript; Jonker W, Hogewoning E, van den Brink G, Aardoom JJ, and Kasteleyn MJ contributed to review the manuscript; Aardoom JJ and Kasteleyn MJ contributed to funding acquisition. All authors approval the final manuscript.

AI contribution statement: AI tools were solely used to check for grammar and improve readability of the manuscript.

Supported by Biotech Booster Program, No. BIOB24025.

Institutional review board statement: The study was reviewed and approved by the Medical Research Involving Human Subjects Act Institutional Review Board of Leiden University Medical Center (Approval No. WSC-2024-49/MdW).

Informed consent statement: All study participants provided informed written consent prior to the interviews.

Conflict-of-interest statement: All the authors report no relevant conflicts of interest for this article.

STROBE statement: The authors have read the STROBE Statement-checklist of items, and the manuscript was prepared and revised according to the STROBE Statement-checklist of items.

Data sharing statement: No additional data are available.

Corresponding author: Atena Mahboubian, Doctorate Student, Public Health and Primary Care, Leiden University Medical Center, Hippocratespad 21, Leiden 2333 ZD, Zuid-Holland, Netherlands. a.mahboubian@lumc.nl

Received: February 12, 2026
Revised: May 29, 2026
Accepted: July 1, 2026
Published online: October 14, 2026
Processing time: 206 Days and 3.2 Hours

Abstract

BACKGROUND

A non-invasive, biomarker-based, breath analysis device is currently being developed to support the diagnosis and management of irritable bowel syndrome (IBS). Understanding existing IBS diagnostic and management processes is essential to ensure its alignment with end users’ needs and existing IBS care.

AIM

To understand IBS diagnosis and management processes and explore how a breath analysis device might integrate with care processes.

METHODS

This qualitative, explorative study comprised two research activities: (1) Desk research; and (2) Semi-structured interviews with stakeholders. Desk research sources included (grey) literature such as Dutch College of General Practitioners guidelines and the patient association website. Nineteen semi-structured interviews were performed: 11 with patients and eight with health care professionals.

RESULTS

Despite the complexity of diagnosing and managing IBS, our results provide comprehensive insight into current IBS care processes. Although health care professionals felt that they provided sufficient information and fully discussed treatment options, patients nevertheless experienced a lack of guidance, often turning to complementary medicine. Additionally, while many participants were receptive towards the idea of a breath analysis tool to support the diagnosis and management of IBS, skepticism was expressed regarding its likely diagnostic accuracy, and the risk of misdiagnosis and underdiagnosis of other gastrointestinal diseases was also mentioned.

CONCLUSION

Stakeholders expressed a need for more definitive diagnostic testing for IBS. Co-creating digital health tools based on lived experiences may improve patient outcomes and strengthen patient–provider relationships.

Keywords: Contextual inquiry; Participatory research; Co-creation; Center for eHealth Research and Disease Management roadmap; Interviews; Irritable bowel syndrome

Core Tip: This study aimed to understand current irritable bowel syndrome diagnosis and management, and through interviews with patients and healthcare professionals, explore how innovations might successfully integrate with irritable bowel syndrome care. Patients and healthcare professionals supported the development of a more definitive diagnostic tool, while remaining cautious about its accuracy and the potential for mis- and underdiagnosis. Ongoing involvement of patients and healthcare professionals is essential for successful development and implementation, ensuring usability, trust in the device’s added value, and integration into clinical workflows and patients’ lives.