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A qualitative inquiry into patients’ perspectives on individualized priorities for treatment outcomes in inflammatory bowel diseases



Patients with inflammatory bowel diseases (IBD) experience a variety of symptoms and limitations due to their condition. While many outcome measures are available to assess IBD symptom level and disease activity, individual patients’ preferences are usually not accounted for. Individualized outcome measures allow individual patients to select and weigh outcomes based on their relative importance, and have been developed in other medical disciplines. In this study, we explored IBD patients’ perspectives on different strategies to prioritize IBD-specific health outcomes.


Existing individualized measures were modified for relevance to IBD patients. We performed six focus groups, in which patients were asked to rate and weigh these measures in a series of exercises and to discuss the pros and cons of five different prioritization methods (Likert scale, ranking, selecting outcomes, distribute points, and using a rotating disk) using a semi-structured approach. A thematic analysis revealed key themes in the data.


Patients’ thoughts could be grouped into four key themes with 2–4 subthemes each: (1) prioritizing outcomes; (2) differences between methods; (3) outcomes to include; and (4) practical use. Overall, it was challenging for many patients to prioritize outcomes. Among the different prioritization methods, the rotating disk was perceived as the most intuitive. Patients anticipated that this visualization would also help them communicate with their physician.


In a series of focus groups, a visual rotating disk was found to be an intuitive and holistic way to elicit the relative importance of different outcomes for individual IBD patients.

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This work was supported by funds from the Crohn’s and Colitis Foundation (New York, NY). Data collection for this project was facilitated by IBD Qorus. Plastic disks were obtained from L’Atelier de l’Évaluation (Saint-Sauvant, France). We would like to thank our focus group participants for their contribution and Dr. Carine Khalil for her advice on the qualitative content analysis.


This work was supported by funds from the Crohn’s and Colitis Foundation (New York, NY).

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Authors and Affiliations



Conception and design: WKvD, SAW, GYM, CAS; Data collection, WKvD, BK, DJC, MHK, SAS; Data analysis: WKvD, BK; Manuscript preparation WKvD, SAS, GYM, CAS. All authors commented on previous versions of the manuscript and read and approved the final manuscript.

Corresponding author

Correspondence to Welmoed K. van Deen.

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Conflict of interest

WKvD: Grant Funding from Crohn's and Colitis Foundation; SAW: Employee of the Crohn’s and Colitis Foundation; GYM: Consultant: Abbvie, Boehringer-Ingelheim, Celgene, Janssen, Pfizer, Samsung Bioepis, Takeda; CAS: Consultant/Advisory Board: Abbvie, Amgen, BMS, Celgene, Lilly, Janssen, Sandoz, Pfizer, Prometheus, Sebela, Takeda; Speaker for CME activities: Abbvie, Celgene, Janssen, Pfizer, Takeda; Grant support: Crohn’s and Colitis Foundation, AHRQ (1R01HS021747-01), Broad Medical Research Program, Abbvie, Janssen, Pfizer, Takeda; Intellectual property: MiTest Health, LLC has a patent pending for a “System and Method of Communicating Predicted Medical Outcomes”, filed 3/24/10. Dr. Corey Siegel and Dr. Lori Siegel are inventors; Equity Interest: Dr. Corey Siegel and Dr. Lori Siegel are co-founders of MiTest Health, LLC. BK, DJC, MHK and SAS do not have any financial disclosures or conflict of interest to report.

Ethical approval

Institutional Review Board (IRB) approval was obtained for all participating sites: Gastroenterology Associates relied on the University of Southern California IRB under protocol number HS-18-00424. The Cedars-Sinai Medical Center IRB approved this under protocol number Pro00054443 and the Dartmouth-Hitchcock Medical Center approved it under protocol number STUDY00031555. All procedures performed in studies involving human participants were in accordance with the ethical standards of these IRBs and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. All participants were provided with an information sheet and verbally consented to participate in this study.

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van Deen, W.K., Kiaei, B., Weaver, S.A. et al. A qualitative inquiry into patients’ perspectives on individualized priorities for treatment outcomes in inflammatory bowel diseases. Qual Life Res 29, 2403–2414 (2020).

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  • Inflammatory bowel diseases
  • Individualized outcome measures
  • Patient preferences
  • Health outcomes