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11-04-2020 | Uitgave 9/2020

Quality of Life Research 9/2020

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

Quality of Life Research > Uitgave 9/2020
Welmoed K. van Deen, Ben Kiaei, S. Alandra Weaver, Damara J. Crate, Michelle H. Kwon, Samir A. Shah, Gil Y. Melmed, Corey A. Siegel
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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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