OBJECTIVES: There is an underreporting of the appropriate methodology to develop attributes and levels for inclusion in patient preference studies (PPS). Therefore, this study aimed to: i) develop attributes and levels for a preference survey using Discrete Choice Experiment in inflammatory bowel disease (IBD), and ii) generate experience-based learnings for attribute and level identification in PPS.

METHODS: A four-step approach was executed: i) scoping literature review, ii) focus group discussions (FGDs) with IBD patients (n=11) using Nominal Group Technique, iii) qualitative thematic analysis, and iv) multi-stakeholder discussions with patients, patient representatives, clinicians, and preference research experts.

RESULTS: The literature review resulted in the identification of 55 characteristics related to IBD symptoms, side-effects, and efficacy outcomes. During the thematic analysis of the FGDs, this list was converted into a set of patients’ prioritized attributes. The multi-stakeholder discussions reached consensus to include 16 attributes in the subsequent quantitative PPS, each accompanied with patient and clinically relevant levels and described in a patient-friendly manner. These attributes entail: i) surgery, ii) frequency, urgency, and pain of having to go to the toilet, iii) abdominal pain and cramps, iv) fatigue, v) sleeping problems, vi) psychological impact, vii) serious infection, viii) changes in physical appearance, ix) headache, x) skin problems, xi) libido, xii) life-threatening side-effects, xiii) mode of administration, xiv) endoscopic remission, xv) how fast the treatment works, and xvi) vision problems. Key learnings include the need to involve patients and clinicians to ensure the validity and adequate capture of patient-relevant and clinically plausible attributes and levels.

CONCLUSIONS: This study highlights the practical implementation and usefulness of qualitative research with patients to develop attributes and levels. Determining patient preferences for the included attributes may serve pharmaceutical industry, regulators, and payers in understanding patient relevant treatment outcomes and can enable value-based and patient-centric decision-making aligned with the true IBD patients’ needs.