Patient Preferences

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There is very little scientific evidence on patient preference targeted at the IBD patient community. This is why EFCCA decided to embark on this project which started in 2020 with an in-depth literature review and a cooperation agreement with KU Leuven university (Belgium). KU Leuven had already run a country level survey on IBD patient preferences which,  together with other similar studies on other disease areas, has become the starting point of our multi-annual project.


Patient preference studies can inform us about:

  • What matters to the patients

  • How much does it matter?

  • What matters most?

    • What trade-offs are patients prepared to make?

    • What are the risks that patients are prepared to take?

  • Information about preference heterogeneity  

    • Treatment and disease experience

    • Time since diagnosis 

Main objectives: 

  1. To reveal the unmet needs IBD patients have with respect to treatments for IBD

  2. To quantify the importance (“weight”) of relevant IBD treatment attributes

  3. Evaluate the Monoclonal Antibody Resistance that IBD patients express for different treatment alternatives

  4. To determine preference heterogeneity, i.e., to investigate how preferences are influenced by participants’ characteristics 


Download Presentations:

Project Presentation.pdf



  • European study (but  countries outside Europe can participate)

  • IBD patients – minimum 18 years old

  • as inclusive as possible

  • Recruitment: physicians and patient organisations across Europe

PROJECT TEAM: KU LEUVEN researchers AND EFCCA representatives


What we are doing at the moment?

KU Leuven researchers and EFCCA representatives brainstormed and worked on shared understanding and definition of attributes and structure of the study. Then the pilot phase started (September 2022). It consists in interviewing English native speaker patients to get a honest and direct feedback on attributes and survey. The pilot phase will be open until end of 2022.

Publication of Qualitative Study (This has been published in the Journal of Chron's and Colitis)

Read Study 

Elise Schoefs, PhD Researcher–KU Leuven also presented our joint survey on IBD patient preferences at the ISPOR Europe conference this year.


In 2023 we will be targeting the countries to be involved and arrange for the translations of the survey into 10/12 languages (tbc). We will run a social media campaign for awareness raising and recruitment with EEFCCA members and clinicians involved. Our ultimate goal is to achieve a general picture on the patient preferences at European level and analysing  country data for comparison.

More information: 

KU LEUVEN country level study (Belgium) on IBD patient preferences:  Terugkoppeling_patiënten_301121_engels.pdf

Project date: 
October, 2020