Global Patient Preference Study Published: What Matters Most to People Living with IBD ⭐

After several years of collaboration, a global patient preference study conducted in partnership with the International Federation of Crohn's & Ulcerative Colitis Associations (IFCCA) and KU Leuven (Belgium) has been published, providing new insights into what people living with Inflammatory Bowel Disease (IBD) value most when choosing treatments.

The project began in 2020 with a comprehensive literature review and the development of a research programme to better understand patients' treatment preferences. Following qualitative research, survey development, pilot testing and translation into 15 languages, the survey was launched internationally with the support of IFCCA's member associations, healthcare professionals and patient communities.

A total of 1,452 people from 40 countries participated in the study, making it one of the largest global patient preference studies in IBD. Participants compared different hypothetical treatment options to identify which treatment and disease-related characteristics matter most to them.

The findings revealed that psychological well-being, relief from abdominal pain and cramps, and reducing bowel urgency are the factors that have the greatest influence on treatment decisions. In contrast, characteristics such as how a treatment is administered or how quickly it works were found to be less important than improvements in symptoms and quality of life.

The study also showed that treatment preferences vary between individuals depending on factors such as age, gender, geographical region and treatment experience. These findings reinforce the importance of personalised care and shared decision-making, ensuring that treatment choices reflect what matters most to each person living with IBD.

This publication marks an important milestone for IFCCA's long-standing commitment to ensuring that the patient voice is embedded throughout the development, evaluation and delivery of new IBD treatments. The findings provide valuable evidence to support more patient-centred clinical research, regulatory decision-making and healthcare policy.