Abstract Background Inflammatory bowel diseases (IBD) can significantly affect patients’ mental well-being and overall quality of life1. Consequently, monitoring both functional and psychological aspects is essential to better understand the impact of IBD on patients2. This study aimed to assess psychological burden of IBD in a global cohort and to explore potential differences across age groups, regions and sex. Methods A list of 72 items, categorized into 5 domains was developed based on existing quality of life questionnaires assessing the burden of IBD. Patients (≥18 y/o) from Europe, North America and Oceania were recruited through social platforms and patient organizations. They were requested to rate each item on a 9-point rating scale (1 – 3 = yearly or almost yearly, 7 – 9 = weekly to daily) in response to the question: Due to your IBD, how frequently have you experienced this item over the course of your life with IBD?. This study focuses specifically on the scoring of the 16 items within the domain psychological burden (Fig 1) in relation to patients’ age, region and gender. Results Between August 18th and October 22nd 2025, 408 out of the 508 responding patients completed the survey (Table 1). Patient reported bias analysis showed that patients without prior participation in a survey study were less likely to complete the survey (p = 0.018), whereas those who had undergone surgery were more likely (p = 0.029). Feelings of tearfulness, sadness or being upset were reported more frequently by participants from Europe vs North America (Fig 1A). These feelings, as well as fatigue, were more common among women and individuals aged 18–34 years (Fig 1B,C). A negative body image and difficulties in accepting the disease were associated with younger age (18-49 years) and female sex (Fig 1B,C). Patients aged 18-49 years more frequently reported social isolation and fear of cancer, while those aged 18-34 years more often experienced unhappiness, dissatisfaction with personal life, and fear of needing surgery (Fig 1B). Patients aged 35-49 years showed a higher occurrence of fear of stigmatization and the need to justify their disease in a social context (Fig 1B). Compared to men, women reported higher levels of embarrassment, stress, tension, guilt, reduced general well-being, and difficulties with household responsibilities (Fig 1C). Conclusion Psychological burden trends were mostly the same across Europe, North America and Oceania. However, results showed that women and younger patients reported a higher frequency of psychological burden. Findings highlight the need for a holistic approach that addresses both clinical symptoms and mental health to improve the overall quality of life for patients with IBD. References: 1. Lönnfors S, Vermeire S, Greco M, Hommes D, Bell C, Avedano L. IBD and health-related quality of life -- discovering the true impact. J Crohns Colitis. 2014;8(10):1281-1286. doi:10.1016/J.CROHNS.2014.03.005 2. Williet N, Sandborn WJ, Peyrin-Biroulet L. Patient-reported outcomes as primary end points in clinical trials of inflammatory bowel disease. Clinical Gastroenterology and Hepatology. 2014;12(8). doi:10.1016/j.cgh.2014.02.016 Conflict of interest: Vanhaverbeke, Manon: No COI Fierens, Liselotte: no COI Walentynowicz, Marta: No conflicts Horrigan, Jamie: none Keersmaekers, Bep: My research as well as part of my salary is funded by a grant from The Leona M. and Harry B. Helmsley Charitable Trust Salwen-Deremer, Jessica: Grant funding from NIDDK Research support from Buhlmann Diagnostics Consultant fees from Eli Lilly & Co (relationship expires March 2026) Honoraria from Rome Foundation Associate editor for Inflammatory Bowel Disease Journal Van Diest, Ilse: No conflict of interest Siegel, Corey: Consultant/Advisory Board: Abbvie, Boomerang, Celltrion, Johnson and Johnson, Lilly, Napo Pharmaceuticals, Path Healthcare, Pfizer, Prometheus Labs, Sanofi, Takeda, Trellus Health Speaker for CME activities: Abbvie, Johnson & Johnson, Pfizer, Takeda Grant support: Abbvie, Celltrion, Johnson & Johnson, Lilly, Pfizer Intellectual property: MiTest Health, LLC (software company) has a patent for a “System and Method of Communicating Predicted Medical Outcomes.” Equity Interest: Dr. Corey Siegel and Dr. Lori Siegel are co-founders of MiTest Health, LLC (software company). Technology developed by MiTest Health, LLC has been licensed to Takeda. Dr. Corey Siegel has an equity interest in Path Healthcare. Dr. Corey Siegel has an equity interest in Trellus Health Hart, Ailsa: Grant: Takeda Personal Fees: Abbvie, Amgen, Arena, AZ, Falk, Celltrion, Eli Lilly, Ferring, Genentech/ Roche, GSK, Pfizer, Takeda, Napp, Pharmacosmos, Janssen (J & J), Bristol-Myers Squibb, Gilead, Galapagos, Alfasigma Ferrante, Marc: Research grants from AbbVie, EG Pharma, Celltrion, Janssen, Pfizer, Takeda and Viatris Consultancy fees from AbbVie, AgomAb Therapeutics, Boehringer Ingelheim, Celgene, Celltrion, Eli Lilly, Janssen-Cilag, MRM Health, Merck Sharp and Dohme, Pfizer, Takeda and ThermoFisher Speakers’ fees from AbbVie, Biogen, Boehringer Ingelheim, Dr Falk Pharma, Ferring, Janssen-Cilag, Merck Sharp and Dohme, Pfizer, Takeda, Truvion Healthcare and Viatris
Vanhaverbeke et al. (Thu,) studied this question.
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