ABSTRACT Background Crohn’s disease and ulcerative colitis are chronic and increasingly prevalent conditions that significantly impact patients’ physical, psychological, and social well‐being. Although primarily affecting the gastrointestinal tract, IBD presents complex challenges that extend beyond physical symptoms, influencing multiple domains of patients' lives, including mental and sexual health, nutrition, pediatric development, social functioning, family, and career planning, constituting an important financial burden. Methods The scoping review was conducted in accordance with PRISMA‐ScR guidelines. Searches were performed in PubMed and Embase from inception to 1 June 2025 using predefined search terms related to the study topic. Titles and abstracts were screened for eligibility, followed by a full‐text review based on predetermined inclusion and exclusion criteria. Three independent reviewers conducted the screening and eligibility assessment, with disagreements resolved through discussion and consensus. In addition to the published literature, the review incorporated direct input from members of an IBD patient association, who provided perspectives on different aspect of the patient journey, including impact and burden of each domain, as well as suggested interventions and support strategies. Aims This scoping review seeks to provide a comprehensive overview of the multifaceted impact of IBD on individuals’ lives. It aims to highlight the IBD patient journey and the broad‐ranging consequences of IBD and to offer insights into how healthcare providers and systems can better support patients throughout their individual journey. Results This review included 164 studies from 37 countries. Most studies were published between 2009 and 2025. Across the literature, living with IBD was consistently described as a complex and multifaceted experience affecting multiple domains of life. The most commonly reported impacts included disruptions in daily functioning, mental health challenges, impaired sexual health, and strain on interpersonal relationships. Psychosocial burden emerged as a dominant theme, although it was often under‐recognized in clinical care. Additionally, gaps were identified in addressing long‐term support needs and integrating multidisciplinary care approaches. Conclusion Effective IBD management requires recognition of its broad impact on different aspects of the individual's life. Addressing the medical, psychological, social, and economic dimensions of the disease is essential to improving patients' quality of life. A comprehensive patient‐centered care model with shared‐decision making is vital for achieving optimal outcomes in IBD management.
Sharara et al. (Fri,) studied this question.