Editorial: The Hidden Burden—Stigmatisation in Inflammatory Bowel Disease: Authors' Reply

We sincerely thank Lenti et al. for their thoughtful and encouraging editorial [1], discussing our systematic review on the burden, determinants, and consequences of stigma in inflammatory bowel disease (IBD) [2]. Their commentary further reinforces the importance of recognising stigma as a relevant psychosocial determinant of health in IBD. We agree that the burden of stigmatisation in IBD, along with a patient's capacity to cope (i.e., resilience), remains insufficiently addressed in clinical practice. Although our review shows that stigma affects 85% of adults and up to 87% of children and adolescents living with IBD, trials continue to focus largely on endoscopic, radiological, and biochemical outcomes [3]. Better integrating resilience-building strategies, along with routine screening for stigma-related distress, could reduce social anxiety, treatment avoidance, and maladaptive coping. With patient-reported outcomes gaining prominence as key endpoints, it is essential to embed these into clinical practice and trials [3]. The editorial raises an important issue regarding the stigma that contributes to delayed diagnosis. We concur that diagnostic delays in IBD are driven primarily by nonspecific early symptoms, health-system gaps, and limited community awareness [4, 5]. While public misconceptions about bowel symptoms may contribute, stigma appears to influence behaviours predominantly after diagnosis, particularly concealment, reduced healthcare engagement, and hesitancy to escalate therapy. Therefore, the greatest unmet need lies in post-diagnosis psychosocial support rather than in the diagnostic pathway itself. We appreciate the editorial highlighting the limitations of current assessment tools. Despite the use of the Perceived Stigma Scale (PSS)-IBD in multiple studies, only one study has validated it in patients with IBD [6]. We agree that PSS-IBD was adapted from the IBS perspective and may overlook uniquely IBD-related concerns such as stoma care, surgical history, or visible manifestations. The field urgently requires a dedicated, modern, culturally adaptable tool addressing: (i) internalised and enacted stigma separately, (ii) disclosure dynamics in school/workplace, (iii) gender, sexual identity, and body-image concerns, and (iv) stigma associated with advanced disease and surgery. We thank the editorial team for underscoring the hidden burden of stigma in IBD. We share the vision that bringing stigma measurement and management into mainstream IBD care can help improve outcomes beyond inflammation control alone. Our review aims to catalyse this shift, and we hope that future research will translate these insights into meaningful, accessible, and culturally competent clinical interventions. Suprabhat Giri: conceptualization, writing – original draft. Anuraag Jena: writing – review and editing. Vishal Sharma: writing – review and editing. Shaji Sebastian: writing – review and editing. The authors have nothing to report. The authors have nothing to report. The authors declare no conflicts of interest. This article is linked to Giri et al. papers. To view this article, visit https://doi.org/10.1111/apt.70448 and https://doi.org/10.1111/apt.70478. The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.