Inflammatory bowel disease (IBD), namely Crohn’s disease (CD), ulcerative colitis (UC), and IBD unclassified (1), is an immune-mediated chronic condition characterized by periods of relapse and remission (2), that has a deep impact on the patients’ health, quality of life, and psychological dimension. This is the consequence of a) pervasive symptoms (3) experienced by patients with IBD, such as chronic abdominal pain, diarrhoea, rectal bleeding, and fatigue; b) the risk of receiving surgical treatment (4) and; c) the marked impact of IBD on sexual life (4). Another cause of psychological burden in patients with IBD is social stigma (5, 6) which is defined as the feeling or fear that other people may have a negative attitude towards someone due to specific attributes (6–8), leading to a loss of status quo and to discrimination (7). In a clinical setting, stigma can be categorized into perceived stigma (when a negative attitude is felt by an individual), enacted stigma (discriminating acts), and internalized, self-stigma (8). Stigma is known to have a detrimental impact on several chronic diseases, such as psychiatric disorders (9), HIV (10, 11), and epilepsy (12). Stigma may be experienced by up to 84% of patients with IBD, regardless of disease activity (13); moreover, stigma is also associated with a higher prevalence of depression, social withdrawal, and poorer quality of life (14–16). Stigmatisation can be measured in patients with BID with a scale adapted from patients with irritable bowel syndrome (IBS), known as Perceived Stigma Scale (PSS) (17, 18).

Resilience is a positive psychological resource that may potentially counteract the detrimental effects of stigma on quality of life (19). Resilience can be found in three main dimensions, namely personality traits (the innate ability to address negative situations), outcomes (the positive impact that resilience has on the disease’s impact), and processes (the dynamic process, namely coping with a chronic condition) (20). Interestingly, resilience in IBD has been found to be associated with a more favourable outcome (21–23), and it is linked to some individual characteristics, including age, sex, employment status (24, 25). Additionally, it can be trained via resilience-enhancing programs and the development of mindfulness (26–28). Resilience can be measured with objective scales, and one of the most used worldwide is the Connor-Davidson Resilience Scale (CD-RISC25) (29).

Finally, self-efficacy (SEF) and self-esteem (SES) may also play an important role in relation to stigma and resilience. SEF is defined as the confidence to independently manage the disease without needing a caregiver (30) and it has been found to favourably affect the outcome of chronic diseases (31), though being a task-specific skill (31–33) and therefore a non-transferable skill from other aspects of life; furthermore, self-efficacy can predict health promoting behaviour in chronic ill patients, regardless of disease activity and severity (34). SES instead plays an important role in mental health, as a lack of it has been linked to a higher rate of depression and anxiety (35, 36); notably, in the IBD setting, it can be measured by a scale developed by Rosenberg et al. (36, 37).

Because of limited data on stigma in IBD and because of the absence of a validated scale for PSS-IBD in the Italian language, we previously performed a study for validating an Italian version of the PSS-IBD (29). By using a three-step method, the validation showed acceptable translation and psychometric properties, with an excellent item internal consistency (Cronbach alpha 0.87). Additionally, we assessed stigmatisation, resilience, SEF, and SES at baseline; we found that resilience negatively correlated with perceived stigma. In the present paper we report the one-year follow-up results of the aforementioned prospective study (29), as well as other important outcomes, including the associations between stigma, resilience, SEF, and SES in relation to IBD activity.

In our study, 105 patients of the previously 125 enrolled (84%) completed the follow-up. The demographic and clinical characteristics are summarized in Table 1 . Of the overall 105 patients, 45.2% had Crohn’s disease and 54.8% had ulcerative colitis. Regarding therapy, 14 (13.5%) of patients were under biological therapy, with infliximab being the most prescribed (7 patients; 50%) and 38 (36%) were given 5-aminosalycilic drugs. Finally, five (4%) patients were not taking medications.

In this prospective study we have shown for the first time that stigmatisation, resilience, SEF and SEM did not change over a one-year time span, suggesting that, based on the information gathered, these characteristics may be independent from IBD severity or IBD flares. Furthermore, we found an inverse correlation of stigma with resilience, SEF and SES, suggesting an important role that these variables may have on preventing stigmatisation.

The first endpoint of our study consisted in the follow-up evaluation of the CD-RISC25, the PSS-IBD, and the SEF and SES scales in order to assess how they changed over time. Interestingly, for all of these scales, no statistical difference emerged, suggesting that stigma and resilience are stable over time in IBD, at least over one year, differently to what is seen for IBS (35, 37). Furthermore, a strong “floor effect” was evident with regard to stigmatisation; this was, in fact, particularly low, especially the HP sub-score, probably because these patients were accessing a tertiary referral centre for IBD management, with well-trained doctors and nurses having a long lasting experience, as we postulated in our previous paper (29). Even considering this explanation, the levels of stigmatisation experienced by our patients were even lower than those reported in a similar, previously published, paper (18). We may speculate that the patients included in our study had, on average, a longstanding disease, and hence they had more time to cope and adapt to IBD. There may also be other factors, namely cultural and behavioural, that were not specifically addressed in this study. To note, the follow-up period coincided with the outbreak of the COVID-19 pandemic that may have played an independent role in determining stigma and resilience levels.

Interestingly, what emerged from our second endpoint was that stigma and resilience have an inverse correlation, as well as SES and SEF, with regard to stigma. We noted that CD-RISC25 was inversely related to the PSS-SO, PSS-HP (although at the limit of significance), and PSS-SUM. Stigma, SEF and SES had a similar trend. This suggests that interventions aimed at improving resilience, SES, and SEF may potentially counteract the perceived stigmatisation; therefore, interventional studies are needed to clarify this topic, as there is no available evidence.

Finally, in the third endpoint of our study we noted that resilience was inversely associated with an active disease, while stigma was inversely correlated with disease activity, although not significantly. Lastly, reaching disease remission at one year did not have any statistically significant correlation with the CD-RISC25 or the PSS-IBD. These results may be related to the small sample size of patients with an active disease who reached remission in our cohort. Nonetheless, various results can be found in previously published papers (13, 14, 29) in this regard, although with a small sample size. In our previously published paper, only for UC patients, disease activity correlated with higher PSS-SO, while no other associations among PSS and disease activity in CD were noticed (29). In another study, disease activity was found to worsen quality of life, but a formal correlation between stigma and disease activity was not made (13). Finally, in a study looking at stigma and depressive symptoms in young IBD patients, there were too few patients with an active disease for drawing firm conclusions (14). Hence, further larger studies are needed to better address this issue.

Our study certainly has some limits. First, our cohort had a consistent floor effect both on perceived stigma and disease activity, and the follow-up period was affected by the COVID-19 outbreak. The sample size was relatively small, therefore, further studies with larger cohorts are needed to better assess these topics. Our study has some strengths as well, as it was the first prospective, clinical study that evaluated how stigma and resilience changed over time in in an Italian cohort of IBD patients, demonstrating not only that these two characteristics are stable over one year, but even that SEF and SES are stable as well. Furthermore, we noticed that stigma is inversely correlated with resilience, SES and SEF, and this finding paves the way for a more holistic approach that should include a psychological assessment and support in IBD patients.

IBD patients are complex patients who may be burdened by psychological and physical issues that need to be recognised and correctly assessed by their treating physicians, in order to offer to these patients a higher quality of life. A more holistically-driven approach, with the intervention of a multidisciplinary team may help bringing a special focus on reducing stigma and improving resilience, SEF, and SES in this population. Other factors potentially affecting stigma and resilience in IBD should be investigated.

The original contributions presented in the study are included in the article/supplementary material. Further inquiries can be directed to the corresponding author.

The studies involving human participants were reviewed and approved by San Matteo Hospital Foundation. The patients/participants provided their written informed consent to participate in this study.

All authors participated in the drafting of the manuscript or critical revision of the manuscript for important intellectual content and provided approval of the final submitted version. All authors contributed to collect data, writing the manuscript, and reviewing the paper.