INTRODUCTION

Patients with ulcerative colitis (UC) and Crohn's disease (CD) mainly suffer from abdominal pain, diarrhea, and rectal bleeding.¹ In recent years, other symptoms, particularly fecal urgency and incontinence, have been increasingly recognized and reported in both inflammatory bowel disease (IBD) subtypes. Bowel urgency is characterized by a sudden, immediate, and almost non-controllable need to defecate.² Fecal incontinence is defined as the inability to control the passage of gas or stool through the anus, ranging from occasional soiling of underwear to a complete loss of bowel control.³ The pathophysiology of fecal urgency and incontinence remains elusive,⁴ but potentially chronic rectal inflammation results in fibrosis, which then decreases compliance of the rectal wall.^{5, 6}

Bowel urgency and fecal incontinence both negatively impact daily activities and quality of life, but these symptoms are still and often considered a taboo topic, even during physician encounters. Patients might feel embarrassed, which potentially results in underreporting.^7-11 In fact, as past studies have shown, bowel urgency remains an often-underestimated problem.^{12, 13} Only very recently, fecal urgency has come to attention in UC clinical trials as a potential and important patient-reported outcome that can be targeted by biological treatments,¹⁴ while in CD, it remains a neglected symptom. However, very little is known about the exact (patient-reported and real-world) prevalence of fecal urgency, the presence of fecal incontinence and differences between patients' and physicians' perceptions. Such a mismatch between patient and physician perception is a well-known problem from other aspects of IBD care.¹⁵

Given these uncertainties, we aimed to investigate patient-reported real-world prevalence of fecal urgency and incontinence among Swiss IBD patients, their potential impact on daily activities and quality of life, and patient satisfaction with physician encounters. Furthermore, we sought to explore—for the first time - a potential mismatch between patient and physician perspectives about the prevalence and impact of fecal urgency and incontinence.

METHODS

RESULTS

Fecal urgency

An increase in fecal urgency during a disease flare was experienced by 82.1% of patients, 15% suffered from fecal urgency regardless of disease activity, and only 2.9% never experienced this symptom. The number of morning stools and severity of fecal urgency (VAS 0–10) significantly increased during a flare (median number of stools 3 vs. 1, and median VAS 8 vs. 4, p < 0.0001). Fecal urgency at least on a daily basis (in a period without a flare) was seen in 66.9% of patients, while this proportion increased to 92.7% during a flare (p < 0.001). See Figure 1a. In a period without a flare, 48.7% patients did not tolerate fecal urgency more than 5 min, while this proportion increased to 85.2% during a flare (p < 0.001). Fecal urgency considerably impacted daily activities (VAS 5, IQR 3–8), and contributed to 60% of the self-estimated disease burden (IQR 40%–80%). However, 22.8% of patients had never talked about fecal urgency, but only 11.8% thought their physician underestimated the problem. Women did not report fecal urgency more often than males, but they were more severely affected (VAS 6 vs. 5, p = 0.0025).

UC and CD patients appeared to be similarly affected by fecal urgency. Almost all UC (98.5%) and CD (96.2%) patients experienced fecal urgency either during a flare or regardless of underlying disease activity. Fecal urgency at least on a daily basis was experienced by 65.9% of UC and 68.5% of CD patients (in a period without a flare). While this proportion increased during disease flares for both IBD subtypes, significantly more UC patients (96.2 vs. 89.9%, p = 0.004) suffered from fecal urgency during a flare. See Figure 1b. A similar proportion of patients did not tolerate fecal urgency more than 5 min (UC 45.2%, CD 52.4%) in a period without a flare, with a significant increase during a flare. However—again—during such a flare, significantly more UC patients experienced severe fecal urgency without tolerance of more than 5 min (88.9 vs. 81.7%, p = 0.016), compared to CD patients. The self-assessed severity of fecal urgency (VAS) during periods without a flare was higher in CD patients (VAS 4, IQR 2–6) than in UC patients (VAS 3, IQR 1–5, p < 0.001), while during flares, severity was higher in UC patients (VAS 9, IQR 8–10) compared to CD (VAS 8, IQR 7–9, p = 0.002). The impact on daily activity was considerable in both UC (VAS 6, IQR 3–8) and CD (VAS 5, IQR 3–8). See Figure 2a. Nevertheless, the contribution to disease burden was estimated to be higher in UC than CD (60 vs. 50%, p = 0.0275). A considerable proportion of both UC (19.9%) and CD patients (24.9%) had never talked to their physicians about fecal urgency, but only a small proportion of UC (13.4%) and CD (10.4%) patients thought that their physician underestimates the problem of fecal urgency, To disentangle the association of IBD subtype with severity of fecal urgency, we performed a multivariate logistic regression model with the following co-variates: history of vaginal delivery, sex, age, presence of severe disease (defined by treatment with biologics or a small-molecule), IBD subtype, history of previous intestinal surgery. Presence of moderate to severe fecal urgency defined by VAS >5 (on a scale from 0 to 10) was the dependent variable. In this model—after adjusting for the abovementioned covariates—UC was significantly associated with moderate to severe fecal urgency (OR 1.65, 95% CI 1.13–2.41, p = 0.010), as it was seen for previous intestinal surgery (OR 2.07, 95% CI 1.36–3.18, p < 0.001). For details, see Table S1.

DISCUSSION

In this online patient and physician survey, we analyzed the prevalence and impact of fecal urgency and incontinence, and a potential mismatch between patient and physician perception. Our main findings are: (1) Fecal urgency and incontinence are frequent and represent two burdensome symptoms in IBD patients. (2) Prevalence of urgency and incontinence is comparable between UC and CD patients. (3) However, UC is an independent predictor for the presence of moderate to severe fecal urgency and fecal incontinence. And (4) a considerable mismatch was found between the physician and patient perception as to whether or not fecal urgency and incontinence are discussed during patient encounters.

Fecal urgency and incontinence are frequently reported by IBD patients and their impact on quality of life and contribution to disease burden is considerable. We found that 97% of IBD patients at least once (ever) experienced fecal urgency, while almost 50% suffered from various degrees of fecal incontinence. These numbers are even higher than previously reported, where prevalence of fecal urgency was estimated at between 60% and 83%,^{16, 17} and the pooled prevalence of fecal incontinence was 37%,⁸ although the need for diapers/pads and protection was considerably higher in the CONFIDE UC patient survey, which used a similar definition for fecal incontinence (45% of patients with diapers/pads at least once a week).¹⁸ High rates of fecal incontinence in our study could be attributed to the chosen definition with inclusion of uncontrolled passage of gas (not only stool), and the absence of a symptom duration as a prerequisite (such as a 3 months period in the ROME IV criteria).¹⁹ Prevalence of fecal urgency appears to be particularly high during disease flares, which goes in line with previous findings from Kulyk et al. and Wang et al. showing that presence of urgency is associated with disease activity.^{20, 21} Importantly and surprisingly, prevalence of both fecal urgency and fecal incontinence was comparable in UC and CD patients. Thus, although underappreciated,¹² fecal urgency and incontinence are not only a problem in UC but also in IBD in general. Overrepresentation of colonic CD could have potentially confounded these results, but data on disease location are missing. In contrast to IBD, fecal urgency appears to be a negligible problem in otherwise healthy individuals.²² Additionally, both symptoms have a considerable impact on daily activities and considerably contribute to the self-estimated disease burden in CD and UC. This goes in line with previous findings showing that sudden need for bowel movement or incontinence impacts health-related quality of life by making the patients feel embarrassed, affecting relationships, or having an impact on work.⁷ Nevertheless—although frequent in both IBD subtypes—UC is associated with a more severe presentation of fecal urgency and incontinence, as shown by a multivariate regression model. Assessment of fecal urgency appears to be also important from a follow-up perspective as a recent study has demonstrated that patients showing improvement of fecal urgency achieve other outcome parameters more likely.²³

IBD specialists acknowledge the importance of fecal urgency and fecal incontinence. However, they appear to overestimate the problem when compared with their patients. Indeed, this difference between patient and physician ratings was significant and also clinically meaningful. This somehow contradicts previous findings where Rubin and colleagues showed that physicians tend to underestimate fecal urgency, particularly in CD.¹² Here, a possible selection bias has to be taken into account, as providers interviewed in our survey were from academic centers that manage highly complex IBD cases. In addition, recent approval of Mirikizumab by the Swiss Medical Agency (Swissmedic) might have sharpened gastroenterologists' perspective on fecal urgency and incontinence in the past, as both were clinical outcomes in the respective approval studies.¹⁴ Thus, our findings cannot be extrapolated to gastroenterologists in private practice with a smaller IBD patient volume or physicians from other disciplines (e.g. general practitioner).

Importantly, a considerable mismatch was seen when comparing patient and physician perceptions of patient encounters in outpatient clinics. Almost a quarter of patients have never discussed fecal urgency with their physician. Similarly, 30% of patients never talked about fecal incontinence, and 8% would like to talk more. In contrast, all interviewed gastroenterologists stated to regularly inquire about both symptoms at outpatient visits. Such a mismatch between patient and physician perceptions and views has been frequently reported in the medical literature in general, but also for the IBD field in particular. In IBD, this mismatch is especially seen when investigating psychological aspects.¹⁵ In our study, however, we reveal for the first time that while physicians think they inquire about symptoms, patients do not perceive it. The European federation of Crohn's and ulcerative colitis associations has recently shown that half of physicians in Europe do not inquire their IBD patients about their quality of life and nearly half of patients do not initiate such a conversation with their physicians.²⁴ Possible explanations are fear of surgery, lack of trust, low self-esteem, and physicians considered too busy or having lack of interest.^{10, 25} Possible communication barriers are the (over)use of medical jargon, language barriers or underuse of direct questions. Taken together, our and previous findings highlight the need for improvement of communication skills in IBD care.

Our study has several limitations: Due to language restrictions, our results are limited to the German-speaking part of Switzerland. Moreover, due to the nature of the survey, it was not possible to account for confounding factors such as disease course, disease location and score-based disease severity. It could be speculated that patients with more severe symptoms were more likely to participate in the survey. Thus, our findings cannot be extrapolated 1:1 to the general IBD population. In addition, both surveys (patient and physician questionnaires) were newly developed for the purpose of this study and therefore do not represent standardized or validated instruments. This strategy was chosen to keep the surveys as simple as possible. However, the absence of validated instruments such as the urgency numerical rating scale or fecal incontinence quality of life could have impacted robustness and generalizability of our results.^{14, 26} The patient questionnaire did not ask for the presence of irritable bowel syndrome (IBS) as a comorbidity; thus, we cannot exclude that concomitant IBS contributed to the presence of fecal urgency or incontinence. In fact, 39% of IBD patients are known to suffer from IBS symptoms,²⁷ although fecal incontinence might be less frequent in IBS than in IBD.²⁸ The survey is—as it is known for surveys in general—subject to a so-called recall bias. Thus, the importance of fecal urgency and incontinence might have been overestimated. Although it was asked for repetitive episodes, it cannot be ruled out that some patients with a single episode of fecal incontinence stated to suffer from fecal incontinence with a frequency of less than once per month. However, on the other hand, the presence of fecal incontinence might also have been missed in some patients since we did not ask for coping strategies (such as staying at home in close proximity to a toilet). Finally, the physicians included in the physician survey were all highly experienced IBD experts; thus, our findings cannot be extrapolated to the general practicing gastroenterologist.

In conclusion, fecal urgency and incontinence are burdensome symptoms in IBD, with a similar prevalence in UC and CD. Treating physicians are aware of and might even overestimate the problem. However, a considerable mismatch was found between the physician and patient perception as to whether or not fecal urgency and incontinence are discussed during patient encounters. In order to align patient needs and physician perspective, open questions in a trustable atmosphere—particularly for taboo symptoms—appear to be key for both UC and CD. Patient-centered studies properly assessing their needs and potential gaps in clinical care are needed.

AUTHOR CONTRIBUTIONS

Study concept and design: Nadia Wespi, Stephan Vavricka and Thomas Greuter; acquisition of data: Nadia Wespi, Stephan Vavricka and Thomas Greuter; analysis data: Nadia Wespi, Stephan Vavricka and Thomas Greuter; interpretation of data: Nadia Wespi, Stephan Vavricka, Stephan Brand, Patrick Aepli, Emanuel Burri, Benjamin Misselwitz, Frank Seibold, Petr Hruz, Laurent Peyrin-Biroulet, Alain Schoepfer, Luc Biedermann, Christiane Sokollik, Gerhard Rogler and Thomas Greuter. drafting of manuscript: Nadia Wespi and Thomas Greuter; critical revision of the manuscript for important intellectual content: Stephan Vavricka, Stephan Brand, Patrick Aepli, Emanuel Burri, Benjamin Misselwitz, Frank Seibold, Petr Hruz, Laurent Peyrin-Biroulet, Alain Schoepfer, Luc Biedermann, Christiane Sokollik, Gerhard Rogler; supervision: Stephan Vavricka and Thomas Greuter.

CONFLICT OF INTEREST STATEMENT

SV has received consulting fees and unrestricted research grants from Abbott, Falk Pharma GmbH, Ferring Pharmaceuticals, Janssen, MSD, Pfizer Inc, Sanofi-Aventis, Takeda, Tillotts, UCB, and Vifor. SB declares the following conflicts of interests: SB received speaker's honoraria from Abbvie, Falk Foundation, Ferring, Janssen, MSD, Takeda, UCB, and Vifor and participated in advisory boards of Abbvie, BMS, Celgene, Janssen, MSD, Pfizer, Pierre Fabre, Roche, Takeda, and UCB. SB has received an educational grant from Takeda. PA has received consulting and speaker's fees from Boston Scientific, honoraria for advisory boards from Janssen and travel grants from Abbvie. EB has received consultant and/or speaker's fees from Abbvie, Allergan, Amgen, Buehlmann Laboratories, Boston Scientific, Bristol Myers Squibb, Dr. Falk Pharma, Ewopharma AG, Ferring, Janssen-Cilag, MSD, Norgine, Pfizer, Pierre Fabre, Sandoz, Takeda, Tillots, and Vifor. BM reports traveling fees from Takeda, Vifor, Gilead and MSD. BM received fees as a speaker from Takeda. BM has served at an advisory board for Gilead, Takeda and BMS. BM has received research grants from MSD and BMS unrelated to the submitted work. FS is medical adviser for Abbvie, BMS, Eli Lilly, Dr Falk, MSD, Janssen, Takeda. PH has received consulting fees from Abbvie, Bristol Myers Squibb, Falk Pharma GmbH, Janssen, iQone, Lilly, MSD, Pfizer Inc, Sanofi-Aventis, Takeda, and Vifor. LPB reports the following conflicts of interest: Consulting fees from Abbvie, Abivax, Adacyte, Alimentiv, Amgen, Applied Molecular Transport, Arena, Banook, Biogen, BMS, Celltrion, Connect Biopharm, Cytoki Pharma, Enthera, Ferring, Fresenius Kabi, Galapagos, Genentech, Gilead, Gossamer Bio, GSK, IAC Image Analysis, Index Pharmaceuticals, Inotrem, Janssen, Lilly, Medac, Mopac, Morphic, MSD, Nordic Pharma, Novartis, Oncodesign Precision Medicine, ONO Pharma, OSE Immunotherapeuthics, Pandion Therapeuthics, Par' Immune, Pfizer, Prometheus, Protagonist, Roche, Samsung, Sandoz, Sanofi, Satisfay, Takeda, Telavant, Theravance, Thermo Fischer, Tigenix, Tillots, Viatris, Vectivbio, Ventyx, Ysopia; Research grants from Celltrion, Fresenius Kabi, Medac, MSD, Takeda; Speaker's honoraria from. Abbvie, Amgen, Arena, Biogen, Celltrion, Ferring, Galapagos, Genentech, Gilead, Janssen, Lilly, Medac, MSD, Nordic Pharma, Pfizer, Sandoz, Takeda, Tillots, Viatris; and travel grants from Abbvie, Amgen, Celltrion, Connect Biopharm, Ferring, Galapagos, Genentech, Gilead, Gossamer Bio, Janssen, Lilly, Medac, Morphic, MSD, Pfizer, Sandoz, Takeda, Thermo Fischer, Tillots. AS has received consulting fees and unrestricted research grants from Abbvie, Dr Falk Pharma, Ferring Pharmaceuticals, Janssen, MSD, Pfizer, Sanofi-Aventis, Takeda, Tillotts, UCB, and Vifor. LB has received fees for consulting/advisory board from Abbvie, Amgen, Bristol Myers Squibb, MSD, Vifor, Dr. Falk Pharma, Esocap, Janssen, Lilly, Calypso, Ferring, Pfizer, Takeda, Janssen, Sanofi. GR has consulted to Abbvie, Arena, Augurix, BMS, Boehringer, Calypso, Celgene, FALK, Ferring, Fisher, Genentech, Gilead, Janssen, Lilly, MSD, Novartis, Pfizer, Phadia, Roche, UCB, Takeda, Tillots, Vifor, Vital Solutions and Zeller; GR has received speaker's honoraria from Abbvie, Astra Zeneca, BMS, Celgene, FALK, Janssen, MSD, Pfizer, Phadia, Takeda, Tillots, UCB, Vifor and Zeller; GR has received educational grants and research grants from Abbvie, Ardeypharm, Augurix, Calypso, FALK, Flamentera, MSD, Lilly, Novartis, Pfizer, Roche, Takeda, Tillots, UCB and Zeller. GR is cofounder and head of the scientific advisory board of PharmaBiome. TG has consulting contracts with Sanofi-Regeneron, Bristol-Myers Squibb, Takeda, Abbvie, Janssen, Lilly, Pfizer, and Dr. Falk Pharma GmbH, received travel grants from Dr. Falk Pharma GmbH and Vifor, speaker's fee from Norgine and Amgen, and an unrestricted research grant from Novartis. The other authors have no conflicts of interest to declare. No company representative was involved in the conception, writing, or financing of this study.