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Bowel urgency, the sudden or immediate need for a bowel movement, is one of the most common and disruptive symptoms experienced by patients with ulcerative colitis. Distinct from the separate symptom of increased stool frequency, bowel urgency has a substantial negative impact on quality of life and psychosocial functioning. Among patients with ulcerative colitis, bowel urgency is one of the top reasons for treatment dissatisfaction and one of the symptoms patients most want improved. Patients may not discuss bowel urgency often due to embarrassment, and healthcare providers may not address the symptom adequately due to lack of awareness of validated tools and/or knowledge of the importance of assessing bowel urgency. The mechanism of bowel urgency in ulcerative colitis is multifactorial and includes inflammatory changes in the rectum that may be linked to hypersensitivity and reduced compliance of the rectum. Responsive and reliable patient-reported outcome measures of bowel urgency are needed to provide evidence of treatment benefits in clinical trials and facilitate communication in clinical practice. This review discusses the pathophysiology and clinical importance of bowel urgency in ulcerative colitis and its impact on quality of life and psychosocial functioning. Patient-reported outcome measures developed to assess the severity of bowel urgency in ulcerative colitis are discussed alongside overviews of treatment options and clinical guidelines. Implications for the future management of ulcerative colitis from the perspective of bowel urgency are also explored.

Background The Communicating Needs and Features of IBD Experiences (CONFIDE) study aimed to evaluate the experience and impact of ulcerative colitis (UC) symptoms on patients’ lives and elucidate gaps in communication between patients and health care professionals (HCPs). Methods Online, quantitative, cross-sectional surveys of patients with moderate-to-severe UC and HCPs responsible for making prescribing decisions were conducted in the United States (US) and Europe. UC disease severity was defined by treatment, steroid use, and/or hospitalization history. Results Surveys were completed by 200 US and 556 European patients and 200 US and 503 European HCPs. The most common UC symptoms experienced in the preceding month were diarrhea, bowel urgency, and increased stool frequency. Many patients (45.0% of US patients, 37.0% of European patients) reported wearing diapers/pads/protection at least once a week in the past 3 months due to fear/anticipation of fecal urge incontinence. The top reasons for declining participation in social events, work/school, and sports/exercise were due to bowel urgency and fear of fecal urge incontinence. HCPs ranked diarrhea, blood in stool, and increased stool frequency as the most common symptoms. While over half HCPs ranked bowel urgency as a top symptom affecting patients’ lives, less than a quarter ranked it in the top 3 most impactful on treatment decisions. Conclusions Similar disparities exist between patient and HCP perceptions in the United States and Europe on the experience and impact of UC symptoms. Bowel urgency has a substantial and similar impact on US and European patients, is underappreciated by HCPs, and should be addressed during routine appointments.

Abstract Background Bowel urgency is bothersome in patients with ulcerative colitis (UC) or Crohn’s disease (CD) and impacts their well-being but remains underappreciated in clinical trials and during patient–healthcare provider interactions. This study explored the experiences of bowel urgency and bowel urgency-related accidents to identify the concepts most relevant and important to patients. Methods Adults with a diagnosis of moderate-to-severe UC or CD for ≥6 months and experience of bowel urgency in the past 6 months were included. Qualitative, semi-structured interviews were conducted via telephonic/Web-enabled teleconference. Interview transcripts were coded and analyzed in ATLAS.ti 9 using a systematic thematic analysis. Results In total, 30 participants with UC or CD (n = 15 each) (mean age 52 and 50 years, respectively) participated in the interviews. The majority of participants were receiving biologic and/or conventional therapy (80% and 87%, respectively). Most participants with UC (87%) and all with CD experienced bowel urgency-related accidents. The most frequently reported symptoms co-occurring with bowel urgency were abdominal pain, fatigue, and abdominal cramping. Abdominal pain and abdominal cramping were the most bothersome co-occurring symptoms of bowel urgency and bowel urgency-related accidents. In both groups, participants reported decreased frequency of bowel urgency and not wanting to experience bowel urgency-related accidents at all as a meaningful improvement. Conclusions Participants with UC or CD expressed bowel urgency and bowel urgency-related accidents to be bothersome and impactful on their daily lives despite use of biologic and/or conventional therapy. These findings underscore the need for development of patient-reported outcome measures to assess bowel urgency in clinical settings. Lay Summary Bowel urgency and bowel urgency-related accidents are accompanied by several bothersome symptoms and considerably impact patients’ quality of life, highlighting the need to develop a patient-reported outcome measure for assessing and addressing bowel urgency in clinical settings.

Background Bowel urgency, the sudden or immediate need to have a bowel movement, is a common, bothersome and disruptive symptom of ulcerative colitis (UC). UC treatment goals include control of urgency; however, it is not consistently assessed in UC clinical trials. The Urgency Numeric Rating Scale (NRS) is a new patient-reported measure to assess severity of bowel urgency in adults with UC developed in accordance with Food and Drug Administration guidelines. Methods Qualitative interviews were used to develop Urgency NRS. The scale asks patients to report the immediacy status of their UC symptom over the past 24 h on an 11-point horizontal numeric rating scale [0 (No urgency) to 10 (Worst possible urgency)]. Higher scores indicate worse urgency severity. A 2-week diary study assessed floor and ceiling effects, test–retest reliability (intraclass correlation coefficient (ICC) (2,1) between Week 1 and 2), and construct validity (Spearman correlation using Week 1 scores). Weekly scores were calculated as mean score over each 7-day period. Results Qualitative interviews with 16 UC patients (mean age 37.9 ± 11.6 years; 50% female; 56% White) confirmed relevance, content, and comprehensiveness. The 2-week diary study included 41 UC patients (mean age 44.2 ± 14.6 years; 51% female; 56% White). No ceiling or floor effects were identified. Test–retest reliability was high (ICC = 0.877). Average Urgency NRS and patient global rating of severity scores were highly correlated, with a moderate correlation between average Urgency NRS and stool frequency, demonstrating construct validity. Conclusions Bowel urgency is a distinct symptom of UC. The Urgency NRS is a well-defined, content-valid, and reliable measurement of bowel urgency in adults with UC.

Moderate-to-severe ulcerative colitis (UC) and Crohn's disease (CD) are associated with substantial quality of life and economic burdens (Kawalec, 2016). The Communicating Needs and Features of IBD Experiences (CONFIDE) study aims to further the understanding of the experience and impact of symptoms on patients' lives and elucidate any gaps in communication between healthcare professionals (HCPs) and patients with moderate-to-severe UC and CD in the United States (US), Europe, and Japan. These data focus on US patients with UC and US HCPs. An online, quantitative, cross-sectional survey was conducted with HCPs (n=200) and patients with moderate-to-severe UC (n=200) in the US between May (HCPs) and July (patients) 2021. Moderate-to-severe UC was defined using criteria based on previous treatment experience, steroid use and/or hospitalization. The HCP survey included physicians (89%) and non-physician HCPs (11%) who are responsible for making prescribing decisions. Data collected included perspectives on the experience and impact of symptoms in patients with moderate-to-severe UC. The top three symptoms currently (past month) and ever suffered by patients (mean age: 40.4, 61.5% male) were diarrhea (62.5% and 74.0%, respectively), bowel urgency (47.0% and 61.5%) and increased stool frequency (38.5% and 57.5%). Blood in stool was reported by 27.0% of patients as currently suffering, and 51.0% ever. According to HCPs (78.0% male), the top three symptoms reported by patients were diarrhea (73.5% ranked in top 3), blood in stool (69.0%), and increased stool frequency (37.5%). Bowel urgency was recorded in the top 3 patient-reported symptoms by 24.0% of HCPs. Patients self-rated their disease-severity as 10.5% (n = 21) mild UC, 71.0% (n = 142) moderate UC, 17.5% (n = 35) severe UC, and 1.0% (n = 2) patients did not know. Bowel urgency was more frequently reported in patients with severe disease (62.9%, n = 22) when compared with those with mild-to-moderate disease (42.9%, n = 70). Among the overall patient population, 76.5% (n = 153) were receiving advanced therapies (biologic or novel oral therapy). Bowel urgency was currently experienced by 46.4% of these patients. Only 38.2% of patients felt completely comfortable reporting bowel urgency to their HCP. Of patients not comfortable reporting bowel urgency, 62.2% (n = 23) reported they felt embarrassed talking about it. Among HCPs, 75.5% (n = 151) reported they proactively discussed bowel urgency at routine appointments. Those HCPs who reported that they do not proactively discuss bowel urgency (24.5%, n = 49) cited the main reason as they expect the patient to bring it up (46.9%, n = 23). Bowel urgency is the second-most commonly reported symptom by patients with moderate-to-severe UC but is not among the HCP-perceived top three most reported symptoms. A substantial proportion of patients with moderate-to-severe UC receiving advanced therapies continue to report bowel urgency. A communication gap between patients and HCPs was identified and highlights the under appreciation of bowel urgency as an important symptom impacting patients' daily life.

Abstract Background Rectal urgency is a common but under-reported inflammatory bowel disease (IBD) symptom. The present study assessed the prevalence of rectal urgency and its association with disease activity and patient-reported outcomes (PROs) among patients with ulcerative colitis (UC) or Crohn’s disease (CD) in a real-world setting. Methods Data were drawn from the 2017–2018 Adelphi IBD Disease Specific Programme™, a multi-center, point-in-time survey of gastroenterologists and consulting adult patients with UC or CD in France, Germany, Italy, Spain, the United Kingdom, and the United States. Gastroenterologists completed patient record forms and patients completed self-reported forms. Analyses were conducted separately for patients with UC or CD. Patient demographics, clinical characteristics, disease activity, symptoms, and PROs were compared between patients with and without rectal urgency. Results In total, 1057 patients with UC and 1228 patients with CD were included. Rectal urgency was reported in 20.2% of patients with UC and 16.4% with CD. Patients with rectal urgency were more likely to have moderate or severe disease (UC or CD: P < .0001), higher mean Mayo score (UC: P < .0001), higher mean Crohn’s Disease Activity Index score (CD: P < .0001), lower Short IBD Questionnaire scores (UC or CD: P < .0001), and higher work impairment (UC: P < .0001; CD: P = .0001) than patients without rectal urgency. Conclusions Rectal urgency is a common symptom associated with high disease activity, decreased work productivity, and worse quality of life. Further studies are needed to include rectal urgency assessment in routine clinical practice to better gauge disease activity in patients with UC or CD. Lay Summary Rectal urgency in patients with Crohn’s disease or ulcerative colitis is commonly associated with high disease activity, decreased work productivity, and worse quality of life. Results highlight the need to assess rectal urgency and factor it into decision-making processes.

Introduction Plaque psoriasis is a chronic skin disease where genital involvement is relatively common. Yet health care providers do not routinely evaluate psoriasis patients for genital involvement and patients do not readily initiate discussion of it. Methods A qualitative study of 20 US patients with dermatologist-confirmed genital psoriasis (GenPs) and self-reported moderate-to-severe GenPs at screening was conducted to identify key GenPs symptoms and their impacts on health-related quality of life (HRQoL). Results Patients had a mean age of 45 years, 55% were female, and patients had high rates of current/recent moderate-to-severe overall (65%) and genital (70%) psoriasis. Patients reported the following GenPs symptoms: genital itch (100%), discomfort (100%), redness (95%), stinging/burning (95%), pain (85%), and scaling (75%). Genital itching (40%) and stinging/burning (40%) were the most bothersome symptoms. Impacts on sexual health included impaired sexual experience during sexual activity (80%), worsening of symptoms after sexual activity (80%), decreased frequency of sexual activity (80%), avoidance of sexual relationships (75%), and reduced sexual desire (55%). Negative effects on sexual experience encompassed physical effects such as mechanical friction, cracking, and pain as well as psychosocial effects such as embarrassment and feeling stigmatized. Males reported a higher burden of symptoms and sexual impacts. Other HRQoL impacts were on mood/emotion (95%), physical activities (70%), daily activities (60%), and relationships with friends and family (45%). These impacts significantly affected daily activities. Physical activities were affected by symptoms and flares, and increased sweat and friction worsened symptoms. Patients reported daily practices to control outcomes. Conclusion The high level of reported symptoms and sexual and nonsexual impacts reflects the potential burden of moderate-to-severe GenPs. GenPs can impact many facets of HRQoL and providers should evaluate their patients for the presence of genital psoriasis and its impact on their quality of life. Funding Eli Lilly and Company. Plain Language Summary Background Psoriasis is a skin disease that can cause itchy, raised red patches of skin. Currently, psoriasis cannot be cured but medicines can make the patches smaller or go away completely. The patches can occur anywhere on the body. Sometimes people get them in their genital area. However, people are sensitive about this area and may not tell their doctor. Their doctor may not look or ask either. What We Did We interviewed 20 men and women who had moderate-to-severe genital psoriasis. We asked about their health-related quality of life, including their sex life. What We Learned All 20 people said they had symptoms of itching and discomfort in their genital area. Most people also had symptoms of redness, stinging or burning, pain, and scaling (flaky skin). Most people said symptoms affected their sex life. Sexual activity was less comfortable. People had sexual activity less often. Physical reasons, such as pain, bothered some people. Emotional reasons, such as being embarrassed, bothered other people more. People said the genital psoriasis affected how they felt. For example, it made them stressed, angry, or sad. Genital psoriasis made physical activities such as walking and running more uncomfortable for many people, especially when symptoms “acted up.” Sweating a lot, wearing tight underwear, or working a long day could make symptoms worse too. About half the people spent less time with their family and friends because of their symptoms. People also did things to try to reduce their symptoms. Some people wore loose clothes or soaked in a bathtub every night or after sex. Other people carried cream (to stop the itch) with them all the time. Conclusion Other people may not experience what these 20 people did. However, having genital psoriasis can significantly impact someone’s life. Patients and doctors should talk about it.