DOI: 10.6084/m9.figshare.29528556
title: Impact of moderate-to-severe ulcerative colitis and Crohn’s disease on sexual activity: United States and European patient perspectives from the communicating needs and features of IBD experiences (CONFIDE) survey

description: Ulcerative colitis (UC) and Crohn’s disease (CD) negatively affect patients’ quality-of-life, and their impact on patients’ sexual health is rarely addressed. This study assessed the impact of moderate-to-severe UC and CD on sexual activity using United States (US) and European data from the Communicating Needs and Features of IBD Experiences (CONFIDE) survey. Online, quantitative, cross-sectional surveys were conducted among patients with moderate-to-severe UC or CD and health care professionals (HCPs). Moderate-to-severe UC or CD were defined using criteria based on previous treatment, steroid use, and/or hospitalization. The surveys were developed with input from HCPs and patient advisors and included questions on demographics, UC- or CD-related symptoms, and the impact of UC or CD on sexual health. Patients were asked whether they had avoided/decreased sexual activity in the past 3 months and their UC- or CD-related reasons. Patients and HCPs rated levels of impact of UC or CD on sex life/sexual intimacy and patients rated how bowel urgency interferes with their relationship with spouse/partner. Additionally, questions assessing the psychosocial health of patients and identifying gaps and barriers in HCP-patient communication were also included. Descriptive statistics were used to summarize the data. Surveys were completed by 200 US and 556 European patients with UC and 215 US and 547 European patients with CD. Of these, most US (UC: 63%, CD: 69%) and European (UC: 53%, CD: 56%) patients reported avoiding or decreasing sexual activity due to UC or CD in the past 3 months; however, the proportion was significantly greater among US patients (<i>p</i> &lt;.05). Among patients with UC, a significantly greater proportion of female patients reported altered sexual activity due to their disease. A similar proportion of male and female patients with CD reported impaired sexual activity. Most common UC-related reasons for avoidance of sexual activity were bowel urgency among US patients and fear of faecal seepage among European patients. Among patients with CD, the most common reason was fear of bowel urgency-related accidents in both US and European patients. Patients reported a negative impact of bowel urgency on their relationship with spouse/partner. In the US and Europe, most patients reported avoiding or decreasing sexual activity due to moderate-to-severe UC or CD, with bowel urgency and bowel urgency-related accidents being common reasons. Assessing and addressing sexual health in routine clinical care should be considered when treating UC and CD. Ulcerative colitis (UC) and Crohn’s disease (CD) are long-term inflammatory bowel diseases (IBD). IBD symptoms affect the sexual health of the patients; however, the specific reasons have not been well studied.The CONFIDE surveys aimed to understand the impact of IBD symptoms on sexual health and identify gaps in the communication between health care professionals (HCPs) and patients with moderate-to-severe UC or CD in the United States (US) and Europe.This study shows that one of the main reasons for decreased sexual activity among patients with UC or CD in the past three months was bowel urgency-related accidents (can’t make it to the bathroom in time) in both the US and Europe.Overall, both male and female patients have reported decreased sexual activity. Also, both patients and HCPs reported a considerable impact of UC or CD on sex life/sexual intimacy, with HCPs reporting an even greater observed impact than patients.Sexual well-being is important for overall health and quality of life. As patients with UC or CD reported a negative impact of UC or CD on sexual activity and/or relationship with their spouse/partner, the evaluation of sexual health should be included while assessing the impact of UC and CD.This study supports open discussions by HCPs regarding the impact of UC or CD on the sexual health of patients, diverse treatment strategies that may enhance the sexual well-being of patients, and the development of validated measures to evaluate the impact of UC and CD on sexual health. Ulcerative colitis (UC) and Crohn’s disease (CD) are long-term inflammatory bowel diseases (IBD). IBD symptoms affect the sexual health of the patients; however, the specific reasons have not been well studied. The CONFIDE surveys aimed to understand the impact of IBD symptoms on sexual health and identify gaps in the communication between health care professionals (HCPs) and patients with moderate-to-severe UC or CD in the United States (US) and Europe. This study shows that one of the main reasons for decreased sexual activity among patients with UC or CD in the past three months was bowel urgency-related accidents (can’t make it to the bathroom in time) in both the US and Europe. Overall, both male and female patients have reported decreased sexual activity. Also, both patients and HCPs reported a considerable impact of UC or CD on sex life/sexual intimacy, with HCPs reporting an even greater observed impact than patients. Sexual well-being is important for overall health and quality of life. As patients with UC or CD reported a negative impact of UC or CD on sexual activity and/or relationship with their spouse/partner, the evaluation of sexual health should be included while assessing the impact of UC and CD. This study supports open discussions by HCPs regarding the impact of UC or CD on the sexual health of patients, diverse treatment strategies that may enhance the sexual well-being of patients, and the development of validated measures to evaluate the impact of UC and CD on sexual health.