Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: United States and European Patient Perspectives on the Impact of Moderate to Severe Crohn’s Disease on Sexual Activity

Background: Crohn’s Disease (CD) symptoms impact several aspects of quality of life (QoL), including sexual health. Patients with CD may be embarrassed to discuss sexual health, and health care professionals (HCPs) may fail to query the issue with patients. In previous analyses from the Communicating Needs and Features of IBD Experiences (CONFIDE) study, most patients with moderate to severe ulcerative colitis (UC) reported avoiding or decreasing sexual activity due to UC, with bowel urgency (BU) and BU-related accidents being among the most common reasons. Data from the CONFIDE study were used to explore the impact of CD symptoms on sexual activity. Methods: Online, quantitative, cross-sectional surveys exploring the experiences and impacts of symptoms on patients with CD or UC were conducted in the US, Europe (France, Germany, Italy, Spain, and UK), and Japan. Data presented here are from the US and Europe. Moderate-to-severe CD was defined using criteria based on previous treatment, steroid use, and/or hospitalization. Patients were asked whether they avoided or decreased sexual activity due to CD; if yes, the underlying reasons were explored. To include all patients regardless of their partner status, sexual activity was not limited to intercourse and included activities such as masturbation. The analyses were descriptive in nature. Results: Overall, 215 US (male [M]=54.9%, mean age 40.9 years) and 547 European patients (M=55.4%, mean age 38.0 years) completed the survey. In addition, 58.1% US and 63.4% European patients were receiving advanced therapies (biologic/novel oral), and 23.7% US and 16.1% European patients experienced fistula-related symptoms around the anus/rectum. Overall, 68.8% US (M=69.5%, female [F]=68%) and 55.8% European patients (M=55.1%, F=56.6%) reported avoiding or decreasing sexual activity due to CD in past 3 months. Among these, the top three reasons for avoidance of sexual activity were fear of BU-related accidents (41.2%), fear of fecal seepage (39.2%), and abdominal pain (38.5%) in US and fear of BU-related accidents (30.5%), BU itself (29.8%), fatigue (29.5%), and abdominal pain (29.5%) in Europe. In the US, greater proportion of male patients reported fear of BU-related accidents (M=46.3%, F=34.8%), fear of fecal seepage (M=41.5%, F=36.4%), fatigue (M=40.2%, F=34.8%), BU (M=31.7%, F=22.7%), feeling physically unattractive (M=25.6%, F=19.7%), pain in genital area during sexual activity (M=23.2%, F=18.2%), self-conscious about not feeling clean (M=19.5%, F=12.1%), and difficulty reaching orgasm (M=13.4%, F=7.6%). In Europe, greater proportion of male patients reported fear of BU-related accidents (M=34.1%, F=26.1%), increased stool frequency (M=31.7%, F=18.8%), blood in stool (M=29.9%, F=8.7%), and perianal pain (M=28.7%, F=15.9%). However, greater proportion of female patients reported worsening of abdominal pain during intercourse (M=24.4%, F=30.3%) in the US and reduced sexual desire (M=24.6%, F=29.7%), feeling physically unattractive (M=15.6%, F=29.7%), and self-conscious about not feeling clean (M=16.8%, F=22.5%) in Europe. Conclusions: Similar to patients with UC, in US and Europe, most patients with moderate to severe CD reported avoiding or decreasing sexual activity. Fear of BU-related accidents was the top reason for avoidance of sexual activity in the US and Europe. Sexual well-being is an important aspect of overall QoL and needs to be addressed for patients with CD in routine clinical practice.