UNITED STATES AND EUROPEAN PATIENT PERSPECTIVES ON THE IMPACT OF MODERATE-TO-SEVERE ULCERATIVE COLITIS ON SEXUAL ACTIVITY: COMMUNICATING NEEDS AND FEATURES OF IBD EXPERIENCES (CONFIDE) SURVEY

Background: Patients with inflammatory bowel disease (IBD) often modify their diet in attempt to manage their disease and symptoms. In some cases, dietary changes involve excessive restriction, which may place patients at risk for adverse consequences. Avoidant Restrictive Food Intake Disorder (ARFID) is a non-body image based eating disorder that involves restrictive eating and has been suggested to disproportionately affect patients with IBD. However, true rates of ARFID are not yet known, as no study to date has applied ARFID diagnostic criteria. The aims of the current study were (1) to identify the prevalence of IBD patients screening positive for ARFID and (2) explore associations between psychosocial and disease-related factors with ARFID symptoms.
Methods: Adult patients with confirmed IBD were invited to complete electronic questionnaires at two academic medical centers. The ARFID subscale of the Pica, ARFID, and rumination disorder questionnaire (PARDI-AR-Q) was used to categorize patients as screening positive for ARFID. The nine-item ARFID Screen (NIAS) was used to measure ARFID symptom severity. Additional survey items included demographic and disease information, the Visceral Sensitivity Index (VSI), Patient Health Questionnaire-4 (PHQ-4) for anxiety and depression, and the NIH-PROMIS Global Health Questionnaire for mental and physical health. The Harvey Bradshaw Index (HBI) and Patient-Reported Outcome (PRO-2) were used to characterize disease activity in Crohn’s disease (CD) and ulcerative colitis (UC), respectively. Descriptive statistics and Pearson’s correlations were used to analyze sample data.
Results: A total of 258 patients (55.8% female, mean age 47.6 (17)) responded to the survey, of which 136 (53%) had CD and 122 (47%) had UC. 40% of the sample had active disease. ARFID scores are presented in table 1. 17% of the sample screened positive for ARFID with significantly more patients with CD screening positive compared to UC (23.4% vs. 11.1% respectively, p = .012). Patients with active disease were more likely to screen positive for ARFID compared to inactive disease (25.3% vs. 12.4% respectively, p = .011). Higher ARFID scores based on NIAS were associated with higher scores on PHQ-4 anxiety (r = .13, p < .05), VSI (r = .47, p < .001), and PROMIS mental and physical health (r = .30, p < .001 and r = .30, p < .001 respectively).
Conclusions: 17% of tertiary care IBD patients in this multisite study screened positive for ARFID based on a validated screening questionnaire that corresponds with DSM-5 criteria. Disease type and severity placed patients at higher risk for ARFID. Greater ARFID symptomatology was associated with more GI-specific anxiety and quality of life impairment. These findings highlight the need for adequate screening, education, and treatment to prevent and manage ARFID in patients with IBD.

Background:
Patients with ulcerative colitis (UC) report that UC negatively affects their quality of life (QoL), including sexual functioning, satisfaction, and drive.^1,2 These effects are rarely discussed with or by gastroenterologists in clinical practice. The CONFIDE study aims to elucidate the impact of symptoms on the lives of patients with moderate-to-severe UC in the United States (US), Europe (EU5; France, Germany, Italy, Spain, and UK), and Japan. Data presented here are from the US and EU5.
Methods:
Online, quantitative, cross-sectional surveys were conducted (July–September 2021). Criteria based on previous treatment, steroid use, and/or hospitalization were used to define moderate-to-severe UC. Data collected included patient perspectives on the impact of UC on sexual activity. Sexual activity was not limited to intercourse and included activities such as masturbation.
Results:
Surveys were completed by 200 US patients (male [M]=62%, mean age 40 years) and 556 EU5 patients (M=57%, mean age 39 years). Of these, 77% US and 54% EU5 patients were receiving advanced therapy (biologic/novel oral) and 52% and 73% were receiving steroids at the time of survey completion, respectively. Overall, 63% US patients (M=55%, female [F]=77%) and 53% EU5 patients (M=47%, F=60%) reported avoiding or decreasing sexual activity due to UC in the 3 months prior to the survey (Figure 1a). Among these patients (US: N=126; EU5: N=292), most frequently reported reasons for avoidance of sexual activity were bowel urgency (BU; 41%), decreased sexual desire (37%), and fear of BU-related accidents (34%) in the US and fear of faecal seepage (37%), fear of BU-related accidents (36%), and BU itself (31%) in EU5 (Figure 1b). Although reasons for avoiding sexual activity were broadly similar between sexes, higher percentage of male patients from both US and EU5 (US: M=33%, F=24%; EU5: M=42%, F=33%) reported fear of faecal seepage as a factor affecting sexual activity. Conversely, higher percentages of female patients reported perianal pain (M=13%, F=19%) and self-consciousness (M=13%, F=24%) as reasons for avoiding sexual activity in the US and decreased sexual desire (M=16%, F=26%), BU (M=26%, F=36%) and fatigue (M=14%, F=22%) in EU5 (Figure 2).
Conclusions:
In both US and EU5 populations, >50% patients with moderate-to-severe UC reported avoiding or decreasing sexual activity due to UC, with bowel urgency and bowel urgency-related accidents being among the top three reasons. In addition to other QoL parameters, impact of UC on patients’ sexual health needs to be assessed in routine clinical practice.
References:
¹Bulut AE, et al. Turk J Gastroenterol. 2019;30:33-39.
²Jedel S, et al. Inflamm Bowel Dis. 2015;21:923-38.