The communicating needs and features of IBD experiences (CONFIDE) study: patient and health care professional perceptions of symptoms of moderate-to-severe crohn’s disease in Germany

Introduction: Prior Communicating Needs and Features of IBD Experiences (CONFIDE) analyses have reported patient (pt) experience, impact of Crohn’s disease (CD), and communication gaps between pts and healthcare professionals (HCPs). We present the perspectives of pts with moderate-to-severe CD and of HCPs in Germany compared with overall EU data.

Methods: CONFIDE was a non-interventional, observational, cross-sectional study comprising online, quantitative surveys of HCPs and of pts with moderate-to-severe CD.

Results: Of EU participants, 108/547 pts and 101/503 HCPs were from Germany. German and EU pt demographics were similar, but moderate differences in current treatments were seen ([Table 1]). The most common symptoms in the last month shared by both German and EU pts were diarrhea, increased stool frequency and bowel urgency (BU) ([Fig. 1]). Of pts who had ever had BU, 74% of German and 70% of EU pts reported≥1 event/week. Only 18% of German and 15% of EU HCPs ranked BU as one of the 3 most frequent symptoms. Both German pts and HCPs ranked diarrhea the most impactful symptom and German HCPs ranked it the most impactful symptom on treatment decisions. BU was ranked the third most impactful symptom by German pts and second by EU pts while German and EU HCPs ranked it fourth and fifth, respectively; yet BU was not one of the five most impactful symptoms on treatment decisions in either Germany or the EU ([Fig. 2]). Deferral time≤5 minutes in the last 3 days was reported by 40% of German and 35% of EU pts. In the past 3 months, 38% of German and 39% of EU pts reported wearing diapers/pads/protection≥1/week due to fear/anticipation of BU. Increased stool frequency was the most common reason German pts declined work or school/social events/exercise ([Fig. 3]). Of German HCPs not routinely discussing BU with pts, the most common reason was expecting the pt to raise the issue (40%). Of pts who had ever experienced BU, 54% of German and 40% of EU pts were uncomfortable discussing BU with their HCP, most commonly due to embarrassment.

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Fig. 2  

Fig. 3  

Table 1 Patient demographics and disease characteristics

	Germany (N=108)	EU (N=547)
Mean age, years	39.1	38.0
Sex, n (%)
Male	68 (63.0)	303 (55.4)
Female	40 (37.0)	244 (44.6)
Time since diagnosis of CD (mean years)	10.0	9.2
Current treatments, n (%)
5-ASA	23 (21.3)	169 (30.9)
Corticosteroidsa	59 (54.6)	271 (49.5)
Immunomodulator	37 (34.3)	255 (46.6)
Anti-TNF biologic therapy	47 (43.5)	289 (52.8)
JAK inhibitor	5 (4.6)	47 (8.6)
Anti-IL-12/anti-IL-23 biologic therapy	11 (10.2)	69 (12.6)
Anti-integrin biologic therapy	41 (38.0)	154 (28.2)
Patients receiving any advanced therapy b , n (%)	77 (71.3)	347 (63.4)

^a Corticosteroids included methylprednisolone, budesonide, prednisolone, prednisone. ^b Advanced therapy defined as biologic therapy, biosimilar, or Janus kinase (JAK) inhibitor

Conclusion: Findings from German pts and HCPs enrolled in CONFIDE align with the overall EU group; diarrhea, increased stool frequency and BU were the most commonly reported and impactful symptoms for pts with moderate-to-severe CD. Abdominal pain, believed to be a key symptom by HCPs, was notably not ranked in the top five most impactful symptoms by pts.

Präsentiert in der Sitzung: CED kontrovers (TED)

Freitag, 19. September 2025, 10:30 – 12:00, Saal 1

Publication History

Article published online:
04 September 2025