Introduction
In contrast to ulcerative colitis (UC), the impact of bowel urgency (BU) in patients with moderate-to-severe Crohn’s disease (CD) is unclear. The Communicating Needs and Features of IBD Experiences (CONFIDE) survey aims to understand the experience and impact of symptoms on lives of patients with UC or CD worldwide (United States [US], Europe [EU], and Japan). This survey also explores the communication gaps between healthcare professionals (HCPs) and patients. Previously reported CONFIDE data suggested that BU was the second most reported symptom among US and EU5 (France, Germany, Italy, Spain, and UK) patients with moderate-to-severe UC.1 Persistent BU was reported in 46% US and 28% EU5 patients receiving advanced therapies for UC and 45% US and 37% EU5 patients reported wearing diapers/pads/protection at least once every week.1 Here, we present patient and HCP perspectives on the experiences and impact of CD-related symptoms.
Aims & Methods
Online, quantitative, cross-sectional surveys were conducted separately among HCPs and patients with CD from US and EU5 between May and October 2021. Moderate-to-severe CD was defined using criteria based on previous treatment, steroid use, and/or hospitalization. Data are presented as descriptive statistics.
Results
Surveys were completed by 215 US (male [M]=55%, mean age 41 years) and 547 EU5 (M=55%, mean age 38 years) patients. Of these, 58% US and 63% EU5 patients were receiving advanced therapies (biologic/novel oral) and 66% and 63% were receiving steroids at the time of survey completion, respectively. Most patients in the US (61%) and EU5 (62%) reported moderate CD, followed by severe (25% and 10%), and mild CD (14% and 28%).
In both US and EU5 populations, top three symptoms currently (past month) experienced by patients were diarrhoea (US: 55%, EU5: 55%), BU (US: 42%, EU5: 38%), and increased stool frequency (US: 40%, EU5: 37%). Among the patients receiving advanced therapies (US: 58%, EU5: 63%), 46% US and 39% EU5 patients experienced BU and 27% US and 19% EU5 patients reported fistula-related symptoms around the anus/rectum. Of the patients who had experienced BU, only 40% US and 27% EU5 patients were completely comfortable discussing BU with their HCPs and only 27% US and 23% EU5 patients felt comfortable discussing BU-related accidents. Embarrassment was the most common reason for discomfort associated with discussing BU (US: 73%, EU5: 64%) and BU-related accidents (US: 72%, EU5: 66%) with HCPs.
A total of 200 US (M=78%) and 503 EU5 (M=71%) HCPs completed the surveys, of which 92% were gastroenterologists or specialists in internal medicine and 7% were non-physicians. According to HCPs, the top three patient-reported symptoms were diarrhoea (US: 67%, EU5: 66%), blood in stool (US: 44%, EU5: 24%), and increased stool frequency (US: 32%, EU5: 28%). BU was reported among the top three symptoms only by 19% US and 16% EU5 HCPs. Many HCPs (US: 34%, EU5: 40%) reported not proactively discussing BU, with the most common reason being that they “expect the patient to bring this up if this is an issue” (US: 34%, EU5: 42.0%).
Conclusion
Similar to the findings in UC patients1, bowel urgency was the second most reported symptom among patients with CD, but not among the HCP-perceived top three symptoms. A large proportion of patients with moderate-to-severe CD receiving advanced therapies continued to experience bowel urgency. These results indicate a communication gap between HCPs and patients with CD, highlighting the underappreciation of the impacts of bowel urgency on patients’ daily lives.
References
- Rubin, D. T. et al. (2021) P028 Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: Patient and Healthcare Professional Perspectives on Experience of Ulcerative Colitis Symptoms. The American Journal of Gastroenterology, 116:p S7. https://doi.org/10.14309/01.ajg.0000798712.28363.8b
Disclosure
- Simon Travis, Grants: AbbVie, ECCO, Eli Lilly and Company, Helmsley Trust International, Organization for the Study of Inflammatory Bowel Disease, Norman Collision Foundation, Pfizer, Takeda, UCB Pharma, UKIERI, Vifor Pharma; Consultancy fees: AbbVie, Allergan, Amgen, Apexian, Asahi Kasei Pharma, Bioclinica, Biogen, Boehringer Ingelheim, Bristol Myers Squibb, Celgene, ChemoCentryx, Cosmo Pharmaceuticals, Eli Lilly and Company, Enterome, Equillium, Ferring Pharmaceuticals, Genentech/Roche, GlaxoSmithKline, Giuliani SpA, Immunocore, Immunometabolism, Janssen, Merck, Merck Sharp & Dohme, Mestag Therapeutics, Neovacs, Novartis, Novo Nordisk, NPS Pharmaceuticals/Nycomed, Pfizer, Protagonist Therapeutics, Proximagen, Receptos, Roche, Satisfai Health, Sensyne Health, Shire, Sigmoid Pharma, Sorriso Pharmaceuticals, Takeda, UCB Pharma, VHsquared, Vifor Pharma, and Zeria Pharmaceutical.
- Marla C. Dubinsky, Consultancy fees: AbbVie, Arena Pharmaceuticals, Boehringer Ingelheim International GmbH, Bristol Myers Squibb, Celgene Corporation, Eli Lilly and Company, F. Hoffman-La Roche Ltd, Genentech Inc., Gilead Sciences, Janssen, LLC, Pfizer, Prometheus Biosciences, Takeda Pharmaceuticals USA, Inc., and UCB; Stockholder: Trellus Health Inc.; Research support: AbbVie, Janssen, LLC, Pfizer, and Prometheus Biosciences; Licensing fees: Takeda.
- Toshifumi Hibi, Consultancy fees/grant/research support/speaker: AbbVie GK and Mitsubishi-Tanabe Pharma; Grant/Lecture/speaker fees: JIMRO, Mochida Pharmaceutical, Takeda Pharmaceutical, and Zeria Pharmaceutical; Consultancy/ Lecture/speaker fees: Pfizer, EA Pharma; Grants: Kyorin, Otuska Holdings; Consultancy fees: Bristol-Myers Squibb, Eli Lilly and company, Gilead Sciences, Janssen, Nichi-Iko Pharmaceutical; Lecture/speaker fees: Sondoz K.K.
- David T. Rubin, Consultancy fees: Abbvie, Alimentiv Inc., Altrubio, Arena Pharmaceuticals, Aslan Pharmaceuticals, Athos Therapeutics, Bellatrix Pharmaceuticals, Boehringer Ingelheim Ltd., Bristol-Myers Squibb, Celgene Corp/Syneos, ClostraBio, Connect BioPharma, EcoR1, Genentech/Roche, Gilead Sciences, Ironwood Pharmaceuticals, Iterative Scopes, Janssen Pharmaceuticals, Kaleido Biosciences, Eli Lilly and company, Materia Prima, Pfizer, Prometheus Biosciences, Reistone, Seres Therapeutics, Takeda, Target RWE, Techlab Inc., and Trellus Health; Stockholder: Altrubio, Alike, and Iterative Scopes.
- Remo Panaccione, Consultancy/speaker fees and/or advisory board member: AbbVie, Amgen, Arena Pharmaceuticals, Bristol-Myers Squibb, Celgene, Eli Lilly and Company, Ferring, Fresenius Kabi, Gilead Sciences, Janssen, Merck, Organon, Pfizer, Roche, Sandoz, Shire, and Takeda; Consultancy fees and/or advisory board member: Alimentiv, AstraZeneca, Biogen, Boehringer Ingelheim, Genentech, Glaxo-Smith Kline, JAMP Bio, Mylan, Novartis, Oppilan Pharma, Pandion Pharma, Progenity, Protagonist Therapeutics, Sublimity Therapeutics, Ventyx; Consultancy fees: Abbivax, Abbott, Celltrion, Cosmos Pharmaceuticals, Eisai, Elan, Galapagos, JAMP Bio, Pendopharm, Satisfai Health, Theravance Biopharma, Trellus, Viatris, and UCB.
- Stefan Schreiber, Consultancy fees: AbbVie, Arena, Biogen, Bristol-Myers Squibb, Celgene, Celltrion, Falk, Fresenius, Gilead Sciences, IMAB, Janssen, Eli Lilly and Company, MSD, Mylan, Pfizer Inc, Protagonist, Provention Bio, Takeda, and Theravance
- Christian Atkinson, Employee: Adelphi Real World
- Theresa H. Gibble, Cem Kayhan, Alison P. Bleakman, Tommaso Panni, and Angelo Favia are employees and stockholders of Eli Lilly and Company.