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. 2024 Jul;69(7):2333-2344.
doi: 10.1007/s10620-024-08434-5. Epub 2024 May 3.

Patient and Health Care Professional Perceptions of the Experience and Impact of Symptoms of Moderate-to-Severe Crohn's Disease in US and Europe: Results from the Cross-Sectional CONFIDE Study

Stefan Schreiber  1 , Theresa Hunter Gibble  2 , Remo Panaccione  3 , David T Rubin  4 , Simon Travis  5 , Toshifumi Hibi  6 , Alison Potts Bleakman  2 , Tommaso Panni  2 , Angelo D Favia  2 , Cem Kayhan  2 , Christian Atkinson  7 , Sonal Saxena  2 , Marla C Dubinsky  8
Affiliations

Patient and Health Care Professional Perceptions of the Experience and Impact of Symptoms of Moderate-to-Severe Crohn's Disease in US and Europe: Results from the Cross-Sectional CONFIDE Study

Stefan Schreiber et al. Dig Dis Sci. 2024 Jul.

Abstract

Background: Crohn's disease (CD) significantly affects patients' health-related quality of life and well-being.

Aims: Communicating Needs and Features of IBD Experiences (CONFIDE) survey explores the experience and impact of moderate-to-severe CD symptoms on patients' lives and identifies communication gaps between patients and health care professionals (HCPs).

Methods: Online, quantitative, cross-sectional surveys of patients, and HCPs were conducted in the United States (US), Europe (France, Germany, Italy, Spain, United Kingdom), and Japan. Criteria based on previous treatment, steroid use, and/or hospitalization defined moderate-to-severe CD. US and Europe data are presented as descriptive statistics.

Results: Surveys were completed by 215 US and 547 European patients and 200 US and 503 European HCPs. In both patient groups, top three symptoms currently (past month) experienced were diarrhea, bowel urgency, and increased stool frequency, with more than one-third patients wearing diaper/pad/protection at least once a week in past 3 months due to fear of bowel urgency-related accidents. HCPs ranked diarrhea, blood in stool, and increased stool frequency as the most common symptoms. Although 34.0% US and 27.2% European HCPs ranked bowel urgency among the top five symptoms affecting patient lives, only 12.0% US and 10.9% European HCPs ranked it among top three most impactful symptoms on treatment decisions.

Conclusion: Bowel urgency is common and impactful among patients with CD in the US and Europe. Differences in patient and HCP perceptions of experiences and impacts of bowel urgency exist, with HCPs underestimating its burden. Proactive communication between HCPs and patients in clinical settings is crucial for improving health outcomes in patients with CD.

Keywords: Bowel urgency; Crohn’s disease; Health-related quality of life; Patient experience.

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Conflict of interest statement

DTR, Personal fees: Abbvie, Pfizer, Lilly, Janssen, Bristol-Myers Squibb; Grants and personal fees: Takeda; and Board of Trustees, Crohn's & Colitis Foundation (no compensation), CFO, Cornerstones Health (non-profit organization). TH, Personal fees: Abbvie GK, EA Pharma, Janssen Pharmaceutical K.K, JIMRO, Mitsubishi-Tanabe, Mochida Pharmaceutical, Pfizer Japan, Sandoz K.K, Takeda Pharmaceutical, Zeria Pharmaceutical, Celltrion Healthcare Japan, Eli Lilly Japan, Gilead Sciences, Miyarisan Pharmaceutical, Alfresa Pharma Corporation, Kyorin Pharmaceutical; Grants: JIMRO, Mochida Pharmaceutical, Zeria Pharmaceutical, Miyarisan Pharmaceutical, Alfresa Pharma Corporation, and Kyorin Pharmaceutical. SSc, Consultancy fees: AbbVie, Arena, Biogen, Bristol-Myers Squibb, Celgene, Celltrion, Falk, Fresenius, Gilead Sciences, IMAB, Janssen, Eli Lilly and Company, Hikma, MSD, Mylan, Pfizer Inc, Protagonist, Provention Bio, Takeda, Ventyx, and Theravance. MCD, 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; Stock options: Trellus Health Inc.; Research support: AbbVie, Janssen, LLC, Pfizer, and Prometheus Biosciences; and licensing fees: Takeda. RP, Consultancy/speaker fees and/or advisory board member: AbbVie, Amgen, Arena Pharmaceuticals, Alimentiv, AstraZeneca, Biogen, Boehringer Ingelheim, Bristol-Myers Squibb, Celgene, Eli Lilly and Company, Ferring, Fresenius Kabi, Genentech, Glaxo-Smith Kline, JAMP Bio, Gilead Sciences, Janssen, Merck, Mylan, Novartis, Oppilan Pharma, Organon, Pandion Pharma, Pfizer, Progenity, Protagonist Therapeutics, Roche, Sandoz, Shire, Sublimity Therapeutics, and Takeda, Ventyx; Consultancy fees: Abbivax, Abbott, Celltrion, Cosmos Pharmaceuticals, Eisai, Elan, Galapagos, JAMP Bio, Pendopharm, Satisfai Health, Theravance Biopharma, Trellus, Viatris, and UCB. ST, Grants: AbbVie, ECCO, Eli Lilly and Company, Helmsley Trust International, International Organization for the Study of Inflammatory Bowel Disease, Norman Collision Foundation, Pfizer, Takeda, UCB Pharma, UKIERI, Vifor Pharma; Honoraria: Ferring Pharmaceuticals, Takeda, Eli Lilly and Company, Bristol Myers Squibb, Janssen, Violicom; Travel grants: AbbVie, Eli Lilly and Company, Janssen, Pfizer, Takeda, Ferring Pharmaceuticals, Amgen, Biogen; Consultancy fees: AbbVie, Allergan, Amgen, Apexian, Bioclinica, Biogen, Bristol Myers Squibb, ChemoCentryx, Cosmo Pharmaceuticals, Endpoint Health, Eli Lilly and Company, Enterome, Equillium, Ferring Pharmaceuticals, Genentech/Roche, GlaxoSmithKline, Immunocore, Immunometabolism, Janssen, Merck, Merck Sharp & Dohme, Mestag Therapeutics, Novartis, Pfizer, Protagonist Therapeutics, Proximagen, Receptos, Roche, Sanofi, Satisfai Health, Sensyne Health, Sorriso Pharmaceuticals, Takeda, UCB Pharma, VHsquared, Vifor Pharma. CA, Employment: Adelphi Real World. APB, CK, THG, ADF, SSa, and TP, Employment and stockholder: Eli Lilly and Company.

Figures

Fig. 1
Fig. 1
Patient and HCP perceptions on CD symptoms. A The top three symptoms experienced by patients in the last month. Patients were asked which symptoms they currently suffer from (i.e., in the last month). Symptoms were selected from a list of 30 options. B The top five HCP-perceived most common symptoms reported by patients. HCPs were asked to rank the top five symptoms most reported by patients. C Patient-reported symptoms with the greatest impact (of symptoms ever experienced). Patients were asked to rank the five symptoms that have the greatest impact. D HCP-perceived symptoms with the greatest impact on patients. HCPs were asked to rank the top five symptoms with the greatest impact on patients. HCP health care professional, CD Crohn’s disease, US United States
Fig. 2
Fig. 2
Patient experience of bowel urgency. A Patients’ deferral time in last 3 days. Patients were asked how much urgency they had before bowel movements over the last 3 days. B Patients’ deferral time over the last 3 days in patients who experienced or did not experience bowel urgency in the past month among US and European patients. C Urgency NRS. Patients experiencing bowel urgency in the last month rated their urgency (sudden or immediate need) to have a bowel movement in the last 3 days (from 0 [no urgency] to 10 [worst possible urgency]). D Mean severity of urgency before bowel movement by deferral time over the last 3 days among patients experiencing bowel urgency in the past month. E Frequency of bowel urgency in the past 3 months among patients who reported ever experiencing bowel urgency. NRS Numeric Rating Scale, SD standard deviation, US United States
Fig. 3
Fig. 3
Impacts of bowel urgency on daily lives of patients and HCP–patient communication. A Frequency of diaper/pad/other protection use due to fear/anticipation of bowel urgency-related accidents. B The impact of bowel urgency experience on work/school (among patients who ever experienced bowel urgency). C Reasons for patients feeling uncomfortable reporting bowel urgency to HCPs. D HCP-reported symptoms proactively discussed at a routine appointment. E Reasons for HCPs not proactively discussing bowel urgency in routine appointments. F HCP-perceived most impactful symptoms on treatment decisions. HCPs were asked to choose from a list of possible symptoms the top three most impactful on treatment decisions. HCP health care professional, US United States
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