Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Multicenter Study
. 2025 Sep;13(7):1226-1238.
doi: 10.1002/ueg2.70091. Epub 2025 Aug 19.

Patient and First-Degree Relatives Perceptions About Prediction and Prevention of Inflammatory Bowel Disease-A Multinational Survey

Ana Catarina Bravo  1 , Sara Godt Christensen  2 , Mette Julsgaard  2   3   4 , Iago Rodriguez-Lago  5   6 , Lucía Exposito  7 , Daniel Ginard  8 , Pascal Juillerat  9 , Heidi Gram Sørensen  10 , Gionata Fiorino  11 , Anthony Buisson  12 , Nickolas Stemmer  13 , Natalia Queiroz  14 , Adriana Ribas  15 , Vivíana Parra Izquierdo  16   17 , Corey A Siegel  18 , Kenneth Croitoiru  19   20 , Elizabeth A Spencer  21 , Inga Peter  22 , Alan Moss  23 , Luisa Avedano  24 , Salvo Leone  24 , Jean-Frederic Colombel  25 , Manasi Agrawal  4   25   26 , Ryan Ungaro  25 , Catarina Fidalgo  1   27 , Bárbara Morão  1 , Joana Torres  1   27   28
Affiliations
Multicenter Study

Patient and First-Degree Relatives Perceptions About Prediction and Prevention of Inflammatory Bowel Disease-A Multinational Survey

Ana Catarina Bravo et al. United European Gastroenterol J. 2025 Sep.

Abstract

Background and objective: While significant advances have been made in identifying biomarkers for predicting inflammatory bowel disease (IBD) onset, little is known about the willingness of at-risk individuals to undergo predictive testing and preventive interventions. This study aimed to assess acceptance of predictive tests and preventive interventions among individuals at risk of inflammatory bowel disease and identify factors influencing their decisions.

Methods: An anonymized electronic survey was distributed to parents of children at risk of inflammatory bowel disease and first-degree relatives (FDRs) of IBD patients via clinicians and patient associations. The survey assessed acceptance of predictive tests, preventive interventions, and influencing variables.

Results: A total of 1327 participants (74% women, mean age 42 ± 18 years) from 66 countries responded to the survey. Of these, 88% were parents of children at risk, and 12% were FDRs. Eighty-five percent were willing to embark in predictive testing, preferring blood analysis (91%), stool tests (89%), saliva tests (78%) or intestinal ultrasound (67%). Lower perceived IBD impact and higher disease knowledge reduced the odds of test acceptance. Preventive interventions were accepted by 98%, with dietary changes (85%), physical exercise (81%), and probiotics (71%) being the preferred. Acceptance of oral (38%) or intravenous/subcutaneous immunosuppressive treatments (32%) depended on their efficacy, difficulty, and risks.

Conclusion: Most respondents preferred minimally invasive predictive tests and non-pharmacological preventive measures, although more than one-third would be willing to undergo immunosuppressive medications to prevent disease onset. Disease knowledge and quality-of-life perceptions influenced preferences. This data provides important information for the development of IBD prediction and prevention strategies.

Keywords: Crohn's disease; first‐degree relatives; inflammatory bowel disease; prediction; prevention; relatives; risk; survey; ulcerative colitis.

PubMed Disclaimer

Conflict of interest statement

M.J. has received research grants for other investigator‐driven studies from Takeda, and the NOVO Nordisk Foundation (grant no. NNF23OC0081717); consulting/advisory board fees from Ferring, Takeda, AbbVie, PharmaCosmos and Tillots Pharma; speaker’s fees from Tillotts Pharma, MSD, Ferring, and Takeda. I.R.‐L. has received consulting/advisory board fees from Adacyte, Pfizer, Abbvie, Janssen, Celltrion, and Alfasigma, and research support from AbbVie. P.J. has served as speaker, consultant, and advisory member for AbbVie, Amgen, Aspen Pharmacare, Bristol Myers Squibb, CLS Vifor Pharma, Eli Lilly, Ferring Pharmaceuticals, Gilead Sciences, Johnson & Johnson, Merck Sharp & Dohme, Pfizer, Pierre Fabre, Sandoz, Takeda, Tillotts Pharma AG, UCB Pharma. C.S. is the co‐founder of MiTest Health LLC (software company), licensed to Takeda. J.T. has received consulting/advisory board fees from Abbvie, Pfizer, Janssen, Tillots, Sandoz, and Lilly; grant support from Janssen and Abbvie. The other authors have no conflicts of interest to declare. INTERCEPT project is funded by the European Union, the private members, and those contributing partners of the IHI JU. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the aforementioned parties. Neither of the aforementioned parties can be held responsible for them.

Figures

FIGURE 1
FIGURE 1
Level of acceptance of a predictive test (a) and acceptance of each type of predictive test (b), stratified by two groups—parents of children at risk of IBD and first‐degree relatives of individuals with IBD.
FIGURE 2
FIGURE 2
Advantages (a) and disadvantages (b) of carrying out a predictive test, stratified by two groups—parents of children at risk of IBD and first‐degree relatives of individuals with IBD.
FIGURE 3
FIGURE 3
Level of acceptance of preventive interventions (a) and acceptance of each type of preventive measure (b), stratified by two groups—parents of children at risk of IBD, and first‐degree relatives of individuals with IBD.
FIGURE 4
FIGURE 4
Percentage of participants reporting different categories of risk of IBD for which they would accept each type of preventive intervention, stratified by two groups—parents of children at risk of IBD and first‐degree relatives of individuals with IBD (n = 253).
See this image and copyright information in PMC

References

    1. de Souza H. and Fiocchi C., “Immunopathogenesis of IBD: Current State of the Art,” Nature Reviews Gastroenterology & Hepatology 13, no. 1 (January 2016): 13–27, 10.1038/nrgastro.2015.186. - DOI - PubMed
    1. Blonski W., Buchner A. M., and Lichtenstein G. R., “Inflammatory Bowel Disease Therapy: Current State‐of‐the‐Art,” Current Opinion in Gastroenterology 1 (June 2011): 1, 10.1097/mog.0b013e328347aef3. - DOI - PubMed
    1. van Dongen H., van Aken J., Lard L. R., et al., “Efficacy of Methotrexate Treatment in Patients With Probable Rheumatoid Arthritis: A Double‐Blind, Randomized, Placebo‐Controlled Trial,” Arthritis & Rheumatism 56, no. 5 (May 2007): 1424–1432, 10.1002/art.22525. - DOI - PubMed
    1. Machold K. P., Landewé R., Smolen J. S., et al., “The Stop Arthritis Very Early (SAVE) Trial, an International Multicentre, Randomised, Double‐Blind, Placebo‐Controlled Trial on Glucocorticoids in Very Early Arthritis,” Annals of the Rheumatic Diseases 69, no. 3 (March 2010): 495–502, 10.1136/ard.2009.122473. - DOI - PubMed
    1. Verstappen S. M. M., McCoy M. J., Roberts C., Dale N. E., Hassell A. B., and Symmons D. P. M., “Beneficial Effects of a 3‐Week Course of Intramuscular Glucocorticoid Injections in Patients With Very Early Inflammatory Polyarthritis: Results of the STIVEA Trial,” Annals of the Rheumatic Diseases 69, no. 3 (March 2010): 503–509, 10.1136/ard.2009.119149. - DOI - PubMed

Publication types

MeSH terms

LinkOut - more resources