Dig Liver Dis. 2022 Apr;54(4):483-489.doi: 10.1016/j.dld.2021.09.005. Epub 2021 Sep 26.

Laetitia Ricci ¹, Yannick Toussaint ², Justine Becker ³, Hiba Najjar ⁴, Alix Renier ⁵, Myriam Choukour ⁶, Anne Buisson ⁷, Corinne Devos ⁷, Jonathan Epstein ⁸, Laurent Peyrin Biroulet ⁹, Francis Guillemin ¹⁰

Author information

¹CHRU-Nancy, INSERM, Université de Lorraine, CIC 1433 Clinical Epidemiology, F-54000 Nancy, France. Electronic address: l.ricci@chru-nancy.fr.

²Laboratoire lorrain de recherche en informatique et ses applications, Université de Lorraine, Nancy, France. Electronic address: yannick.toussaint@loria.fr.

³Ecole des mines de Nancy, Université de Lorraine, Nancy, France. Electronic address: justine.becker5@etu.univ-lorraine.fr.

⁴Ecole des mines de Nancy, Université de Lorraine, Nancy, France. Electronic address: hiba.najjar@etu.mines-nancy.univ-lorraine.fr.

⁵Ecole des mines de Nancy, Université de Lorraine, Nancy, France. Electronic address: alix.renier@etu.mines-nancy.univ-lorraine.fr.

⁶INSERM, U1256 NGERE and gastroenterology Department, CHRU-Nancy, Université de Lorraine, Nancy, France. Electronic address: m.choukour@chru-nancy.fr.

⁷afa Crohn RCH, France.

⁸CHRU-Nancy, INSERM, Université de Lorraine, CIC 1433 Clinical Epidemiology, F-54000 Nancy, France; Université de Lorraine, APEMAC, F-54000 Nancy, France. Electronic address: j.epstein@chru-nancy.fr.

⁹INSERM, U1256 NGERE and gastroenterology Department, CHRU-Nancy, Université de Lorraine, Nancy, France.

¹⁰CHRU-Nancy, INSERM, Université de Lorraine, CIC 1433 Clinical Epidemiology, F-54000 Nancy, France; Université de Lorraine, APEMAC, F-54000 Nancy, France. Electronic address: francis.guillemin@chru-nancy.fr.

Abstract

Background: Messages from an Internet forum are raw material that emerges in a natural setting (i.e., non-induced by a research situation).

Aims: The FLARE-IBD project aimed at using an innovative approach consisting of collecting messages posted by patients in an Internet forum and conducting a machine-learning study (data analysis/language processing) for developing a patient-reported outcome measuring flare in inflammatory bowel disease meeting international requirements.

Methods: We used web-based and machine learning approaches, in the following steps. 1) Web-scraping to collect all available posts in an Internet forum (23 656 messages) and extracting metadata from the forum. 2) Twenty patients were randomly assigned 50 extracted messages; participants indicated whether the message corresponded or not to the flare phenomenon (labeling). If yes, participants were asked to identify excerpts from the text they considered significant flare markers (annotation). 3) The set of annotated messages underwent a vocabulary analysis.

Results: The phenomenon of flare was circumscribed with the identification of 20 surrogate flare markers classified into five dimensions with their frequency within extracted labeled data: impact on life, symptoms, extra-intestinal manifestations, drugs and environmental factors. Web-based and machine-learning approaches met international recommendations to inform the content and structure for the development of patient-reported outcomes.