The Real-World Global Use of Patient-Reported Outcomes for the Care of Patients with Inflammatory Bowel Disease

Jamie M. Horrigan, Edouard Louis, Antonino Spinelli, Simon Travis, Bjorn Moum, Jessica Salwen-Deremer, Jonas Halfvarson, Remo Panaccione, Marla C. Dubinsky, Pia Munkholm, Corey A. Siegel

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


Background: Many patient-reported outcomes (PROs) have been developed for inflammatory bowel disease (IBD) without recommendations for clinical use. PROs differ from physician-reported disease activity indices; they assess patients' perceptions of their symptoms, functional status, mental health, and quality of life, among other areas. We sought to investigate the current global use and barriers to using PROs in clinical practice for IBD. Methods: A cross-sectional survey was performed. An electronic questionnaire was sent to an international group of providers who care for patients with IBD. Results: There were 194 respondents, including adult/pediatric gastroenterologists, advanced practice providers, and colorectal surgeons from 5 continents. The majority (80%) use PROs in clinical practice, 65% frequently found value in routine use, and 50% frequently found PROs influenced management. Thirty-one different PROs for IBD were reportedly used. Barriers included not being familiar with PROs, not knowing how to incorporate PRO results into clinical practice, lack of electronic medical record integration, and time constraints. Most (91%) agreed it would be beneficial to have an accepted set of consistently used PROs. The majority (60%) thought that there should be some cultural differences in PROs used globally but that PROs for IBD should be consistent around the world. Conclusions: PROs are used frequently in clinical practice with wide variation in which are used and how they influence management. Education about PROs and how to use and interpret an accepted set of PROs would decrease barriers for use and allow for global harmonization.

Original languageEnglish
Article numberotad006
JournalCrohn's and Colitis 360
Issue number2
StatePublished - 1 Apr 2023


  • Crohn's disease
  • inflammatory bowel disease (IBD)
  • patient-centered care
  • patient-reported outcomes (PROs)
  • ulcerative colitis


Dive into the research topics of 'The Real-World Global Use of Patient-Reported Outcomes for the Care of Patients with Inflammatory Bowel Disease'. Together they form a unique fingerprint.

Cite this