Agreement on Symptoms between Children with Ulcerative Colitis and Their Caregivers: Towards Developing the TUMMY-UC

Liron Marcovitch, Gili Focht, Anat Horesh, Adi Shosberger, Jeffrey Hyams, Athos Bousvaros, Amy E. Hale, Robert Baldassano, Anthony Otley, David R. Mack, Michael D. Kappelman, Anne M. Griffiths, Dan Turner*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

3 Scopus citations


As part of the development of the TUMMY-UC, a patient-reported outcome (PRO) measure for pediatric ulcerative colitis (UC), we aimed to explore agreement on UC symptoms between children and their caregivers. We conducted 44 interviews with children ages 8-12 years, who completed the PRO version of the TUMMY-UC, and their caregivers, who completed the observer-reported outcome (obsRO) version. There was excellent agreement between the total TUMMY-UC PRO and obsRO scores (intra-class correlation coefficient = 0.92 [95% confidence interval 0.74-0.98]). The obsRO scores were always within the same disease-activity category as the corresponding PRO score (ie, remission, mild and moderate-severe disease). There was a strong correlation of the TUMMY-UC PRO and obsRO scores with physician global assessment of disease activity (r = 0.94 and r = 0.90, respectively, P < 0.001) and the pediatric UC activity index (r = 0.95 and r = 0.96; P < 0.001). These data support conceptual equivalence between the PRO and obsRO TUMMY-UC versions, and provide support for their incorporation into one score.

Original languageAmerican English
Pages (from-to)E35-E38
JournalJournal of Pediatric Gastroenterology and Nutrition
Issue number2
StatePublished - 1 Aug 2021
Externally publishedYes

Bibliographical note

Publisher Copyright:
© 2021 Lippincott Williams and Wilkins. All rights reserved.


  • conceptual equivalence
  • inflammatory bowel disease
  • observer-reported outcome
  • patient-reported outcome
  • ulcerative colitis


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