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

Research output: Contribution to journalArticlepeer-review


ABSTRACT: 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 languageEnglish
Pages (from-to)e35-e38
JournalJournal of Pediatric Gastroenterology and Nutrition
Issue number2
StatePublished - 1 Aug 2021
Externally publishedYes


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

All Science Journal Classification (ASJC) codes

  • Gastroenterology
  • Pediatrics, Perinatology, and Child Health


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