TY - JOUR
T1 - Agreement on Symptoms Between Children With Ulcerative Colitis and Their Caregivers
T2 - Towards Developing the TUMMY-UC
AU - Marcovitch, Liron
AU - Focht, Gili
AU - Horesh, Anat
AU - Shosberger, Adi
AU - Hyams, Jeffrey
AU - Bousvaros, Athos
AU - Hale, Amy E.
AU - Baldassano, Robert
AU - Otley, Anthony
AU - Mack, David R.
AU - Kappelman, Michael D.
AU - Griffiths, Anne M.
AU - Turner, Dan
N1 - Publisher Copyright: Copyright © 2021 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.
PY - 2021/8/1
Y1 - 2021/8/1
N2 - 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.
AB - 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.
KW - conceptual equivalence
KW - inflammatory bowel disease
KW - observer-reported outcome
KW - patient-reported outcome
KW - ulcerative colitis
UR - http://www.scopus.com/inward/record.url?scp=85114522893&partnerID=8YFLogxK
U2 - https://doi.org/10.1097/MPG.0000000000003120
DO - https://doi.org/10.1097/MPG.0000000000003120
M3 - Article
C2 - 33720091
SN - 0277-2116
VL - 73
SP - e35-e38
JO - Journal of Pediatric Gastroenterology and Nutrition
JF - Journal of Pediatric Gastroenterology and Nutrition
IS - 2
ER -