+1 Recommend
0 collections
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Agreement Level of Inflammatory Bowel Disease Symptom Reports between Children and Their Parents


      Read this article at

          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.



          Children with inflammatory bowel disease (IBD) frequently undergo clinical assessments, involving triadic communication between clinician, parent, and child. During such encounters parents are traditionally the main communicator of information on their child’s IBD, including subjective symptom reports. The level of agreement between children and their parents for IBD symptoms is poorly understood, and this study aimed to examine this factor.


          This was a cross-sectional study among children with IBD, and one parent. A validated paediatric IBD symptom report tool (IBDnow) enabled children and their parent to rate seven pain, well-being, and stool metrics, with dyads completing the tool concurrently. Results were assessed using: Individual agreement: proportion of identical symptom reports by each dyad (ideal score >0.7); Category agreement: percentage of identical reports for IBDnow metrics for the cohort; Inter-rater reliability: Gwet’s AC1 coefficient with higher scores indicating better reliability (maximum=1).


          Seventy-four parent/child dyads participated; child’s mean age 12.2 years (standard deviation [SD] 2.9, range 6-16), mean time since diagnosis 2.8 years (SD 3), 54% female, 73% had Crohn’s Disease. Mean individual agreement level was 0.6, with 27% of dyads agreeing on ≥6/7 IBDnow metrics. Category agreement was reported by 61% of dyads, 20% of parents overestimated, and 19% underestimated, their child’s symptoms. Inter-rater reliability ranged from fair to good.


          These results should improve clinician awareness of how IBD symptom reports from parents may introduce bias. Children should be considered the most important source of symptom reports, and tools such as IBDnow utilised to enhance communication.

          Related collections

          Most cited references29

          • Record: found
          • Abstract: found
          • Article: found
          Is Open Access

          A comparison of Cohen’s Kappa and Gwet’s AC1 when calculating inter-rater reliability coefficients: a study conducted with personality disorder samples

          Background Rater agreement is important in clinical research, and Cohen’s Kappa is a widely used method for assessing inter-rater reliability; however, there are well documented statistical problems associated with the measure. In order to assess its utility, we evaluated it against Gwet’s AC1 and compared the results. Methods This study was carried out across 67 patients (56% males) aged 18 to 67, with a mean SD of 44.13 ± 12.68 years. Nine raters (7 psychiatrists, a psychiatry resident and a social worker) participated as interviewers, either for the first or the second interviews, which were held 4 to 6 weeks apart. The interviews were held in order to establish a personality disorder (PD) diagnosis using DSM-IV criteria. Cohen’s Kappa and Gwet’s AC1 were used and the level of agreement between raters was assessed in terms of a simple categorical diagnosis (i.e., the presence or absence of a disorder). Data were also compared with a previous analysis in order to evaluate the effects of trait prevalence. Results Gwet’s AC1 was shown to have higher inter-rater reliability coefficients for all the PD criteria, ranging from .752 to 1.000, whereas Cohen’s Kappa ranged from 0 to 1.00. Cohen’s Kappa values were high and close to the percentage of agreement when the prevalence was high, whereas Gwet’s AC1 values appeared not to change much with a change in prevalence, but remained close to the percentage of agreement. For example a Schizoid sample revealed a mean Cohen’s Kappa of .726 and a Gwet’s AC1of .853 , which fell within the different level of agreement according to criteria developed by Landis and Koch, and Altman and Fleiss. Conclusions Based on the different formulae used to calculate the level of chance-corrected agreement, Gwet’s AC1 was shown to provide a more stable inter-rater reliability coefficient than Cohen’s Kappa. It was also found to be less affected by prevalence and marginal probability than that of Cohen’s Kappa, and therefore should be considered for use with inter-rater reliability analysis.
            • Record: found
            • Abstract: found
            • Article: not found

            Development, validation, and evaluation of a pediatric ulcerative colitis activity index: a prospective multicenter study.

            Colonoscopic appearance, the primary measure of disease activity in adult ulcerative colitis, is less acceptable to children. Our aim was to develop a noninvasive activity index of pediatric ulcerative colitis. Item selection was performed judgmentally using a Delphi group of 36 experts in pediatric inflammatory bowel disease. Item weighting was performed by regression modeling using a prospective cohort of 157 pediatric ulcerative colitis patients. Validation was assessed on a separate prospective cohort of 48 children with ulcerative colitis undergoing complete colonoscopy. Responsiveness was evaluated at a follow-up visit of 75 children using effect size statistics and diagnostic utility approaches. A list of 41 items was generated and reduced to 11 by rank order. Two physicians completed the Pediatric Ulcerative Colitis Activity Index (PUCAI) on each of the patients in the weighting cohort. Six clinical items were significant in the regression analysis; the laboratory items and an endoscopic appearance item did not improve the PUCAI performance. In the validation cohort, the PUCAI was highly correlated with the Physician's Global Assessment (r = 0.91, P < .001), Mayo score (r = 0.95, P < .001), and colonoscopic appearance (r = 0.77, P < .001). Correlations were higher than 2 noninvasive adult indices calculated concurrently. Interobserver and test-retest reliability were excellent (intraclass correlation coefficient = 0.95; 95% CI: 0.93-0.97). Cut-off points were established using receiver operator characteristic curves on the full cohort. Excellent responsiveness was found at repeated visits (effect size = 1.9, area under the receiver operator characteristic curve = 0.97). The rigorously developed PUCAI is a noninvasive, valid, highly reliable, and responsive index with which to assess disease activity in pediatric ulcerative colitis.
              • Record: found
              • Abstract: found
              • Article: not found

              Development and validation of a pediatric Crohn's disease activity index.

              Clinical and laboratory observations of 133 children and adolescents with Crohn's disease were used to validate an index of severity of illness previously developed by a group of senior pediatric gastroenterologists at a research forum in April 1990. This pediatric Crohn's disease activity index (PCDAI) included (a) subjective reporting of the degree of abdominal pain, stool pattern, and general well-being; (b) presence of extraintestinal manifestations, such as fever, arthritis, rash, and uveitis; (c) physical examination findings; (d) weight and height; and (e) hematocrit, erythrocyte sedimentation rate, and serum albumin. Independent evaluation of each patient by two physician-observers was performed at the time of a visit, and each physician completed a PCDAI index and a modified Harvey-Bradshaw index and made a "global assessment" of disease activity as none, mild, moderate, or severe. Excellent interobserver agreement was noted for the PCDAI, modified Harvey-Bradshaw index, and global assessment. There was a strong correlation between global assessment and both the PCDAI or modified Harvey-Bradshaw. Increasing PCDAI scores were noted with increasing disease severity, and significant differences in scores were noted between the severity groups. We propose that the PCDAI could be used in multicenter projects to facilitate patient stratification by disease severity and that longitudinal PCDAI scores might provide a numerical measure of response to therapeutic regimens.

                Author and article information

                Pediatr Gastroenterol Hepatol Nutr
                Pediatr Gastroenterol Hepatol Nutr
                Pediatric Gastroenterology, Hepatology & Nutrition
                The Korean Society of Pediatric Gastroenterology, Hepatology and Nutrition
                March 2023
                07 March 2023
                : 26
                : 2
                : 88-98
                [1 ]Department of Paediatrics, University of Otago Christchurch, Christchurch, New Zealand.
                [2 ]Department of Paediatric Gastroenterology, Sydney Children’s Hospital, Randwick, Australia.
                Author notes
                Correspondence to Angharad Vernon-Roberts. Department of Paediatrics, University of Otago, Christchurch, 2 Riccarton Ave 8011, New Zealand. angharad.hurley@ 123456otago.ac.nz
                Copyright © 2023 by The Korean Society of Pediatric Gastroenterology, Hepatology and Nutrition

                This is an open-access article distributed under the terms of the Creative Commons Attribution Non-Commercial License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

                Funded by: Cure Kids, CrossRef https://doi.org/10.13039/501100001515;
                Original Article

                inflammatory bowel disease,agreement,subjective symptoms,child,parents


                Comment on this article