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. 2023 Mar;26(2):88-98.
doi: 10.5223/pghn.2023.26.2.88. Epub 2023 Mar 7.

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

Angharad Vernon-Roberts  1 , Emma Rouse  1 , Nerissa L Bowcock  2 , Daniel A Lemberg  2 , Andrew S Day  1
Affiliations

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

Angharad Vernon-Roberts et al. Pediatr Gastroenterol Hepatol Nutr. 2023 Mar.

Abstract

Purpose: 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.

Methods: 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).

Results: 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.

Conclusion: 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.

Keywords: Agreement; Child; Inflammatory bowel disease; Parents; Subjective symptoms.

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Conflict of interest statement

Conflict of Interest: The authors have no financial conflicts of interest.

Figures

Fig. 1
Fig. 1. Level of individual agreement between child/parent pairs for IBDnow categories.
IBD: inflammatory bowel disease.
Fig. 2
Fig. 2. Individual agreement between child/parent pairs. Data presented as a percentage of each age group to account for different group sizes.
IBD: inflammatory bowel disease.
Fig. 3
Fig. 3. Level of category agreement, under, and over-estimation for IBDnow categories.
IBD: inflammatory bowel disease.
Fig. 4
Fig. 4. Level of overall agreement between children and parents to all IBDnow categories, stratified by diagnosis.
CD: Crohn’s disease, UC: ulcerative colitis, IBDU: inflammatory bowel disease unclassified.
Fig. 5
Fig. 5. Inter-rater reliability between child and parent symptom ratings for IBDnow categories. Outer wheel presents IBDnow categories with Gwet’s AC1 result in brackets. Inner wheel presents corresponding level of agreement for the reliability coefficient.
IBD: inflammatory bowel disease.
See this image and copyright information in PMC

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