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Agreement Level of Inflammatory Bowel Disease Symptom Reports between Children and Their Parents
Angharad Vernon-Roberts1, Emma Rouse1, Nerissa L Bowcock2
1Department of Paediatrics, University of Otago Christchurch, Christchurch, New Zealand.
Insights
Parental reports of pediatric inflammatory bowel disease (IBD) symptoms may be biased. Children are the primary source for symptom reporting, and tools like IBDnow can improve communication.
Area of Science:
- Pediatric Gastroenterology
- Clinical Communication
- Patient-Reported Outcomes
Background:
- Triadic communication (clinician, parent, child) is central to pediatric IBD clinical assessments.
- Parents traditionally serve as the primary informants regarding their child's IBD symptoms.
- Understanding parent-child agreement on IBD symptom reporting is crucial for accurate assessment.
Purpose of the Study:
- To examine the level of agreement between children and their parents regarding IBD symptom reports.
- To investigate potential biases introduced by parental reporting in pediatric IBD assessments.
Main Methods:
- Cross-sectional study involving 74 parent/child dyads with IBD.
- Utilized the validated pediatric IBD symptom tool, IBDnow, for concurrent symptom rating by children and parents.
- Assessed agreement using individual agreement proportion, category agreement, and Gwet's AC1 inter-rater reliability.
Main Results:
- Mean individual agreement between parent and child reports was 0.6 (ideal >0.7).
- Category agreement was observed in 61% of dyads, with parents overestimating symptoms in 20% and underestimating in 19%.
- Inter-rater reliability scores ranged from fair to good.
Conclusions:
- Parental symptom reports in pediatric IBD may introduce bias, highlighting the need for clinician awareness.
- Children should be prioritized as the primary source for symptom reporting in IBD management.
- Tools like IBDnow can enhance communication and improve the accuracy of symptom assessment.
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.
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