Vernon-Roberts Angharad, Rouse Emma, Bowcock Nerissa L, Lemberg Daniel A, Day Andrew S
Department of Paediatrics, University of Otago Christchurch, Christchurch, New Zealand.
Department of Paediatric Gastroenterology, Sydney Children's Hospital, Randwick, Australia.
Pediatr Gastroenterol Hepatol Nutr. 2023 Mar;26(2):88-98. doi: 10.5223/pghn.2023.26.2.88. Epub 2023 Mar 7.
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.
炎症性肠病(IBD)患儿经常接受临床评估,这涉及临床医生、家长和患儿之间的三方沟通。在这类诊疗过程中,传统上家长是其孩子IBD相关信息的主要传达者,包括主观症状报告。目前对IBD症状方面患儿与其家长之间的一致程度了解甚少,本研究旨在探究这一因素。
这是一项针对IBD患儿及其一位家长的横断面研究。一份经过验证的儿科IBD症状报告工具(IBDnow)使患儿及其家长能够对七种疼痛、健康状况和粪便指标进行评分,二人组同时完成该工具。使用以下方法评估结果:个体一致性:每个二人组相同症状报告的比例(理想分数>0.7);类别一致性:该队列中IBDnow指标相同报告的百分比;评分者间信度:Gwet's AC1系数,分数越高表明信度越好(最大值=1)。
74个家长/患儿二人组参与研究;患儿平均年龄12.2岁(标准差[SD]2.9,范围6 - 16岁),自诊断以来的平均时间为2.8年(SD 3),54%为女性,73%患有克罗恩病。平均个体一致性水平为0.6,27%的二人组在≥6/7项IBDnow指标上达成一致。61%的二人组报告有类别一致性,20%的家长高估,19%的家长低估了其孩子的症状。评分者间信度从中等到良好不等。
这些结果应能提高临床医生对家长关于IBD症状报告可能引入偏差的认识。应将患儿视为症状报告的最重要来源,并利用IBDnow等工具加强沟通。