Rajasegaran Suganthi, Ahmad Nur Aini, Tan Shung Ken, Lechmiannandan Abhirrami, Tan Yew-Wei, Sanmugam Anand, Singaravel Srihari, Nah Shireen Anne
Division of Paediatric & Neonatal Surgery, Department of Surgery, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
Department of Paediatric Surgery, Sabah Women's & Children's Hospital, Kota Kinabalu, Sabah, Malaysia.
J Pediatr Surg. 2025 Feb;60(2):161687. doi: 10.1016/j.jpedsurg.2024.161687. Epub 2024 Aug 13.
Quality of life (QOL) is an important clinical endpoint in paediatric chronic conditions. How parent-proxy reports differ from child self-reported QOL in patients with anorectal malformation (ARM) and Hirschsprung's disease (HD) has not been well examined to date. This study evaluates agreement between parent-proxy and child-reported QOL scores in ARM and HD patients compared to healthy controls.
We recruited ARM and HD patients aged 5-17 years and their parents at four tertiary referral centres between December 2020 to February 2023 who had corrective surgery done >12 months prior. Healthy controls were age-matched and gender-matched. They completed the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and General Well-Being (GWB) Scale. The questionnaires were administered in parallel parent-proxy-report and child self-report formats. Appropriate statistical analysis was performed with p < 0.05 significance. Data are reported as median (interquartile range). Ethical approval was obtained.
There were 65 ARM, 54 HD and 83 controls. There were no significant differences between parent-reported scores and child-reported scores overall in the Total, Psychosocial Health and Physical Health components of Core Scales for ARM, HD and controls. However, parent-reported scores were significantly higher than child-reported scores overall in ARM, HD and controls in the GWB Scale.
Our findings show that parent-rated and child-rated overall QOL was similar in Core Scales for ARM, HD, and controls. However, parents overestimated child's overall GWB for ARM, HD and controls. This highlights the importance of capturing the perspectives of both parents and children to inform strategies to improve patient care.
Level III.
生活质量（QOL）是儿科慢性病的一个重要临床终点。迄今为止，在肛门直肠畸形（ARM）和先天性巨结肠病（HD）患者中，家长代理报告与儿童自我报告的生活质量有何不同尚未得到充分研究。本研究评估了ARM和HD患者与健康对照相比，家长代理报告和儿童报告的生活质量评分之间的一致性。
我们在2020年12月至2023年2月期间，在四个三级转诊中心招募了年龄在5 - 17岁的ARM和HD患者及其父母，这些患者在12个月前已接受矫正手术。健康对照在年龄和性别上进行匹配。他们完成了儿童生活质量量表（PedsQL™）通用核心量表和总体幸福感（GWB）量表。问卷以平行的家长代理报告和儿童自我报告形式进行发放。进行了适当的统计分析，显著性水平为p < 0.05。数据以中位数（四分位间距）报告。获得了伦理批准。
有65例ARM患者、54例HD患者和83名对照。在ARM、HD患者和对照的核心量表的总分、心理社会健康和身体健康组成部分中，家长报告的分数和儿童报告的分数总体上没有显著差异。然而，在GWB量表中，ARM、HD患者和对照的家长报告分数总体上显著高于儿童报告分数。
我们的研究结果表明，在ARM、HD患者和对照的核心量表中，家长评定和儿童评定的总体生活质量相似。然而，家长高估了ARM、HD患者和对照儿童的总体幸福感。这突出了获取家长和儿童双方观点以指导改善患者护理策略的重要性。
三级。
