Intradyadic Correlation Between Parent-reported and Child-reported Quality of Life in Patients With Anorectal Malformation and Hirschsprung's Disease in Comparison to Healthy Controls

IF 2.4 2区医学 Q1 PEDIATRICS

Journal of pediatric surgery Pub Date : 2025-02-01 DOI:10.1016/j.jpedsurg.2024.161687

Suganthi Rajasegaran , Nur Aini Ahmad , Shung Ken Tan , Abhirrami Lechmiannandan , Yew-Wei Tan , Anand Sanmugam , Srihari Singaravel , Shireen Anne Nah

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引用次数: 0

Abstract

Background

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.

Methods

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.

Results

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.

Conclusion

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 of Evidence

Level III.

查看原文本刊更多论文

与健康对照组相比，肛门直肠畸形和赫氏普隆氏病患者家长报告的生活质量与儿童报告的生活质量之间的体内相关性。

背景：生活质量（QOL）是儿科慢性疾病的一个重要临床终点。在肛门直肠畸形（ARM）和赫斯普隆氏病（HD）患者中，家长代理报告与儿童自我报告的 QOL 有何不同，迄今尚未得到很好的研究。本研究评估了肛门直肠畸形（ARM）和HD患者与健康对照组相比，家长代理和儿童报告的 QOL 分数之间的一致性：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、在 12 个月前接受过矫正手术的 ARM 和 HD 患者及其父母。健康对照组的年龄和性别均匹配。他们填写了儿科生活质量量表™（PedsQL™）通用核心量表和一般幸福感量表。调查问卷以父母代理报告和儿童自我报告的形式同时进行。进行了适当的统计分析，结果以 p 表示：共有 65 名 ARM 患者、54 名 HD 患者和 83 名对照组患者。在核心量表的总分、社会心理健康和身体健康部分，ARM、HD 和对照组的家长报告得分与儿童报告得分之间没有明显差异。然而，在GWB量表中，ARM、HD和对照组的家长报告得分明显高于儿童报告得分：我们的研究结果表明，在 ARM、HD 和对照组的核心量表中，家长评分和儿童评分的总体 QOL 相似。然而，在 ARM、HD 和对照组中，家长高估了儿童的总体 GWB。这凸显了获取家长和儿童观点的重要性，从而为改善患者护理的策略提供依据：证据等级：III 级。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of pediatric surgery 医学-外科

CiteScore

1.10

自引率

12.50%

发文量

569

审稿时长

38 days

期刊介绍： The journal presents original contributions as well as a complete international abstracts section and other special departments to provide the most current source of information and references in pediatric surgery. The journal is based on the need to improve the surgical care of infants and children, not only through advances in physiology, pathology and surgical techniques, but also by attention to the unique emotional and physical needs of the young patient.