ABSTRACT

Introduction: Quality of life (QOL) is an important patient-reported outcome measure (PROM). Assessment of QOL in children is challenging particularly because developmental age affects the accuracy of self-reports.

Areas covered: This paper gives an overview and expert opinion of the factors impacting quality assessment of pediatric QOL. Given this literature is vast, we focused on QOL measurement in pediatric gastroenterological conditions as an example, but the general principles apply across childhood chronic diseases. Child developmental stage affects self-reports. Younger children are less reliable reporters implicating the need for parental proxies. However, parents may not be as cognizant of their child’s internal life especially as the child grows older. Adjustment to disease (QOL initially decreases then improves) as well as the time of year (QOL improves during summer) affects reports of QOL. Furthermore, it is important to acknowledge the impact of the child’s disease on caregivers and families’ QOL.

Expert opinion: The numerous aspects impacting pediatric QOL make assessment and measurement complex. We propose several strategies to guide this process such as assessing both self-report and parent-proxy measures, as well as considering the timing of QOL assessments.

摘要

简介：生活质量（QOL）是重要的患者报告结局指标（PROM）。对儿童的生活质量进行评估具有挑战性，特别是因为发育年龄会影响自我报告的准确性。

涵盖的领域：本文对影响儿科QOL质量评估的因素进行了概述和专家意见。鉴于文献资料丰富，我们以儿科胃肠病学中的QOL测量为例，但一般原则适用于儿童慢性疾病。儿童发育阶段会影响自我报告。年龄较小的孩子是不太可靠的记者，暗示需要父母代理。但是，父母可能对孩子的内在生活不甚了解，尤其是随着孩子的长大。对疾病的调整（最初的QOL降低然后有所改善）以及一年中的时间（夏季的QOL改善）都会影响QOL的报告。此外，重要的是要认识到儿童疾病对照顾者和家庭的QOL的影响。

专家意见：影响儿科QOL的众多方面使评估和测量变得复杂。我们提出了几种策略来指导这一过程，例如评估自我报告和父母代理措施，以及考虑QOL评估的时间。