国际儿童健康相关生活质量自评和代理报告测量工具使用指南：系统评价方案。

International guidelines for self-report and proxy completion of paediatric health-related quality of life measures: a protocol for a systematic review.

机构信息

College of Nursing and Health Sciences, Flinders University, Adelaide, South Australia, Australia

Centre for Health Economics, Monash University, Melbourne, Victoria, Australia.

出版信息

BMJ Open. 2021 Dec 8;11(12):e052049. doi: 10.1136/bmjopen-2021-052049.

DOI:10.1136/bmjopen-2021-052049

PMID:34880018

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8655531/

Abstract

INTRODUCTION

Measures of health-related quality of life (HRQoL), accompanied by the values (or utilities) required to estimate quality-adjusted life-years, are crucial for determining health benefits within economic evaluation and health technology assessment. Several generic and condition-specific measures or instruments of HRQoL, accompanied by values, currently exist for application with child populations. However, there is a lack of a structured summary of guidelines and recommendations for applying these measures in practice. This protocol describes a systematic review of guidelines and recommendations for child and proxy completion of child-specific measures of HRQoL. The aims of the review are to (1) identify and summarise published guidelines and recommendations for existing child-specific measures of HRQoL, (2) determine whether the identified guidelines and recommendations differ by instrument and child characteristics, (3) identify current gaps in these guidelines and recommendations and (4) identify best practices for child self and proxy assessment in paediatric HRQoL measurement for economic evaluation and health technology assessment.

METHODS AND ANALYSIS

The review will identify, collate and synthesise published guidelines and recommendations for existing child-specific utility measures of HRQoL. Electronic databases to be searched include the Cochrane Library, Medline, Scopus, Web of Science, EconLit, PsycINFO, CINAHL, Embase and Informit. The search will be extended to websites of (1) international organisations for health technology assessment, (2) regulation, health economics and HRQoL outcomes research and (3) instrument developers. Three reviewers will independently screen titles and abstracts against the inclusion criteria. A narrative synthesis will describe the key features of the guidelines identified.

ETHICS AND DISSEMINATION

Ethical approval is not required as the proposed systematic review will not use primary data. A paper of the systematic review will be submitted to a peer-reviewed journal for publication.

PROSPERO REGISTRATION NUMBER

CRD42020207160.

摘要

简介

健康相关生活质量（HRQoL）的衡量标准，以及估算质量调整生命年所需的价值（或效用），对于在经济评估和卫生技术评估中确定健康效益至关重要。目前有一些通用和特定疾病的 HRQoL 衡量标准或工具，以及相应的价值，可用于儿童群体。然而，在实践中应用这些衡量标准的指南和建议缺乏结构化总结。本方案描述了一项针对儿童特定 HRQoL 衡量标准的指南和建议的系统综述。综述的目的是：（1）识别和总结现有的儿童特定 HRQoL 衡量标准的已发表指南和建议，（2）确定所确定的指南和建议是否因工具和儿童特征而异，（3）确定这些指南和建议中的当前差距，以及（4）确定在儿科 HRQoL 测量的经济评估和卫生技术评估中，儿童自我和代理评估的最佳实践。

方法和分析

本综述将识别、整理和综合现有的儿童特定 HRQoL 效用衡量标准的已发表指南和建议。将搜索的电子数据库包括 Cochrane 图书馆、Medline、Scopus、Web of Science、EconLit、PsycINFO、CINAHL、Embase 和 Informit。搜索范围将扩展至以下网站：（1）国际卫生技术评估组织，（2）法规、健康经济学和 HRQoL 结果研究，以及（3）工具开发者。三名评审员将独立筛选标题和摘要以符合纳入标准。叙述性综合将描述所确定指南的主要特征。