Chen Nan, Shi Bing, Huang Hanyao
Department of Epidemiology and Health Statistics, West China School of Public Health and West China Fourth Hospital, Sichuan University, Chengdu, China.
State Key Laboratory of Oral Diseases & National Clinical Research Center for Oral Diseases and Department of Oral Maxillofacial Surgery, West China Hospital of Stomatology, Sichuan University, Chengdu, China.
Front Surg. 2022 Mar 8;9:796941. doi: 10.3389/fsurg.2022.796941. eCollection 2022.
For the patient-reported outcome (PRO) measures related to patients with velopharyngeal inadequacy (VPI), different quality of life (QOL) instruments have been developed. The present systematic review was designated to identify current VPI-related QOL instrument development, validation, and applicability.
Pubmed, Cochrane, Embase, Web of Science, and EBSCO databases were searched in January 2022. "Velopharyngeal" or "palatopharyngeal" and "quality of life" or "life quality" were searched in title, abstract, and keywords. This study followed Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) guidelines. Two investigators independently reviewed abstracts and full texts of the identified literature. An established checklist was used to evaluate the measurement properties of each identified instrument.
A total of 375 articles and 13 instruments were identified, which can be divided into nine types of families according to their development procedures. Developmental and measurement characteristics, evidence of conceptual model, content validity, reliability, construct validity, scoring, interpretation, respondent burden, and presentation for all instruments were shown.
The patient's self-report assessment and parent-proxy assessment are both valuable. The conclusion that any QOL instrument is absolutely the best for patients with velopharyngeal inadequacy could not be drawn. Understanding the development and characteristics of different QOL instruments, including their reliability, validity, aim, target, language, and resource, should be important before application in clinic or research.
针对与腭咽闭合不全（VPI）患者相关的患者报告结局（PRO）测量，已开发出不同的生活质量（QOL）工具。本系统评价旨在确定当前与VPI相关的QOL工具的开发、验证及适用性。
于2022年1月检索了PubMed、Cochrane、Embase、Web of Science和EBSCO数据库。在标题、摘要和关键词中检索“腭咽”或“腭帆咽”以及“生活质量”或“生命质量”。本研究遵循系统评价和荟萃分析的首选报告项目（PRISMA）指南。两名研究者独立审查了所识别文献的摘要和全文。使用既定清单评估每个所识别工具的测量属性。
共识别出375篇文章和13种工具，根据其开发程序可分为九种类型。展示了所有工具的开发和测量特征、概念模型证据、内容效度、信度、结构效度、评分、解释、应答负担及呈现方式。
患者的自我报告评估和家长代理评估均有价值。无法得出任何一种QOL工具对腭咽闭合不全患者绝对是最佳的结论。在临床或研究中应用之前，了解不同QOL工具的开发和特征，包括其信度、效度、目的、目标人群、语言和资源，应很重要。
