基于项目反应理论的残疾儿童生命质量及康复效果研究

The rehabilitation of children with disabilities is one of the important worldwide issues in public health, and its target outcome is to improve quality of life (QOL) which is also a major policy goal of rehabilitation. Despite the increase in quality of life research in adults, quality of life of disabled children is relatively neglected and greatly lagged behind due to the reason that traditional methods applied in QOL research is largely limited by its item parametric instability and it is difficult to measure the children's subjective feeling and evaluate their disability or impairment. In this project, focus group discussion and Delphi method are used to develop original QOL questionnaire for Chinese children with disabilities. In order to develop a quality of life scale specifically suitable for children with disabilities, the original QOL questionnaire established above is detected, evaluated, and refined by constructing Samejima's graded response model (GRM) of item responses theory(IRT) and its information function. IRT is believed to provide a methodology to investigate each item's properties to assess what levels on the underlying trait are measured by items. To construct the norm for different disabilities, differential item functioning（DIF) is used to investigate variations in item and scale performance due to different character group membership. Finally, the rehabilitation effect and its influencing factors of the children with disabilities are assessed using QOL as the outcome index. The aim of the project is to develop a more efficient QOL scale for children with disabilities in which the number of items is reduced to provide comparable measurement precision and reliability. The prospective outcome of this project will provide a new instrument for assessing rehabilitation effect of children with disabilities and furthermore, give new clues for drawing up rehabilitation measure and policy.

残疾人康复是世界公共卫生领域关注的主要问题之一，其目标结局是提高生命质量（QOL）。目前残疾儿童QOL研究远远滞后于残疾成年人QOL的研究，其主要原因是传统QOL测量方法会导致残疾儿童对残疾或功能障碍的主观感觉和评价依赖于测试项目。本项目采用核心讨论组和Delphi法构建中国残疾儿童QOL初量表；通过构建项目反应理论Samejima等级反应模型(GRM)及其信息函数，对初量表进行检测与修订，以确定一种对被试潜在特质的估计不依赖于测验项目的、适合这一特殊群体的QOL量表；通过项目功能差异检测（DIF），分析不同残疾在某一项目上得分分布，建立分残疾类别的常模；以QOL作为结局指标，评价残疾儿童康复效果及其影响因素。本研究利用IRT参数估计不依赖于样本的优点，旨在开发一种以最少项目数达到预期精度的更适合残疾儿童QOL的量表，为评价残疾儿童康复效果提供工具，并为制定康复措施和政策提供科学依据。

残疾儿童的康复愈来愈成为社会关注的重要问题，它不仅影响孩子一生的生存质量和整个人口的素质，更关系社会的稳定和发展。目前，国内残疾儿童康复评价还处于起步阶段，康复内容以医学康复为主，评价康复效果多以短期指标为主。在测量工具和方法上，以往研究中测量多以古典测试理论为基础，尽管此方法计算简便、适用性广，但存在很多不足。本研究通过文献法、核心小组讨论（Focus Group Discussion，FGD）对残疾儿童生存质量测定量表核心模块和特异性模块的构成领域及方面进行探讨，形成条目池；（2）通过改良的德尔菲法对条目结构及语言进行调整和修改，形成残疾儿童生存质量测定量表的核心模块及各类残疾特异性模块；（3）通过现场问卷调查法回收各类残疾儿童相关数据，运用分半信度、克朗巴赫α系数、重测信度及验证性因子分析法以及利用IRT非线性模型题目参数不变性的优点测量评价量表。在传统方法的基础上利用项目反应理论（IRT）等统计方法对量表的信度、效度、区分度等进行考核评价。研究结果：（1）最终形成一套较为完善的“儿童生存质量测定量表（残疾共性模块+特异性模块）”，包括听障儿童生命质量测定量表、视障儿童生命质量测定量表、肢体残疾儿童生命质量测定量表、智障儿童生命质量测定量表。根据不同年龄段儿童认知水平和理解能力的，最终形成了各类残疾5-7岁听障儿童生存质量测定量表及家长代评量表和8-16岁听障儿童生存质量测定量表3份独立量表。其中，各单量表均由生理功能（PHF）、情感功能（EMF）、社会功能（SOF）、角色功能（ROF）、残疾儿童共性模块（DIS-GM）和各类残疾童特异性模块（DIS-SML）等6个领域构成；（2）利用量表对山西省部分残疾儿童生命质量及康复效果进行评价。同时证实此量表更适合我国残疾儿童的、可用于评价其健康状况和康复效果的生存质量量表，为探索提高听障儿童生存质量及其社会参与能力的措施提供测评工具。