文章基本信息

标题：How do existing HIV-specific instruments measure up? Evaluating the ability of instruments to describe disability experienced by adults living with HIV
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作者：Kelly K O'Brien ; Ahmed M Bayoumi ; Carol Strike 等
期刊名称：Health and Quality of Life Outcomes
印刷版ISSN：1477-7525
电子版ISSN：1477-7525
出版年度：2010
卷号：8
期号：1
页码：88
DOI：10.1186/1477-7525-8-88
语种：English
出版社：BioMed Central
摘要：Despite the multitude of health challenges faced by adults living with HIV, we know of no HIV-specific instrument developed for the purpose of describing the health-related consequences of HIV, a concept known as disability. In a previous phase of research, adults living with HIV conceptualized disability as symptoms/impairments, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty that may fluctuate on a daily basis and over the course of living with HIV. In this paper, we describe the extent to which existing HIV-specific health-status instruments capture the experience of disability for adults living with HIV. We searched databases from 1980 to 2006 for English language, HIV-specific, self-reported questionnaires consisting of at least two items that were tested for reliability and validity. We then conducted a content analysis to assess how well existing questionnaires describe disability as defined by the Episodic Disability Framework, a framework that conceptualizes this experience from the perspective of adults living with HIV. We matched items of the instruments with categories of the framework to evaluate the extent to which the instruments capture major dimensions of disability in the framework. We reviewed 4274 abstracts, of which 30 instruments met the inclusion criteria and were retrieved. Of the four major dimensions of disability, symptoms/impairments were included in all 30 instruments, difficulties with day-to-day activities in 16, challenges to social inclusion in 16, and uncertainty in 9. Seven instruments contained at least 1 item from all 4 dimensions of disability (breadth) however, the comprehensiveness with which the dimensions were represented (depth) varied among the instruments. In general, symptoms/impairments and difficulties carrying out day-to-day activities were the disability dimensions characterized in greatest depth while uncertainty and challenges to social inclusion were less well represented. Although none of the instruments described the full breadth and depth of disability as conceptualized by the Episodic Disability Framework, they provide a foundation from which to build a measure of disability for adults living with HIV.
关键词：Social Inclusion ; Lipodystrophy ; Disability Questionnaire ; Emotional Challenge ; Disability Instrument