Department of Health Research Methods, Evidence, and Impact.
Department of Ophthalmology and Vision Sciences, University of Toronto, Toronto.
J Glaucoma. 2018 Jul;27(7):585-591. doi: 10.1097/IJG.0000000000000984.
To develop a descriptive system for a glaucoma-specific preference-based health-related quality of life (HRQoL) instrument: the Health Utility for Glaucoma (HUG-5).
The descriptive system was developed in 2 stages: item identification and item selection. A systematic literature review of HRQoL assessment of glaucoma was conducted using a comprehensive search strategy. Purposeful sampling was used to recruit patients with different clinical characteristics. Relevant items were presented to glaucoma patients through face-to-face, semistructured interviews. Framework methodology was applied to analyze interview content. The recurring themes identified through an iterative content analysis represented topics of most importance and relevance to patients. These themes formed the domains of the HUG-5 descriptive system. Three versions of the descriptive system, differing in explanatory detail, were pilot tested using a focus group.
The literature review identified 19 articles which contained 266 items. These items were included for the full-text review and were used to develop an interview guide. From 12 patient interviews, 22 themes were identified and grouped into 5 domains that informed the 5 questions of the descriptive system. The HUG-5 measures visual discomfort, mobility, daily life activities, emotional well-being, and social activities. Each question has 5 response levels that range from "no problem" to "severe problem." The focus group comprised 7 additional patients unanimously preferred the version that contained detailed, specific examples to support each question.
A 5-domain descriptive system of a glaucoma-specific preference-based instrument, the HUG-5, was developed and remains to be evaluated for validity and reliability in the glaucoma patient population.
开发一种用于特定于青光眼的偏好健康相关生活质量（HRQoL）工具的描述性系统：青光眼健康效用（HUG-5）。
描述性系统分两个阶段开发：项目识别和项目选择。使用全面的搜索策略对青光眼的 HRQoL 评估进行了系统文献回顾。采用有目的抽样招募具有不同临床特征的患者。通过面对面、半结构化访谈向青光眼患者呈现相关项目。应用框架方法分析访谈内容。通过迭代内容分析确定的反复出现的主题代表了对患者最重要和最相关的主题。这些主题构成了 HUG-5 描述性系统的领域。使用焦点小组对 3 个不同解释详细程度的描述性系统版本进行了试点测试。
文献综述确定了包含 266 个项目的 19 篇文章。这些项目被纳入全文审查，并用于开发访谈指南。通过对 12 名患者的访谈，确定了 22 个主题，并将其分为 5 个领域，为描述性系统的 5 个问题提供信息。HUG-5 衡量视觉不适、移动性、日常生活活动、情绪健康和社会活动。每个问题有 5 个回答级别，从“没有问题”到“严重问题”。焦点小组由另外 7 名患者组成，他们一致更喜欢包含详细、具体示例以支持每个问题的版本。
开发了一种特定于青光眼的基于偏好的仪器的 5 域描述性系统，即 HUG-5，该系统仍需在青光眼患者群体中进行有效性和可靠性评估。
