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The 2016 American Academy of Ophthalmology IRIS Registry (Intelligent Research in Sight) Database: Characteristics and Methods.2016 年美国眼科学会虹膜注册研究(智能视野研究)数据库:特征和方法。
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The American Academy of Ophthalmology's IRIS Registry (Intelligent Research in Sight Clinical Data): A Look Back and a Look to the Future.美国眼科学会的IRIS注册库(视力智能研究临床数据):回顾与展望未来。
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用于评估微创青光眼手术的基于视觉的健康相关生活质量调查。

Vision-Targeted Health-Related Quality-of-Life Survey for Evaluating Minimally Invasive Glaucoma Surgery.

机构信息

From the Scheie Eye Institute, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

Department of Medicine, University of California, Los Angeles, Los Angeles, California, USA; RAND Corporation, Santa Monica, California, USA.

出版信息

Am J Ophthalmol. 2021 Sep;229:145-151. doi: 10.1016/j.ajo.2021.03.064. Epub 2021 Apr 11.

DOI:10.1016/j.ajo.2021.03.064
PMID:33852908
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8502782/
Abstract

PURPOSE

To develop a vision-targeted health-related quality-of-life instrument for patients with glaucoma who are candidates for minimally invasive glaucoma surgery (MIGS).

DESIGN

Development of a health-related quality-of-life instrument.

PARTICIPANTS

Twelve practicing ophthalmologists and 41 glaucoma patients.

METHODS

A questionnaire was constructed to assess functional limitations, vision-related symptoms, aesthetics, psychosocial issues, and surgical satisfaction for MIGS candidates. Questions were drafted after a review of the literature and subsequently refined based upon input from 1 physician and 4 patient focus groups. Nineteen cognitive interviews were used to ensure that questions were understandable to respondents.

RESULTS

The focus group identified the following key issues and concerns as being important to glaucoma patients: functional limitations (eg, driving), bodily discomfort (eg, stinging from drops), changes in appearance (eg, drooping eyelid), and psychosocial concerns (eg, mental burden associated with a diagnosis of glaucoma, financial burden of treatment). Cognitive interviews resulted in the following improvements to the questionnaire: changes in wording to clarify lighting conditions, and additional questions addressing psychosocial issues, such as job loss, severity of disease, and perception of MIGS.

CONCLUSIONS

A patient-reported outcomes instrument, the Glaucoma Outcomes Survey, was developed to evaluate MIGS for patients with mild to moderate glaucoma. Next steps include electronic administration to patients selected from the American Academy of Ophthalmology Intelligent Research in Sight (IRIS) registry. An electronic patient-reported outcomes platform will be used to administer the questionnaire before and after MIGS. The questionnaire will improve understanding of how surgical interventions such as MIGS impact vision-targeted health-related quality-of-life in glaucoma patients.

摘要

目的

为接受微创青光眼手术(MIGS)的青光眼患者开发一种针对视力的健康相关生活质量量表。

设计

健康相关生活质量量表的开发。

参与者

12 名执业眼科医生和 41 名青光眼患者。

方法

构建了一个问卷,用于评估 MIGS 候选者的功能障碍、与视力相关的症状、美学、心理社会问题和手术满意度。问题是在对文献进行审查后起草的,随后根据 1 名医生和 4 名患者焦点小组的意见进行了修订。进行了 19 次认知访谈,以确保问题对受访者来说是可理解的。

结果

焦点小组确定了以下关键问题和关注点对青光眼患者很重要:功能障碍(例如,驾驶)、身体不适(例如,滴眼后的刺痛感)、外观改变(例如,眼睑下垂)和心理社会问题(例如,与青光眼诊断相关的精神负担、治疗的经济负担)。认知访谈导致问卷进行了以下改进:措辞的更改以澄清照明条件,以及添加了一些针对心理社会问题的问题,例如失业、疾病严重程度和对 MIGS 的看法。

结论

开发了一种患者报告的结果量表,即青光眼结果调查(Glaucoma Outcomes Survey),用于评估轻度至中度青光眼患者的 MIGS。下一步包括从美国眼科学会智能研究视野(IRIS)注册中选择患者进行电子管理。将使用电子患者报告结果平台在 MIGS 前后管理问卷。该问卷将提高对手术干预(如 MIGS)如何影响青光眼患者视力相关健康相关生活质量的理解。