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成人和儿童弱视患者视觉功能损害及与健康相关生活质量影响的定性探索

Qualitative Exploration of the Visual Function Impairments and Health-Related Quality of Life Impacts of Amblyopia in Adult and Pediatric Populations.

作者信息

Randhawa Sharan, Griffiths Natasha, O'Brien Paul, Panter Charlotte, Boparai Kieran, Harrad Richard, Khuddus Nausheen, Webber Ann, Bouchet Christine, Felizzi Federico

机构信息

Adelphi Values Ltd, Bollington, Cheshire, UK.

Novartis Ireland Ltd, Dublin, Ireland.

出版信息

Ophthalmol Ther. 2023 Oct;12(5):2505-2528. doi: 10.1007/s40123-023-00751-8. Epub 2023 Jun 25.

Abstract

INTRODUCTION

Amblyopia is a reduction in vision in one or both eyes due to impaired development of the visual pathway. This study explored the experience of amblyopia and treatment from the patient, caregiver, and clinician perspectives.

METHODS

A targeted literature review, including a review of social media listening (SML) studies, was conducted. Next, qualitative interviews were conducted with amblyopia patients, caregivers of children with amblyopia, and ophthalmologists with experience treating patients with amblyopia. The findings informed the development of a disease model. Amblyopia clinical experts provided input at key stages.

RESULTS

Twelve data sources were reviewed, including qualitative studies in the literature and SML studies. Overall, 133 patients/caregivers were interviewed (23 adults, 16 adolescents, 47 child-caregiver dyads), plus 10 ophthalmologists from the United States, France, and Germany. Reduced visual acuity, impaired depth perception, impaired peripheral vision, and double vision were the most frequently reported symptoms. Amblyopia impacted daily activities (reading, using digital devices), the ability to move around, school/work (productivity, seeing the board in class), emotional well-being (frustration, sadness), and social functioning (difficulty socializing). Treatments, including patching and corrective lens, also impacted daily activities (using digital devices, sports/leisure), mobility (bumping into things), and work/school (tasks taking longer) as well as emotional well-being (embarrassment), and social functioning (bullying/stigma).

CONCLUSION

The findings contribute valuable insights into the adult and pediatric experience of amblyopia from a multi-stakeholder perspective. The findings were used to critically assess existing clinical outcome assessments and supported the development of patient- and observer-reported outcome measures for use in amblyopia clinical trials.

摘要

引言

弱视是由于视觉通路发育受损导致一只或两只眼睛视力下降。本研究从患者、照顾者和临床医生的角度探讨了弱视及治疗体验。

方法

进行了一项有针对性的文献综述,包括对社交媒体倾听(SML)研究的综述。接下来,对弱视患者、弱视儿童的照顾者以及有弱视治疗经验的眼科医生进行了定性访谈。研究结果为疾病模型的建立提供了依据。弱视临床专家在关键阶段提供了意见。

结果

共审查了12个数据源,包括文献中的定性研究和SML研究。总体而言,共采访了133名患者/照顾者(23名成年人、16名青少年、47对儿童-照顾者),外加来自美国、法国和德国的10名眼科医生。视力下降、深度感知受损、周边视力受损和复视是最常报告的症状。弱视影响日常活动(阅读、使用数字设备)、行动能力、学校/工作(生产力、在课堂上看黑板)、情绪健康(沮丧、悲伤)和社交功能(社交困难)。包括遮盖和佩戴矫正眼镜在内的治疗方法也影响日常活动(使用数字设备、运动/休闲)、行动能力(撞到东西)、工作/学校(完成任务时间变长)以及情绪健康(尴尬)和社交功能(被欺负/受污名化)。

结论

这些发现从多利益相关方的角度为成人和儿童的弱视体验提供了有价值的见解。这些发现被用于严格评估现有的临床结局评估,并支持开发用于弱视临床试验的患者报告结局和观察者报告结局指标。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7ee9/10441976/65e747b7ccb9/40123_2023_751_Fig1_HTML.jpg

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