Paudel Nabin, Moran Ellen M, Stafford Sinead, McVicker Kelly, Stratieva Petia, Daly Avril
Retina International, Dublin, Ireland.
Clin Ophthalmol. 2025 Sep 9;19:3317-3329. doi: 10.2147/OPTH.S525046. eCollection 2025.
Geographic atrophy (GA), an advanced form of dry AMD, impacts over 5 million people globally and leads to progressive, irreversible vision loss. Current approaches to GA treatment aim to prevent and delay disease progression and preserve remaining vision. However, there is a debate on what constitutes a meaningful treatment outcome for patients. The aim of this study was to prioritise challenges associated with GA and desired treatment expectations from therapies using a modified Nominal Group Technique (NGT).
The study employed a modified nominal group technique (NGT), a widely used, validated, structured, facilitated group meeting to generate consensus. Representatives from patient-driven international research funding and support organizations were invited to participate. Two questions, one asking the impact of GA on patients and caregivers and another asking the treatment expectations of GA therapies were posed during the NGT session. Standard NGT methods were followed to generate top 10 challenges of living with GA and treatment expectation as perceived by the participants.
The group ranked loss of independence (score - 32/50), difficulty recognizing faces (score - 28/50), impairment in daily living activities (scores - 11 to 22/50), and mental health issues (scores - 19/50 - anxiety, 21/50 - depression) as the most significant challenges faced by people living with GA. The group also prioritised stability of vision (score - 47/50), ability to recognise faces (score - 27/50) and one time therapy (score - 19/50) as their top expectations from GA treatments.
This study successfully used the NGT to prioritise challenges associated with GA and treatment expectation of GA therapies. The consensus results imply that meaningful progress in GA care will come from therapies that realistically aim to slow further vision loss, are convenient to use, and are delivered alongside psychosocial and low-vision support.
地图样萎缩（GA）是干性年龄相关性黄斑变性（AMD）的一种晚期形式，全球有超过500万人受其影响，并导致进行性、不可逆转的视力丧失。目前GA的治疗方法旨在预防和延缓疾病进展，并保留剩余视力。然而，对于什么构成对患者有意义的治疗结果存在争议。本研究的目的是使用改良的名义组技术（NGT）对与GA相关的挑战以及对治疗的期望进行优先排序。
本研究采用改良的名义组技术（NGT），这是一种广泛使用、经过验证、结构化且有主持人引导的小组会议，以达成共识。邀请了患者驱动的国际研究资金和支持组织的代表参与。在NGT会议期间提出了两个问题，一个是询问GA对患者和护理人员的影响，另一个是询问对GA治疗的期望。遵循标准的NGT方法来确定参与者认为的GA患者生活中面临的前10大挑战以及治疗期望。
该小组将独立性丧失（得分 - 32/50）、面部识别困难（得分 - 28/50）、日常生活活动受损（得分 - 11至22/50）以及心理健康问题（得分 - 19/50 - 焦虑，21/50 - 抑郁）列为GA患者面临的最重大挑战。该小组还将视力稳定性（得分 - 47/50）、面部识别能力（得分 - 27/50）和一次性治疗（得分 - 19/50）列为对GA治疗的首要期望。
本研究成功使用NGT对与GA相关的挑战以及GA治疗的期望进行了优先排序。共识结果表明，GA护理方面有意义的进展将来自于切实旨在减缓进一步视力丧失、使用方便且能提供心理社会和低视力支持的治疗方法。
