Purpose

To understand levels of disease burden and progression in a real-world setting among patients from the United Kingdom with bilateral geographic atrophy (GA) secondary to age-related macular degeneration (AMD).

Design

Retrospective cohort analysis of a multicenter electronic medical record (EMR) database.

Participants

Patients who were aged ≥50 years with bilateral GA and no history of choroidal neovascularization (CNV) and who attended 1 of 10 clinical sites using the EMR.

Methods

A deidentified data set was constructed from the records held at the 10 sites. An algorithm was used to extract cases with a GA diagnosis, of which 1901 had bilateral GA and form the basis of this report. A sample of records randomly selected from each center was used to validate disease definitions.

Main Outcome Measures

Progression to blindness (visual acuity [VA] <20 letters or Snellen 3/60 in the better-seeing eye), driving ineligibility (VA ≤70 letters or Snellen 6/12 in the better-seeing eye), progression to CNV, loss of 10 or more letters, and mean change in VA over time.

Results

At first record of GA, 7.1% had a VA in the better-seeing eye equal to or lower than the cutoff for blindness registration and 71.1% had a VA that would have rendered them ineligible to drive. Over time, 16% became legally blind (median time to outcome, 6.2 years) and 66.7% became ineligible to drive (median time to outcome, 1.6 years). In the worse-seeing eye, 40.1% lost ≥10 letters in 2.4 years. Among patients with baseline and 24-month VA measurements, mean VA decline was 6.1 letters in the worse-seeing eye (n = 413) and 12.4 letters in the better-seeing eye (n = 414). The rate of progression to CNV in either eye was 7.4% per patient-year.

Conclusions

At initial diagnosis, based on VA in the better-seeing eye, a high proportion of patients with bilateral GA were ineligible to drive and approximately 7% were eligible for UK blindness registration. The subsequent reduction in VA that occurred in the better-seeing eye would render a further two-thirds ineligible to drive. These findings emphasize the severity of the visual disability associated with GA secondary to AMD.

中文翻译：

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表征与年龄相关的黄斑变性继发的疾病负担和地理萎缩的进展

目的

了解在现实世界中来自英国的继发于年龄相关性黄斑变性（AMD）的双侧地理萎缩（GA）患者的疾病负担水平和进展情况。

设计

多中心电子病历（EMR）数据库的回顾性队列分析。

参加者

年龄≥50岁的双侧GA患者，无脉络膜新血管形成（CNV）史，并且使用EMR参加了10个临床部位中的1个。

方法

从这10个站点中保存的记录中构建了一个不明身份的数据集。使用一种算法提取具有GA诊断的病例，其中1901年患有双侧GA，构成了本报告的基础。从每个中心随机选择的记录样本用于验证疾病定义。

主要观察指标

进展为失明（视力[VA] <20个字母或视力更好的Snellen 3/60），驾驶不合格（VA≤70个字母或视力更好的Snellen 6/12），发展为CNV，丧失10个或更多字母，表示VA随时间变化。

结果

在GA的第一个记录中，有7.1％的视力良好的VA等于或低于失明登记的临界值，而有71.1％的VA会使他们没有驾驶资格。随着时间的流逝，有16％的人成为法律上的盲人（达到结果的中位数时间为6.2年），有66.7％的人没有资格开车（达到结果的中位数时间为1.6年）。在视力较差的眼睛中，有40.1％的人在2.4年内丢失了≥10个字母。在具有基线和24个月VA测量值的患者中，视力较差的眼睛的平均VA下降为6.1个字母（n = 413），而视力较好的眼睛的平均VA下降为12.4个字母（n = 414）。每只患者每年每只眼的CNV进展率为7.4％。

结论

最初诊断时，以视力较好者的VA为基础，有很大比例的双侧GA患者不适合驾驶，约有7％的患者可以进行UK失明登记。随后出现在视力较好的眼睛中的视力下降将使另外三分之二的人不适合驾驶。这些发现强调了继发于AMD的GA相关的视力残疾的严重性。