PDF(Pubmed)
Abstract：
Neovascular age-related macular degeneration (nAMD) is a prevalent cause of permanent vision loss and blindness in the elderly worldwide, with a significant impact on patients\' daily lives. However, burdens related to nAMD from the patients\' perspective have not been well documented. Here we developed a new questionnaire after eliciting nAMD patients\' daily challenges followed by a pilot survey. Seven daily life burden domains were identified, and a quantitative survey was conducted using the questionnaire in the real-world clinic. Of the total 153 participants (mean age, 76.3 ± 8.3 years), 67 (43.8%) had bilateral nAMD, and 79 (52.7%) were classified into severe nAMD according to the best-corrected visual acuity with cut-off value of 0.52 in logMAR. Patients with bilateral and severe nAMD had significantly higher burden scores across all domains. Network models for the bilateral and severe disease subgroups identified the interactions between \"activity of daily living\" and \"hand-eye coordination\" and between \"use of electronic devices\" and \"face recognition\" domains, which were considered to be important burdens for the patients. These results can advance ophthalmologists\' understanding of the impact of nAMD on patients\' daily lives and the importance of active and continuing treatment for patients with nAMD.
摘要：
新生血管性年龄相关性黄斑变性（nAMD）是全球老年人永久性视力丧失和失明的主要原因。对患者的日常生活产生重大影响。然而,从患者的角度来看，与nAMD相关的负担还没有得到很好的记录。在这里，我们在引发nAMD患者的日常挑战后开发了一份新的问卷，随后进行了一项试点调查。确定了七个日常生活负担域，并在现实世界的诊所使用问卷进行了定量调查。在总共153名参与者中(平均年龄，76.3±8.3年)，67例（43.8%）双侧nAMD，根据最佳矫正视力将79例（52.7％）分为严重nAMD，logMAR的临界值为0.52。双侧和重度nAMD患者在所有领域的负担得分均显着较高。双边和严重疾病亚组的网络模型确定了“日常生活活动”和“手眼协调”之间以及“电子设备使用”和“面部识别”领域之间的相互作用，这被认为是患者的重要负担。这些结果可以促进眼科医生了解nAMD对患者日常生活的影响，以及积极和持续治疗nAMD患者的重要性。
