Department of Clinical Sciences and Community Health, University of Milan, Milan, Italy.
Ophthalmological Unit, Fondazione IRCCS Cà Granda - Ospedale Maggiore Policlinico, Milan, Italy.
Ophthalmic Res. 2024;67(1):516-527. doi: 10.1159/000540390. Epub 2024 Aug 29.
Diabetic macular edema (DME) and neovascular age-related macular degeneration (nAMD) require frequent anti-vascular endothelial growth factor (VEGF) treatment and monitoring visits. We aimed to understand the burden of treatment on caregivers.
This multinational, noninterventional study used a cross-sectional survey of adult patients with DME or nAMD treated with anti-VEGF injections in the USA, Canada, France, Italy, Spain, and the UK. The survey assessed caregivers' sociodemographic characteristics, patient relationships, patients' clinical history and treatment experiences, caregivers' experiences, and the Caregiver Reaction Assessment of caregiving burden.
Caregivers for patients with DME (n = 30) and nAMD (n = 95) completed surveys. Mean ± standard deviation (SD) age was 64.0 ± 13.4 years, and most were female (71.2%), white (70.4%), married (66.4%), and from Europe (67.2%). Most were caring for their mother/father or partner/spouse (85.6%). Mean ± SD length of time as a caregiver was 9.1 ± 10.0 years. Caregivers estimated they provided support for 4.2 ± 2.9 days/week and 6.0 ± 7.1 h/day on average. Nearly half of caregivers (45.6%) reported some impairment in daily activities, and more than two-thirds (70.5%) of working caregivers (n = 44) reported work absenteeism due to anti-VEGF treatment/monitoring appointments. At least one treatment barrier was reported by 66.7% and 50.5% of caregivers of patients with DME and nAMD, respectively, which were related to coronavirus disease 2019- (38.4%), clinic- (18.4%), social-/health- (13.6%), treatment- (10.4%), or financial-related factors (4.8%). Caregiver Reaction Assessment scores indicated mild-to-moderate burden, with higher caregiver schedule disruption scores associated with an increasing number of anti-VEGF treatment/monitoring visits among DME caregivers (r = 0.61).
Caregivers devote substantial time to caregiving, leading to schedule disruptions and absenteeism for some working caregivers. Positive and negative impacts on caregiver mental health were reported.
糖尿病性黄斑水肿（DME）和新生血管性年龄相关性黄斑变性（nAMD）需要频繁进行抗血管内皮生长因子（VEGF）治疗和监测就诊。本研究旨在了解治疗对护理人员的负担。
这是一项多国家、非干预性研究，使用横断面调查评估了美国、加拿大、法国、意大利、西班牙和英国接受抗 VEGF 注射治疗的 DME 或 nAMD 成年患者的护理人员的社会人口学特征、患者关系、患者的临床病史和治疗经历、护理人员的经历以及 caregiver Reaction Assessment 对护理负担的评估。
完成调查的 DME 患者（n=30）和 nAMD 患者（n=95）的护理人员。平均年龄（标准差）为 64.0±13.4 岁，大多数为女性（71.2%）、白人（70.4%）、已婚（66.4%）和来自欧洲（67.2%）。大多数人照顾他们的母亲/父亲或伴侣/配偶（85.6%）。平均（标准差）作为护理人员的时间为 9.1±10.0 年。护理人员估计他们每周平均提供 4.2±2.9 天的支持，每天提供 6.0±7.1 小时。近一半的护理人员（45.6%）报告说他们的日常活动受到了一些影响，超过三分之二（70.5%）的有工作的护理人员（n=44）因抗 VEGF 治疗/监测预约而缺勤。分别有 66.7%和 50.5%的 DME 和 nAMD 患者的护理人员报告了至少一种治疗障碍，这些障碍与 2019 年冠状病毒病（38.4%）、诊所（18.4%）、社会/健康（13.6%）、治疗（10.4%）或财务相关因素（4.8%）有关。护理人员反应评估得分表明存在轻度至中度负担，DME 护理人员的护理人员日程安排中断得分越高，抗 VEGF 治疗/监测就诊次数就越多（r=0.61）。
护理人员投入大量时间进行护理，导致一些有工作的护理人员的日程安排中断和缺勤。报告了对护理人员心理健康的积极和消极影响。
