The emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey

Abstract

ObjectivesThis was a cross-sectional survey to evaluate the physical and emotional impact of wet age-related macular degeneration (wAMD) on a global cohort of patients who were receiving (or had previously received) antivascular endothelial growth factor injections, and caregivers (paid and unpaid).MethodsThe survey was performed in nine countries using an ophthalmologist-devised questionnaire.ResultsA total of 910 patients and 890 caregivers completed the questionnaire. Most patients had been diagnosed and receiving antivascular endothelial growth factor injections for more than 1 year (74.7% and 63.8%, respectively), and many patients (82.1%) received support from a caregiver (usually a child/grandchild [47.3%] or partner [23.3%]). wAMD had a negative impact on most patients (71.6%); many rated fear (44.9%), sadness (39.9%), frustration (37.3%), and depression (34.0%) as common. It was linked to physical consequences, such as difficulty in reading (61.1%). Many effects were significantly greater in patients with a longer duration of disease or with wAMD in both eyes. Some caregivers (unpaid) also reported that caregiving had a negative impact on them (31.1%); many reported emotions such as sadness (34.9%) and depression (24.4%), but many also felt useful (48.4%). Overall, 27.2% of caregivers (unpaid) rated caregiving as inconvenient; this was linked to days of employment/personal obligations missed.ConclusionwAMD has a significant negative impact on the lives of patients, including vision-related depression, poor mobility, and limitations in day-to-day activities. The impact on nonprofessional caregivers may be underestimated in terms of emotional impact (such as depression) and loss of productivity.

Profound vision loss impairs psychological well-being in young and middle-aged individuals

“…Prior studies have demonstrated that approximately one-third or more of elderly individuals with profound vision loss may experience clinically significant depression. 1 , 2 , 5 Nollett et al 5 estimated that 43% of patients at a low vision rehabilitation clinic had clinically significant depression, which is nearly as high as depression prevalence in patients with cancer about to undergo chemotherapy. The present analyses revealed a similarly high prevalence of presumed depression among younger individuals, with 49.5% of participants fulfilling criteria for MDD after vision loss.…”

Non-responsiveness to intravitreal aflibercept treatment in neovascular age-related macular degeneration: implications of serous pigment epithelial detachment

“…The incidence of age-related macular degeneration (AMD) is increasing in conjunction with an aging society 1 , and it is a leading cause of blindness worldwide 2 . Central visual impairment reduces the quality of life of otherwise healthy AMD patients and their carers 3 4 5 , therefore AMD constitutes a social issue. Recent research has determined that vascular endothelial growth factor (VEGF) is responsible for neovascular AMD, and three types of anti-VEGF drugs have been approved: pegaptanib 6 , ranibizumab 7 8 , and aflibercept 9 10 .…”

Intrinsically Photosensitive Retinal Ganglion Cell Function, Sleep Efficiency and Depression in Advanced Age-Related Macular Degeneration

“…[24][25][26]70,71 Of the AMD patients in this study, 28% had either met criteria for risk of depression or were taking antidepressant medication. However, no correlation between ipRGC function and depression in advanced AMD was found, hence our hypothesis for a causal relationship between the dysfunction of these cells and altered signaling to mood centers could not be evaluated in this sample.…”