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

OBJECTIVES: This 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). METHODS: The survey was performed in nine countries using an ophthalmologist-devised questionnaire. RESULTS: A 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. CONCLUSION: wAMD 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.

Current barriers to treatment for wet age-related macular degeneration (wAMD): findings from the wAMD patient and caregiver survey.

PURPOSE: A cross-sectional survey to evaluate the current management of wet age-related macular degeneration (wAMD) and to identify barriers to treatment from a patient and caregiver perspective. METHODS: An ophthalmologist-devised questionnaire was given to a global cohort of patients who were receiving (or had previously received) antivascular endothelial growth factor injections and to caregivers (paid and unpaid) to evaluate the impact of wAMD on their lives. RESULTS: Responders included 910 patients and 890 caregivers; wAMD was diagnosed in both eyes in 45% of patients, and 64% had been receiving injections for > 1 year. Many caregivers were a child/grandchild (47%) or partner (23%) of the patient; only 7% were professional caregivers. Most (73%) patients visited a health care professional within 1 month of experiencing vision changes and 54% began treatment immediately. Most patients and caregivers reported a number of obstacles in managing wAMD, including the treatment itself (35% and 39%, respectively). Sixteen percent of patients also missed a clinic visit. CONCLUSION: Most patients seek medical assistance promptly for a change in vision; however, about a quarter of them do not. This highlights a lack of awareness surrounding eye health and the impact of a delayed diagnosis. Most patients and caregivers identified a number of obstacles in managing wAMD.

An estimation of the worldwide economic and health burden of visual impairment.

This study aims to provide a rigorous estimate of the worldwide costs of visual impairment (VI), and the associated health burden. The study used a prevalence-based model. Prevalence rates for mild VI (visual acuity (VA) worse than 6/12 but not worse than 6/18), moderate VI (VA worse than 6/18 but not worse than 6/60) and blindness (VA worse than 6/60) were applied to population forecasts for each World Health Organisation (WHO) subregion. The limited available country cost data were extrapolated between subregions using economic and population health indicators. Age and gender subgroup population numbers were derived from United Nations' data. Costs and the health burden of VI were estimated for each world subregion using published disease prevalence rates, health care expenditures and other economic data. The study includes direct health care costs, indirect costs and the health burden of VI. The total cost of VI globally was estimated at $3 trillion in 2010, of which $2.3 trillion was direct health costs. This burden is projected to increase by approximately 20% by 2020. VI is associated with a considerable disease burden. Unless steps are taken to reduce prevalence through prevention and treatment, this burden will increase alongside global population growth.