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

Monica Varano, Nicole Eter, Steve Winyard, Kim U. Wittrup-Jensen, Rafael Navarro, Julie Heraghty

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)257-267
Number of pages11
JournalClinical Ophthalmology
Volume10
DOIs
Publication statusPublished - Feb 3 2016

Keywords

  • Anti-vascular endothelial growth factor agents
  • Patient-reported outcomes
  • WAMD Patient and Caregiver Survey
  • Wet age-related macular degeneration

ASJC Scopus subject areas

  • Ophthalmology

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