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

Monica Varano,1 Nicole Eter,2 Steve Winyard,3 Kim U Wittrup-Jensen,4 Rafael Navarro,5 Julie Heraghty6 On behalf of the wAMD Patient and Caregiver Survey Committee members 1Department of Ophthalmology, Fondazione GB Bietti-IRCCS, Rome, Italy; 2Department of Ophthalmology, University of Mün...

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Autores principales:	Varano M, Eter N, Winyard S, Wittrup-Jensen KU, Navarro R, Heraghty J
Formato:	article
Lenguaje:	EN
Publicado:	Dove Medical Press 2016
Materias:	wet age-related macular degeneration (wAMD) anti-VEGF agents wAMD Patient and Caregiver Survey patient-reported outcomes Ophthalmology RE1-994
Acceso en línea:	https://doaj.org/article/d1157d5b5e8c4db5a356369b60ca8e3f
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spelling	oai:doaj.org-article:d1157d5b5e8c4db5a356369b60ca8e3f2021-12-02T07:15:28ZThe emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey1177-5483https://doaj.org/article/d1157d5b5e8c4db5a356369b60ca8e3f2016-02-01T00:00:00Zhttps://www.dovepress.com/the-emotional-and-physical-impact-of-wet-age-related-macular-degenerat-peer-reviewed-article-OPTHhttps://doaj.org/toc/1177-5483Monica Varano,1 Nicole Eter,2 Steve Winyard,3 Kim U Wittrup-Jensen,4 Rafael Navarro,5 Julie Heraghty6 On behalf of the wAMD Patient and Caregiver Survey Committee members 1Department of Ophthalmology, Fondazione GB Bietti-IRCCS, Rome, Italy; 2Department of Ophthalmology, University of Münster, Münster, Germany; 3Department of Policy and Campaigns, Royal National Institute of Blind People, London, UK; 4Bayer Pharma AG, Berlin, Germany; 5Instituto de Microcirugia Ocular, Barcelona, Spain; 6Macular Disease Foundation Australia, Sydney, NSW, Australia 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. Keywords: wet age-related macular degeneration, anti-vascular endothelial growth factor agents, wAMD Patient and Caregiver Survey, patient-reported outcomesVarano MEter NWinyard SWittrup-Jensen KUNavarro RHeraghty JDove Medical Pressarticlewet age-related macular degeneration (wAMD)anti-VEGF agentswAMD Patient and Caregiver Surveypatient-reported outcomesOphthalmologyRE1-994ENClinical Ophthalmology, Vol 2016, Iss Issue 1, Pp 257-267 (2016)
institution	DOAJ
collection	DOAJ
language	EN
topic	wet age-related macular degeneration (wAMD) anti-VEGF agents wAMD Patient and Caregiver Survey patient-reported outcomes Ophthalmology RE1-994
spellingShingle	wet age-related macular degeneration (wAMD) anti-VEGF agents wAMD Patient and Caregiver Survey patient-reported outcomes Ophthalmology RE1-994 Varano M Eter N Winyard S Wittrup-Jensen KU Navarro R Heraghty J The emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey
description	Monica Varano,1 Nicole Eter,2 Steve Winyard,3 Kim U Wittrup-Jensen,4 Rafael Navarro,5 Julie Heraghty6 On behalf of the wAMD Patient and Caregiver Survey Committee members 1Department of Ophthalmology, Fondazione GB Bietti-IRCCS, Rome, Italy; 2Department of Ophthalmology, University of Münster, Münster, Germany; 3Department of Policy and Campaigns, Royal National Institute of Blind People, London, UK; 4Bayer Pharma AG, Berlin, Germany; 5Instituto de Microcirugia Ocular, Barcelona, Spain; 6Macular Disease Foundation Australia, Sydney, NSW, Australia 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. Keywords: wet age-related macular degeneration, anti-vascular endothelial growth factor agents, wAMD Patient and Caregiver Survey, patient-reported outcomes
format	article
author	Varano M Eter N Winyard S Wittrup-Jensen KU Navarro R Heraghty J
author_facet	Varano M Eter N Winyard S Wittrup-Jensen KU Navarro R Heraghty J
author_sort	Varano M
title	The emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey
title_short	The emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey
title_full	The emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey
title_fullStr	The emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey
title_full_unstemmed	The emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey
title_sort	emotional and physical impact of wet age-related macular degeneration: findings from the wamd patient and caregiver survey
publisher	Dove Medical Press
publishDate	2016
url	https://doaj.org/article/d1157d5b5e8c4db5a356369b60ca8e3f
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The emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey

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