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A Patient Perspective on Quality of Life with wAMD: A Podcast

Wet age-related macular degeneration (wAMD) is an advanced stage of AMD characterised by the rapid onset of acute vision loss. Vision loss limits daily activities, such as reading and driving, and therefore has a notable impact on quality of life. However, there is insufficient research focusing on...

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Detalles Bibliográficos
Autores principales: Adelman, Jill, Foss, Alexander
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9253223/
https://www.ncbi.nlm.nih.gov/pubmed/35687298
http://dx.doi.org/10.1007/s40123-022-00528-5
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author Adelman, Jill
Foss, Alexander
author_facet Adelman, Jill
Foss, Alexander
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description Wet age-related macular degeneration (wAMD) is an advanced stage of AMD characterised by the rapid onset of acute vision loss. Vision loss limits daily activities, such as reading and driving, and therefore has a notable impact on quality of life. However, there is insufficient research focusing on the patient perspective on wAMD and its effect on quality of life. In this podcast article, a person with wAMD and an expert physician discuss the patient experience of wAMD diagnosis, disease progression and treatment, and the most important aspects of quality of life that should be preserved or improved. wAMD can progress extremely quickly, but diagnostic guidelines vary by region, so the words ‘macular degeneration’ are not heard by some patients until long after vision has been lost, if at all. The potential impact of wAMD on a person’s life may never be explained, leading some people to rely on their own research. Therefore, patients may be unprepared for the subsequent effect on their lives and careers. The support of family is critical for maintaining quality of life. Working with a physician who understands an individual’s communication preferences is also important for ensuring treatment adherence and maintaining good mental health; treatment for wAMD is typically administered via intravitreal injection, which may be alarming to patients who have not been informed well by healthcare professionals. Adapting to vision loss is key to maintaining quality of life, and magnification is especially useful for patients with wAMD. Furthermore, modern technology, such as smart phones and smart watches, greatly improves the accessibility of daily tasks. However, what is most important to patients is access to information about their disease—whether via an advocate, self-led research or a healthcare professional. Crucially, physicians must ensure that they speak to their patients in an informative but accessible manner. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40123-022-00528-5.
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spelling pubmed-92532232022-07-06 A Patient Perspective on Quality of Life with wAMD: A Podcast Adelman, Jill Foss, Alexander Ophthalmol Ther Commentary Wet age-related macular degeneration (wAMD) is an advanced stage of AMD characterised by the rapid onset of acute vision loss. Vision loss limits daily activities, such as reading and driving, and therefore has a notable impact on quality of life. However, there is insufficient research focusing on the patient perspective on wAMD and its effect on quality of life. In this podcast article, a person with wAMD and an expert physician discuss the patient experience of wAMD diagnosis, disease progression and treatment, and the most important aspects of quality of life that should be preserved or improved. wAMD can progress extremely quickly, but diagnostic guidelines vary by region, so the words ‘macular degeneration’ are not heard by some patients until long after vision has been lost, if at all. The potential impact of wAMD on a person’s life may never be explained, leading some people to rely on their own research. Therefore, patients may be unprepared for the subsequent effect on their lives and careers. The support of family is critical for maintaining quality of life. Working with a physician who understands an individual’s communication preferences is also important for ensuring treatment adherence and maintaining good mental health; treatment for wAMD is typically administered via intravitreal injection, which may be alarming to patients who have not been informed well by healthcare professionals. Adapting to vision loss is key to maintaining quality of life, and magnification is especially useful for patients with wAMD. Furthermore, modern technology, such as smart phones and smart watches, greatly improves the accessibility of daily tasks. However, what is most important to patients is access to information about their disease—whether via an advocate, self-led research or a healthcare professional. Crucially, physicians must ensure that they speak to their patients in an informative but accessible manner. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40123-022-00528-5. Springer Healthcare 2022-06-10 2022-08 /pmc/articles/PMC9253223/ /pubmed/35687298 http://dx.doi.org/10.1007/s40123-022-00528-5 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by-nc/4.0/Open AccessThis article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Commentary
Adelman, Jill
Foss, Alexander
A Patient Perspective on Quality of Life with wAMD: A Podcast
title A Patient Perspective on Quality of Life with wAMD: A Podcast
title_full A Patient Perspective on Quality of Life with wAMD: A Podcast
title_fullStr A Patient Perspective on Quality of Life with wAMD: A Podcast
title_full_unstemmed A Patient Perspective on Quality of Life with wAMD: A Podcast
title_short A Patient Perspective on Quality of Life with wAMD: A Podcast
title_sort patient perspective on quality of life with wamd: a podcast
topic Commentary
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9253223/
https://www.ncbi.nlm.nih.gov/pubmed/35687298
http://dx.doi.org/10.1007/s40123-022-00528-5
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