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A Patient Perspective on Quality of Life with wAMD: A Podcast
Jill Adelman1, Alexander Foss2
1, New Jersey, USA.
Abstract:
Podcast Video (MP4 420470 KB) 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.
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