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. 2021 Sep;10(3):367-382.
doi: 10.1007/s40123-021-00352-3. Epub 2021 Jun 5.

Seeing Beyond Anatomy: Quality of Life with Geographic Atrophy

Dolores Caswell  1   2 , William Caswell  3 , Jill Carlton  4
Affiliations

Seeing Beyond Anatomy: Quality of Life with Geographic Atrophy

Dolores Caswell et al. Ophthalmol Ther. 2021 Sep.

Abstract

Quality of life (QoL) is a complex idea without a clear consensus definition. Generally speaking, QoL refers to several subjective measures of wellbeing that vary by individual and circumstance. QoL can decline noticeably as a disease progresses. This is particularly true for geographic atrophy (GA), an advanced form of age-related macular degeneration. GA leads to vision loss for which there is no currently approved pharmacological treatment. There is a lack of qualitative, patient-driven research on QoL in GA. There is also limited information available to both patients and physicians about GA, existing support groups and available assistive technologies. To address this, we have collated the experiences of a person with GA and those of her partner and carer with the current literature on QoL in GA. We have also outlined some of the wide range of developing technologies available to help people with GA carry out daily tasks and hobbies. It is clear that support, whether through informal or structured care, is vital to the wellbeing of people with GA. Despite this, the general public are often unaware of care work, which may result in this integral role being undervalued and under acknowledged. Furthermore, it is apparent that the general public have fundamental misunderstandings around what vision loss entails and are unaware that blindness is a vast spectrum. This feeds into the seemingly paradoxical mix of isolation and dependence on others that often results from GA and vision loss. Through this qualitative examination of a patient's experiences, we hope to inform and educate both patients and physicians about GA as well as precipitate discussion around the frameworks that should be in place to support both newly diagnosed and long-term patients with GA and other retinal diseases. Seeing beyond anatomy: quality of life with geographic atrophy (WMV 29479 kb).

Keywords: Age-related macular degeneration; Geographic atrophy; Patient perspective; Qualitative; Quality of life; Retina.

Plain language summary

Asking someone about their ‘quality of life’ is one way to understand their general wellbeing. Quality of life can mean different things to different people. For some people it may mean being able to do what they want to. For others it may include feelings such as happiness. Diseases that cause people to lose their vision can have a very big impact on quality of life. Geographic atrophy is an eye disease that leads to loss of vision and has no cure. In this article, Dolores, a person with geographic atrophy, Bill, her husband and carer, and Jill, a quality of life researcher, discuss how geographic atrophy can change quality of life. Vision loss often means that people are unable to keep up their hobbies and do daily tasks, like shopping or cooking. Learning to use smartphone apps and gadgets can help many people with their hobbies and tasks. Feeling alone also makes quality of life for people with geographic atrophy worse. The help and understanding of others—including friends, family and doctors—are very important. Treatment plans for patients with vision loss need to consider all parts of a patient’s life. Training for doctors should continue to emphasise that people with geographic atrophy are more than just eyes that cannot be treated.

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