Seeing beyond anatomy : quality of life with geographic atrophy

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.