Living with Geographic Atrophy: An Ethnographic Study
Abstract Introduction The specific impact from the patient’s perspective of geographic atrophy (GA), an advanced form of age-related macular degeneration (AMD), is not well understood. Methods An ethnographic study was conducted to understand the impact of bilateral GA secondary to AMD on daily func...
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doaj-7a29e3b59cc24602aa21f1f1f7ffd88a2020-11-25T02:04:23ZengAdis, Springer HealthcareOphthalmology and Therapy2193-82452193-65282019-01-018111512410.1007/s40123-019-0160-3Living with Geographic Atrophy: An Ethnographic StudySobha Sivaprasad0Elizabeth A. Tschosik1Robyn H. Guymer2Audrey Kapre3Ivan J. Suñer4Antonia M. Joussen5Paolo Lanzetta6Daniela Ferrara7NIHR Moorfields Biomedical Research CentreDepartment of Patient-Centered Outcomes Research, Genentech, Inc., a Member of the Roche GroupCentre for Eye Research Australia, The Royal Victorian Eye and Ear HospitalDepartment of Patient-Centered Outcomes Research, Genentech, Inc., a Member of the Roche GroupRetina Associates of FloridaDepartment of Ophthalmology, Charité - Universitätsmedizin BerlinDepartment of Medicine – Ophthalmology, University of UdineClinical Science Ophthalmology, Genentech, Inc., a Member of the Roche GroupAbstract Introduction The specific impact from the patient’s perspective of geographic atrophy (GA), an advanced form of age-related macular degeneration (AMD), is not well understood. Methods An ethnographic study was conducted to understand the impact of bilateral GA secondary to AMD on daily functioning by observing regular activities performed at home and through semi-structured interviews. Eligible subjects had a definitive GA diagnosis, including presence of drusen, GA lesion size of at least one disc area in the better-seeing eye, and no other confounding ophthalmologic diagnosis. Data were collected via video recordings and field notes, and analyzed by coding video transcripts. Results Functional impact domains affecting more than two of the 16 subjects from the United Kingdom, United States, or Germany were activities of daily living (difficulty reading, n = 16; driving, n = 12; and watching movies, television, or theater, n = 11), emotional (frustration, and fear of blindness, n = 7 each), social/leisure (interference with hobbies, n = 8, and diminished social activities, n = 4), physical (n = 4), and financial (n = 10). Subjects with a best-corrected visual acuity (BCVA) of 20/100 or better in the better-seeing eye (n = 10) reported similar functional impacts to those with a BCVA of worse than 20/100 in their better-seeing eye (n = 5). Conclusion This study helps address gaps in patient-focused research into GA, which negatively impacts the day-to-day functioning of patients. Larger qualitative and quantitative studies are needed to quantify patient experiences and assess the correlation between BCVA score and impact of GA. Funding F. Hoffmann-La Roche Ltd.http://link.springer.com/article/10.1007/s40123-019-0160-3Activities of daily livingAge-related macular degenerationEthnographyGeographic atrophyQuality of lifeVisual acuity |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Sobha Sivaprasad Elizabeth A. Tschosik Robyn H. Guymer Audrey Kapre Ivan J. Suñer Antonia M. Joussen Paolo Lanzetta Daniela Ferrara |
spellingShingle |
Sobha Sivaprasad Elizabeth A. Tschosik Robyn H. Guymer Audrey Kapre Ivan J. Suñer Antonia M. Joussen Paolo Lanzetta Daniela Ferrara Living with Geographic Atrophy: An Ethnographic Study Ophthalmology and Therapy Activities of daily living Age-related macular degeneration Ethnography Geographic atrophy Quality of life Visual acuity |
author_facet |
Sobha Sivaprasad Elizabeth A. Tschosik Robyn H. Guymer Audrey Kapre Ivan J. Suñer Antonia M. Joussen Paolo Lanzetta Daniela Ferrara |
author_sort |
Sobha Sivaprasad |
title |
Living with Geographic Atrophy: An Ethnographic Study |
title_short |
Living with Geographic Atrophy: An Ethnographic Study |
title_full |
Living with Geographic Atrophy: An Ethnographic Study |
title_fullStr |
Living with Geographic Atrophy: An Ethnographic Study |
title_full_unstemmed |
Living with Geographic Atrophy: An Ethnographic Study |
title_sort |
living with geographic atrophy: an ethnographic study |
publisher |
Adis, Springer Healthcare |
series |
Ophthalmology and Therapy |
issn |
2193-8245 2193-6528 |
publishDate |
2019-01-01 |
description |
Abstract Introduction The specific impact from the patient’s perspective of geographic atrophy (GA), an advanced form of age-related macular degeneration (AMD), is not well understood. Methods An ethnographic study was conducted to understand the impact of bilateral GA secondary to AMD on daily functioning by observing regular activities performed at home and through semi-structured interviews. Eligible subjects had a definitive GA diagnosis, including presence of drusen, GA lesion size of at least one disc area in the better-seeing eye, and no other confounding ophthalmologic diagnosis. Data were collected via video recordings and field notes, and analyzed by coding video transcripts. Results Functional impact domains affecting more than two of the 16 subjects from the United Kingdom, United States, or Germany were activities of daily living (difficulty reading, n = 16; driving, n = 12; and watching movies, television, or theater, n = 11), emotional (frustration, and fear of blindness, n = 7 each), social/leisure (interference with hobbies, n = 8, and diminished social activities, n = 4), physical (n = 4), and financial (n = 10). Subjects with a best-corrected visual acuity (BCVA) of 20/100 or better in the better-seeing eye (n = 10) reported similar functional impacts to those with a BCVA of worse than 20/100 in their better-seeing eye (n = 5). Conclusion This study helps address gaps in patient-focused research into GA, which negatively impacts the day-to-day functioning of patients. Larger qualitative and quantitative studies are needed to quantify patient experiences and assess the correlation between BCVA score and impact of GA. Funding F. Hoffmann-La Roche Ltd. |
topic |
Activities of daily living Age-related macular degeneration Ethnography Geographic atrophy Quality of life Visual acuity |
url |
http://link.springer.com/article/10.1007/s40123-019-0160-3 |
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