Carlton, J., Barnes, S. orcid.org/0000-0003-3279-6368 and Haywood, A. (2019) Patient perspectives in geographic atrophy (GA) : exploratory qualitative research to understand the impact of GA for patients and their families. British and Irish Orthoptic Journal, 15 (1). pp. 133-141. ISSN 1743-9868
Abstract
Background
Age-related macular degeneration (AMD) is the major cause of blindness for the older population in the developed world. Geographic atrophy (GA) is an advanced form of AMD. This progressive degenerative disease causes loss of visual function but unlike exudative AMD there are currently no approved therapeutic treatments for GA. Instead management of the condition is through supportive care. The aim of this study was to conduct exploratory qualitative research to develop a further understanding specifically of the impact of geographic atrophy (GA) on the quality of life for both patients and their families, and to explore the resources GA patients most frequently access.
Methods
Two focus groups were conducted where participants were assigned to “better” or “worse” group based upon their level of visual acuity. The data were analysed using the principles of thematic analysis. Transcripts were coded using an a priori framework. Emerging themes and subthemes were added, and transcripts recoded to reflect this. Transcripts were coded by one researcher, and the emerging themes and subthemes discussed and agreed prior to transcript recoding.
Results
Nine participants were recruited to the study (n=5 “better group” and n=4 “worse group”). Six overarching themes were identified. These are: experience of symptoms and understanding of GA; impact on activities; feelings and emotions; relationships and informal support; accessing formal support; and information needs.
Conclusion
Key findings indicated that: participants had little knowledge of the mechanisms of GA, but were aware of their prognosis; activities impacted by GA were management of daily activities and reading; emotions experienced included fear and frustration, and these frequently crossed over into their relationships with others; and access to formal support was mainly practical and information needs were largely unmet, with peer support being identified as important. Management of GA should include signposting to appropriate support agencies, such as low vision services and charities.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2019 The Authors. This is an open-access article distributed under the terms of the Creative Commons Attribution 4.0 International License (CC-BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. See http://creativecommons.org/licenses/by/4.0/ |
Keywords: | Geographic atrophy; quality of life; qualitative; focus group; age-related macular degeneration |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) > ScHARR - Sheffield Centre for Health and Related Research |
Funding Information: | Funder Grant number Roche Products Ltd N/A |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 07 Nov 2019 11:08 |
Last Modified: | 10 Dec 2019 12:58 |
Status: | Published |
Publisher: | White Rose University Press |
Refereed: | Yes |
Identification Number: | 10.22599/bioj.137 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:153222 |