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 the ‘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 included 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.
Highlights
Age-related macular degeneration (AMD) is the major cause of blindness for the older population in the developed world
Best corrected visual acuity (BCVA) may not be a good reflection on the impact Geographic Atrophy (GA) has on the individual, as some people can have good levels of vision before the fovea is involved, while still experiencing problems related to other aspects of visual function (Sadda et al 2016)
Sampling and recruitment Participants were recruited via Sheffield Teaching Hospitals NHS Foundation Trust (STH), United Kingdom (UK), through two sources: new patients attending clinic appointments and an existing database of patients with GA
Summary
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. 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. The incidence of GA increases exponentially with age (Rudnicka et al 2012; Wong et al 2014) In a systematic review and metaanalysis of qualitative research Bennion et al identified six themes relating to emotional impact of AMD; functional
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