Patient perspectives in geographic atrophy (GA) : exploratory qualitative research to understand the impact of GA for patients and their families

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.