Living with Geographic Atrophy: An Ethnographic Study
Sobha Sivaprasad1, Elizabeth A Tschosik2, Robyn H Guymer3,4
1NIHR Moorfields Biomedical Research Centre, London, UK.
Ophthalmology and Therapy
|February 2, 2019
Summary
Geographic atrophy (GA), an advanced form of age-related macular degeneration (AMD), significantly impacts patients' daily lives, affecting activities, emotions, and finances. This study highlights the need for further research into patient experiences with GA.
Area of Science:
- Ophthalmology
- Patient-reported outcomes
- Qualitative research
Background:
- Geographic atrophy (GA) is an advanced stage of age-related macular degeneration (AMD).
- The patient perspective on the impact of GA on daily functioning is not well understood.
- Understanding patient experiences is crucial for developing targeted support and interventions.
Purpose of the Study:
- To explore and understand the impact of bilateral GA secondary to AMD on patients' daily functioning.
- To identify specific domains of life affected by GA from the patient's viewpoint.
- To gather qualitative data on the lived experiences of individuals with GA.
Main Methods:
- An ethnographic study design was employed.
- Data collection involved direct observation of regular activities at home and semi-structured interviews.
- Video recordings and field notes were used, with subsequent analysis of coded video transcripts.
Main Results:
- GA significantly impacted daily living activities, including reading, driving, and leisure.
- Emotional consequences such as frustration and fear of blindness were reported by many participants.
- Financial and social/leisure activities were also negatively affected, with similar impacts across different visual acuity levels.
Conclusions:
- This study addresses a gap in patient-focused research regarding the impact of GA.
- GA demonstrably affects multiple facets of patients' day-to-day functioning.
- Further qualitative and quantitative research is recommended to quantify patient experiences and explore correlations with visual acuity.
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