title: Divergence in the lived experience of people with macular degeneration.
abstract: OBJECTIVE
  The aim of this study was to understand people's experience with age-related macular degeneration (AMD) in light of new treatment successes.
  
  
  METHODS
  An interpretive qualitative methodology was used to facilitate understanding of the experience of people with AMD. Rich in-depth data were collected using focus groups and individual interviews. Thematic analysis of the data occurred through the processes of line-by-line coding, aggregation, and theme development using the NVivo 10 software.
  
  
  RESULTS
  A total of 4 focus groups and 16 individual interviews were conducted with 34 people (median age = 81 years; range = 56 to 102 years; 19 females) with AMD. Four major themes arose from the narratives of the participants: cautious optimism, enduring, adaptation, and profound loss. Cautious optimism resonated for participants who had received successful treatment and stabilization of AMD. Enduring emerged as participants with exudative AMD described an ongoing need for invasive and frequent treatments (anti-vascular endothelial growth factor injections) that maintained their vision. Adaptation was evident in the narratives of all participants and was directly related to the physical and psychological limitations that were a consequence of visual disability. Profound loss encompassed both physical and emotional aspects of deteriorating vision and was most evident in patients for whom treatment had failed or had not been considered appropriate for their disease.
  
  
  CONCLUSIONS
  The findings of this study shed new light on the influence of underlying pathology, disease trajectory, and success of new treatments on quality of life of people living with AMD. Optimism toward maintaining vision in the presence of exudative AMD was described by participants, moderated by ongoing caution and a need for endurance of frequent and often problematic intravitreal treatments. These findings add a deeper understanding of this complex and life-changing experience.
authors: *PhD †FRANZCO ‡PhD, FAAO School of Nursing and Midwifery, Flinders University, Bedford Park, South Australia, Australia (CMc), NH&MRC Centre for Clinical Eye Research, Discipline of Optometry and Vision Science Flinders University, Bedford Park, South Australia, Australia (JK, KP), South Australian Institute of Ophthalmology and Discipline of Ophthalmology and Visual Sciences, Royal Adelaide Hospital, University of Adelaide, Adelaide, South Australia, Australia (JSG), and Ophthalmology Network, The Queen Elizabeth Hospital, Adelaide, South Australia, Australia (JSG).
authors: Christine
authors: C
authors: McCloud
authors: Jyoti
authors: J
authors: Khadka
authors: Jagjit Singh
authors: JS
authors: Gilhotra
authors: Konrad
authors: K
authors: Pesudovs
mesh_terms: D000203:Activities of Daily Living; D000368:Aged; D000369:Aged, 80 and over; D020533:Angiogenesis Inhibitors / Q000627:therapeutic use; D005260:Female; D017144:Focus Groups; D057092:Geographic Atrophy / Q000188:drug therapy / Q000523:psychology*; D006801:Humans; D058449:Intravitreal Injections; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D042461:Vascular Endothelial Growth Factor A / Q000037:antagonists & inhibitors; D015354:Vision, Low / Q000523:psychology*; D019987:Persons with Visual Disabilities / Q000523:psychology*; D057135:Wet Macular Degeneration / Q000188:drug therapy / Q000523:psychology*
chemical_list: D020533:Angiogenesis Inhibitors; C467484:VEGFA protein, human; D042461:Vascular Endothelial Growth Factor A