Characterizing Patient Perceptions of Living with Geographic Atrophy: The Global Geographic Atrophy Insights Survey
Bibliographic record
Abstract
Sophie J Bakri,1,* Christian K Brinkmann,2,* Amy Mulvey,3 Kathy Steinberg,3 Roz Katz,4 Pooja Vatsyayan,4 Sujata P Sarda,5 Nancy M Holekamp6 1Department of Ophthalmology, Mayo Clinic, Rochester, MN, USA; 2Department of Ophthalmology, Dietrich-Bonhoeffer Hospital, Neubrandenburg, MV, Germany; 3Media and Communications Research, The Harris Poll, Chicago, IL, USA; 4Global Commercial Strategy, Ophthalmology, Apellis Pharmaceuticals Inc, Waltham, MA, USA; 5Health Economics and Outcomes Research, Apellis Pharmaceuticals Inc, Waltham, MA, USA; 6Retina Services, Pepose Vision Institute, Chesterfield, MO, USA*These authors contributed equally to this workCorrespondence: Sophie J Bakri, Department of Ophthalmology, Mayo Clinic, Rochester, MN, 55905, USA, Tel +1 507-284-3614, Email Bakri.Sophie@mayo.eduBackground: Geographic atrophy (GA) is an advanced form of age-related macular degeneration leading to irreversible vision loss and negative impacts on quality of life.Methods: To assess the experiences of living with GA, the Geographic Atrophy Insights Survey (GAINS) was conducted between October 12, 2021, and December 10, 2021, captured the responses of individuals ≥ 60 years with a self-reported GA diagnosis residing in the United States, Canada, Australia, and six European countries. Survey questions focused on the perceptions of individuals living with GA and covered six themes: speed of disease progression, effect on independence, impact on quality of life, emotional toll of GA, misconceptions and need for further education about GA, and clinician interactions. An exploratory comparison between participants with unilateral and bilateral GA was conducted.Results: The survey included 203 individuals with a mean age of 70 years; 42% had bilateral GA. Most respondents (77%) agreed (“strongly” or “somewhat agreed”) that GA impacted their vision faster than expected, and 68% agreed that it is hard to enjoy life fully the way they did before GA diagnosis. Regarding comparisons between individuals with bilateral and unilateral GA, both groups reported similar “major” or “moderate” negative impacts on their ability to drive (73% vs 75%, respectively), followed by the ability to read (66% vs 71%), and ability to travel as much as they would prefer (62% vs 62%). Among participants, 49% and 56% of respondents with bilateral and unilateral GA, respectively, reported major/moderate negative impacts on self-confidence and 40% of both cohorts reported major/moderate negative impacts on mental health.Conclusion: Our survey provides further insight on the burden experienced by individuals living with GA. We find similar responses between unilateral and bilateral GA groups, highlighting the impact GA may have on an individual’s quality of life even when only one eye is affected.Keywords: geographic atrophy, age-related macular degeneration, atrophic AMD, burden of illness, quality of life, patient survey
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.005 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".