Evidence map›Paper›PMID 30706242›Full record

ArticleOphthalmology and therapy2019

Living with Geographic Atrophy: An Ethnographic Study.

Sobha Sivaprasad, Elizabeth A Tschosik, Robyn H Guymer, Audrey Kapre, Ivan J Suñer, Antonia M Joussen, Paolo Lanzetta, Daniela Ferrara

Registry-linked trialOpen access · goldAbstract read
In one paragraph

Article in Ophthalmology and therapy, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06499571 (G.A.L.T.O.S. Geographic Atrophy Long-Terms Outcomes Study), which is not on this map. Cited by 25 papers.

0numbers the graph read from it
0cells of the map it votes in
25citing papers in PubMed
3.1field-weighted citation impact, top 10% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT06499571 completednot on this mapstarted 2022, after this paper: background citation

G.A.L.T.O.S. Geographic Atrophy Long-Terms Outcomes Study: An Ambispective Noninterventional Study to Describe the Patient Demographics and Outcomes of Patients With Geographic Atrophy (GA) Secondary to AMD in Clinical Practice

TypeobservationalSponsorApellis Pharmaceuticals, Inc.Ran2022 to 2023Enrolled255ConditionsGeographic Atrophy
3 · Its place in the literature

Who cites it

25 citing papers in PubMed, 36 citations in OpenAlex.

  1. Drug Delivery Technologies for the Treatment of Age-Related Macular Degeneration.Advanced science (Weinheim, Baden-Wurttemberg, Germany) · 2025
    Review
  2. Review
  3. Observational
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  15. The influence of the topographic location of geographic atrophy on vision-related quality of life in nonexudative age-related macular degeneration.Graefe's archive for clinical and experimental ophthalmology = Albrecht von Graefes Archiv fur klinische und experimentelle Ophthalmologie · 2023
    Article
  16. Identifying the content for an item bank and computerized adaptive testing system to measure the impact of age-related macular degeneration on health-related quality of life.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022
    Article
  17. Article
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  19. Investigational Agents in Development for the Treatment of Geographic Atrophy Secondary to Age-Related Macular Degeneration.BioDrugs : clinical immunotherapeutics, biopharmaceuticals and gene therapy · 2021
    Review
  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors at 6 institutions in 5 countries.

Sobha SivaprasadNIHR Moorfields Biomedical Research Centre, London, UK.
Elizabeth A TschosikDepartment of Patient-Centered Outcomes Research, Genentech, Inc., a Member of the Roche Group, South San Francisco, CA, USA. tschosik.elizabeth@gene.com.
Robyn H GuymerCentre for Eye Research Australia, The Royal Victorian Eye and Ear Hospital, Melbourne, Australia.ORCID http://orcid.org/0000-0002-9441-4356
Audrey KapreDepartment of Patient-Centered Outcomes Research, Genentech, Inc., a Member of the Roche Group, South San Francisco, CA, USA.
Ivan J SuñerRetina Associates of Florida, Tampa, FL, USA.
Antonia M JoussenDepartment of Ophthalmology, Charité - Universitätsmedizin Berlin, Berlin, Germany.
Paolo LanzettaDepartment of Medicine - Ophthalmology, University of Udine, Udine, Italy.
Daniela FerraraClinical Science Ophthalmology, Genentech, Inc., a Member of the Roche Group, South San Francisco, CA, USA.
Roche (United States) · USCharité - Universitätsmedizin Berlin · DENIHR Moorfields Biomedical Research Centre · GBRetina Associates of Florida · USThe University of Melbourne · AUUniversity of Udine · IT

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionThe specific impact from the patient's perspective of geographic atrophy (GA), an advanced form of age-related macular degeneration (AMD), is not well understood.

methodsAn ethnographic study was conducted to understand the impact of bilateral GA secondary to AMD on daily functioning by observing regular activities performed at home and through semi-structured interviews. Eligible subjects had a definitive GA diagnosis, including presence of drusen, GA lesion size of at least one disc area in the better-seeing eye, and no other confounding ophthalmologic diagnosis. Data were collected via video recordings and field notes, and analyzed by coding video transcripts.

resultsFunctional impact domains affecting more than two of the 16 subjects from the United Kingdom, United States, or Germany were activities of daily living (difficulty reading, n = 16; driving, n = 12; and watching movies, television, or theater, n = 11), emotional (frustration, and fear of blindness, n = 7 each), social/leisure (interference with hobbies, n = 8, and diminished social activities, n = 4), physical (n = 4), and financial (n = 10). Subjects with a best-corrected visual acuity (BCVA) of 20/100 or better in the better-seeing eye (n = 10) reported similar functional impacts to those with a BCVA of worse than 20/100 in their better-seeing eye (n = 5).

conclusionThis study helps address gaps in patient-focused research into GA, which negatively impacts the day-to-day functioning of patients. Larger qualitative and quantitative studies are needed to quantify patient experiences and assess the correlation between BCVA score and impact of GA.

fundingF. Hoffmann-La Roche Ltd.

Indexed as

Activities of daily livingAge-related macular degenerationEthnographyGeographic atrophyQuality of lifeVisual acuity

Identifiers

PMID30706242
PMCPMC6393253
OpenAlexW2914558612

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.