ArticleBMJ open2013
'I'd like to know what causes it, you know, anything I've done?' Are we meeting the information and support needs of patients with macular degeneration? A qualitative study.
Article in BMJ open, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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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.
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.
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Who cites it
4 citing papers in PubMed.
- Looking beyond the eyes of the patient: The importance of effective communication in the treatment of age-related macular degeneration.Acta ophthalmologica · 2025Article
- Patient Perspectives in Geographic Atrophy (GA): Exploratory Qualitative Research to Understand the Impact of GA for Patients and Their Families.The British and Irish orthoptic journal · 2019Article
- Article
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Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo examine patients' experiences of information and support provision for age-related macular degeneration (AMD) in the UK. STUDY
designExploratory qualitative study investigating patient experiences of healthcare consultations and living with AMD over 18 months.
settingSpecialist eye clinics at a Birmingham hospital.
participants13 patients diagnosed with AMD.
main outcome measuresAnalysis of patients' narratives to identify key themes and issues relating to information and support needs.
resultsInformation was accessed from a variety of sources. There was evidence of clear information deficits prior to diagnosis, following diagnosis and ongoing across the course of the condition. Patients were often ill informed and therefore unable to self-advocate and recognise when support was needed, what support was available and how to access support.
conclusionsAMD patients have a variety of information needs that are variable across the course of the condition. Further research is needed to determine whether these experiences are typical and identify ways of translating the guidelines into practice. Methods of providing information need to be investigated and improved for this patient group.
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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.