ArticleThe British journal of ophthalmology2002
Perceived quality of health care in macular disease: a survey of members of the Macular Disease Society.
Article in The British journal of ophthalmology, 2002. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 42 citations in OpenAlex.
- Quality of life in age-related macular degeneration: a review of the literature.Health and quality of life outcomes · 2006Pooled it
- An enhanced educational intervention for improving confidence in the eye health benefits of appropriate care for age-related macular degeneration: a randomized controlled trial.Health education research · 2025Trial
- Enhanced text spacing improves reading performance in individuals with macular disease.PloS one · 2013Trial
- Impact of a Patient Support Program on Patient Beliefs About Neovascular Age-Related Macular Degeneration and Persistence to Anti-Vascular Endothelial Growth Factor Therapy.Patient preference and adherence · 2021Article
- A qualitative exploration of Australian eyecare professional perspectives on Age-Related Macular Degeneration (AMD) care.PloS one · 2020Article
- Patient-reported reasons for delay in diagnosis of age-related macular degeneration: a national survey.BMJ open ophthalmology · 2019Article
- Exploring factors predicting changes in patients' expectations and psychosocial issues during the course of treatment with intravitreal injections for wet age-related macular degeneration.Eye (London, England) · 2018Article
- Article
- Design and development of the MacTSQ measure of satisfaction with treatment for macular conditions used within the IVAN trial.Journal of patient-reported outcomes · 2017Article
- Article
- Negative outcome Charles Bonnet syndrome.The British journal of ophthalmology · 2014Article
- Article
- [Quality of life by limited vision in old age: the example of age-related macula degeneration].Der Ophthalmologe : Zeitschrift der Deutschen Ophthalmologischen Gesellschaft · 2008Article
- In-patient management and treatment satisfaction after intravitreous plasminogen activator injection.Graefe's archive for clinical and experimental ophthalmology = Albrecht von Graefes Archiv fur klinische und experimentelle Ophthalmologie · 2006Article
- +Psychometric evaluation of the MacDQoL individualised measure of the impact of macular degeneration on quality of life.Health and quality of life outcomes · 2005Article
- Design of an individualised measure of the impact of macular disease on quality of life (the MacDQoL).Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2004Article
- Practical solutions to service shortcomings in the care of older people: the case for professional collaboration.The British journal of ophthalmology · 2004Article
- Management of age related macular degeneration: still room for improvement.The British journal of ophthalmology · 2003Article
Corrections and comments
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Authors and funding
5 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
aimTo investigate the experiences of people with macular disease within the British healthcare system.
methodThe Macular Disease Society Questionnaire, a self completion questionnaire designed to survey the experiences of people with macular disease, was sent to 2000 randomly selected members of the Macular Disease Society. The questionnaire incorporated items about people's experiences with health professionals and the information and support provided by them at the time of diagnosis and thereafter.
resultsOver 50% thought their consultant eye specialist was not interested in them as a person and 40% were dissatisfied with their diagnostic consultation. 185 people thought their general practitioner (GP) was well informed about macular disease but twice as many people thought their GP was not well informed. About an equal number of people thought their GP was supportive as those who thought their GP was not supportive. A total of 1247 people were told "nothing can be done to help with your macular disease." A number of negative emotional reactions were experienced by those people as a result, with 61% of them reporting feeling anxious or depressed. Of 282 people experiencing visual hallucinations after diagnosis with macular disease, only 20.9% were offered explanations for them.
conclusionsMany people with macular disease have unsatisfactory experiences of the healthcare system. Many of the reasons for dissatisfaction could be resolved by healthcare professionals if they were better informed about macular disease and had a better understanding of and empathy with patients' experiences.
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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.