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Patient-reported reasons for delay in diagnosis of age-related macular degeneration: a national survey
  1. Alice Parfitt1,2,
  2. Emily Boxell1,
  3. Winfried M Amoaku3,4,
  4. Clare Bradley2
  1. 1Health Psychology Research Unit, Royal Holloway University of London, Egham, UK
  2. 2Health Psychology Research Ltd, Royal Holloway University of London, Egham, UK
  3. 3Academic Ophthalmology, University of Nottingham, Nottingham, UK
  4. 4'B' Floor Eye and ENT Centre, University Hospital, QMC, Nottingham, UK
  1. Correspondence to Alice Parfitt; alice.parfitt.2012{at}live.rhul.ac.uk

Abstract

Objectives To investigate whether people with age-related macular degeneration (AMD) are able to self-detect symptoms and, if so, what symptoms they experience, from whom they first seek help, whether help is sought within the 1 week recommended by the Royal College of Ophthalmologists’ guidelines and reasons for any delay.

Methods and analysis A retrospective, cross-sectional survey design. Postal surveys were sent to 4000 members of the UK Macular Society. Inclusion criteria were participants aged >50 years at diagnosis of AMD with diagnosis after August 2008; criteria were met by 621 respondents. The main outcome was reasons for delays in diagnosis for wet AMD. Data were analysed using χ2 and conventional content analysis.

Results Only one third (n=199; 32%) of respondents were able to self-detect symptoms. In line with national guidance, over half (n=131; 64%) of those self-detecting symptoms sought help promptly. For those whose initial diagnosis was delayed more than 1 week, 27% had potentially treatable wet AMD requiring urgent treatment to prevent vision loss. Reasons for delay reflected individual & service-related issues, including AMD not being detected in the initial consultation, and individuals not perceiving the urgency for symptom investigation.

Conclusion In practice most patients sought help within 1 week; however, potentially sight-damaging delays occurred from symptom onset to diagnosis. Suggestions for reducing delay include increasing population awareness of AMD symptoms, the need for urgent detection and close monitoring for AMD and signposting patients to appropriate support services to ensure prompt detection of any future signs of wet AMD.

  • degeneration
  • macula
  • retina
  • public health

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Footnotes

  • Contributors CB prepared the research proposal in response to a request from the Macular Society for a follow-up survey. CB was responsible for supervision of the 2013 survey and the previous 1999 survey and associated studies. CB and EB designed the 2013 survey with valuable input from WMA. EB managed data preparation of the 2013 survey data with assistance from AP. EB and AP planned the present statistical analysis, carried out by AP. Qualitative data were coded by AP, EB and WMA and any discrepancies were discussed and resolved. AP drafted the manuscript, which was revised and approved by all authors. EB is the guarantor.

  • Funding EB was supported by a PhD studentship funded by the Macular Society to CB via Royal Holloway, University of London. The Macular Society reviewed and commented on the 2013 survey resulting in the addition of one item to be reported elsewhere. The Macular Society was responsible for printing and posting the surveys. AP was funded by Health Psychology Research Ltd, a spin-out company that licenses CB’s questionnaires and drives their linguistic validation into other languages.

  • Patient consent for publication Not required.

  • Ethics approval Ethical approval was obtained from the ethics committee of Royal Holloway, University of London (Ref: 05-13).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Author note The proposal for this survey, a follow-up to an earlier survey funded by the Macular Society, was commissioned by the Macular Society.

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