April 2011
Volume 52, Issue 14
ARVO Annual Meeting Abstract  |   April 2011
Bringing Together Patients and Specialists - Organising a Nation-Wide Patient Day For Birdshot Chorioretinopathy
Author Affiliations & Notes
  • Nikolaos Koutroumanos
    Moorfields Eye Hospital, London, United Kingdom
  • Rea Mattocks
    Birdshot Uveitis Society, London, United Kingdom
  • Annie Folkard
    Birdshot Uveitis Society, London, United Kingdom
  • Christine Fardeau
    Pitié-Salpêtrière Hospital, Paris, France
  • Wen Xing
    Moorfields Eye Hospital, London, United Kingdom
  • Catey Bunce
    Moorfields Eye Hospital, London, United Kingdom
  • Mark Westcott
    Moorfields Eye Hospital, London, United Kingdom
  • Miles Stanford
    King's College London, London, United Kingdom
  • Carlos Pavesio
    Moorfields Eye Hospital, London, United Kingdom
  • Narciss Okhravi
    Moorfields Eye Hospital, London, United Kingdom
  • Footnotes
    Commercial Relationships  Nikolaos Koutroumanos, None; Rea Mattocks, None; Annie Folkard, None; Christine Fardeau, None; Wen Xing, None; Catey Bunce, None; Mark Westcott, None; Miles Stanford, None; Carlos Pavesio, None; Narciss Okhravi, None
  • Footnotes
    Support  National Institute for Health Research BMRC, University College London Public Engagement Unit, Moorfields Eye Hospital R & D
Investigative Ophthalmology & Visual Science April 2011, Vol.52, 2742. doi:
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      Nikolaos Koutroumanos, Rea Mattocks, Annie Folkard, Christine Fardeau, Wen Xing, Catey Bunce, Mark Westcott, Miles Stanford, Carlos Pavesio, Narciss Okhravi; Bringing Together Patients and Specialists - Organising a Nation-Wide Patient Day For Birdshot Chorioretinopathy. Invest. Ophthalmol. Vis. Sci. 2011;52(14):2742.

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      © ARVO (1962-2015); The Authors (2016-present)

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Purpose: : Birdshot Chorioretinopathy (BCR) is a rare, chronic, poorly understood, bilateral posterior uveitis, which results in loss of visual function. The disease and its treatment have dire effects on quality of life. The aims of the project were 5 fold: 1) To reduce the sense of isolation of patients with BCR, 2) to raise the profile of the disease 3) to allow a two-way exchange of information between patients and professionals, 4) to obtain a better visual outcome and 5) to provide a base for research.

Methods: : A Birdshot Day was organized by founders of the Birdshot Uveitis Society along with a team of healthcare professionals, public-engagement and audio-visual specialists. What patients wanted was the focus of the team’s efforts. The event allowed for extensive networking and exchange of ideas, talks by specialists and patient representatives and 'Question & Answer' sessions which addressed patients’ concerns. Structured anonymised questionnaires and formal interactive evaluation techniques were used to fully evaluate the success and short and long term impact of the day on both patients and professionals.

Results: : 50 Patients & 26 supporters joined 50 healthcare professionals for the Patient Day. Data analysis demonstrated a significant improvement in patient knowledge (P<0.001). Results showed that the priorities of patients and clinicians were not necessarily the same. Whilst drug side-effects were deemed the major problem in terms of patients' quality of life (55.8%), BCR patients prioritised research into aetiology (47.8%) in preference to research into better medication (31.8%). There was evidence that patients greatly valued meeting fellow sufferers (P<0.001). Results strongly suggested that patients' sense of isolation was significantly reduced and the number of 'hits' on the BUS website in the 3-weeks following more than doubled to 67,000. To date, 4 of our 5 aims have been achieved.

Conclusions: : We believe that this level of patient engagement should be encouraged. The Birdshot Patient Day proved a success. It has led to better understanding between patients and professionals. Patients have successfully directed and engaged into future research into their condition and future Birdshot Patient days are planned.

Keywords: chorioretinitis • uvea • quality of life 

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