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David Gaucher, Claire Chartier, Michel Weber, Francois Malecaze, Salomon Y Cohen, Eric H Souied, Nicolas Leveziel, scientific comittee of the survey; Quality of life of patients suffering from pathological myopia: overview of their social and emotional environment.. Invest. Ophthalmol. Vis. Sci. 2014;55(13):3609.
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Pathological myopia may affect 2 to 4% of the French adult population. The aim of this survey is to better understand patients suffering from pathological myopia through their experiences, the impact of the condition on their daily lives, their attitudes and beliefs. This exploration will enable us to better meet the needs and expectations of those suffering from this debilitating condition, which we assume has a significant impact on quality of life and social integration.
This qualitative survey was conducted in France from November to December 2013. Twenty patients suffering from pathological myopia, i.e. patients with myopia over -8 dioptres were interviewed. The sample is representatively split by socio-demographic criteria such as gender, age and region. A quantitative survey in 75 patients is planned in January 2014 to assess the impact of complications in the personal and professional life. Semi-structured interviews lasting approximately one hour allowed patients to speak freely about their experiences. A discussion guide has been devised, covering the daily lives of patients as well as their care and the history of their condition.
The first inference is that pathological myopia is a "non-visible" disease with professional and personal impact, which is underestimated in circles. The second is the difficult everyday reality faced by myopic patients, owing to a lack of understanding on the part of the public and the depreciation of the skills and abilities of those suffering from pathological myopia. Such are the inferences drawn from the first interviews conducted. Consequently, patients are using strategies to conceal the disease in professional and personal circles, so as to avoid isolation, and rejection and stigma exist. Possible adaptation strategies are emerging as a result of the initial interviews, such as research by key resource persons and development of other senses, such as touch.
This is the first in-depth study into the daily lives of people suffering from pathological myopia. It aimed to analyse their social and emotional environment. The results allow health professionals and general public to be alerted to the emotional and social difficulties experienced by these patients, which are perhaps underestimated by ophthalmologists.
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